A Prayer

My husband wrote this and I found it to be encouraging and insightful. I hope it speaks to your heart. ~ Renee

Lord, today I embrace the cross of relationships
Relationships imperfect
Relationships that hide wounds
Relationships that I am a part of and reflect

I choose to love people as they are and not as they appear in my utopian dreams

Give me the mind of Christ
That I might empty myself,
Incarnating something of you in this little space of relationships and time that I occupy


~ Keith Atkinson

WOW WOW WOW...

"WOW! WOW, I don't believe this. I thought you'd be a much harder case. You're turning out to be easy." These were the words of Dr. Duvic as she looked me over November 16th. I now only have 13% coverage. There was 13% patch (don't ask me what that means) and 0% plaque and tumors.

As Dr. Duvic continued to examine me and she kept saying WOW, I told her how we had started taking Communion before each treatment beginning in October. Dr. Duvic replied that she certainly believed in that and said she had a patient w/MF who was a Priest and is now in remission. She said she gives him a list of patients to pray for whenever she sees him. Keith, my husband, said to make sure we were on his list! I can't really contribute anything else to my sudden improvement. Just today I was reading on the MF newsgroup someone who has been getting the exact same treatment as me and after several years they are still in the same shape as they were when they started!

I will go to MD Anderson the first and last week of December and then I will go once a month. I have no idea how long that schedule will last. Another poster on our newsgroup said she has been doing Photophresis since 1999. Another stated that when they stop any of the treatments the plaque and tumors start coming back in a couple weeks of doing nothing. This why I'm believing God for my TOTAL and COMPLETE HEALING!

Another interesting thing (me... always the enigma...) my CD 4 cells have risen from 2163 to 4849 since 10/5. They should be in the 205-1451 range. I asked the resident about this and she said if she had just seen my blood tests she'd say I was still very sick, but looking at me she can't abide by that assessment. I wanted to ask more and press them on this, however again we didn't see the good Dr. until 3 hours after our scheduled appt. and frankly, I was ready to get out of there and get on the road back to Austin.

Aren't we all feeling this cold dry weather! It is really dry here and my skin is suffering, but it's only in 4 places... my face, my hands, my upper arms and my thighs! So back to buying lotion every time I go to the store! At least I'm not FREEZING! And thank heavens we live in Austin where hot humid days aren't far off. I'm praying and trusting the Lord for my complete healing before January or February, the only months that anyone can really say get cold in Austin!

Bless all you as you stand with me! Happy Thanksgiving and Merry Christmas to all!

Below is a picture of where I get my blood drawn each time I go to Houston and the sweet lady who draws my blood.



This is the lady who does my "quick draw". I have 8 vials of blood drawn on day one each time I go to MD Anderson. On the 2nd day of photopheresis, I was going to quick draw just to get a vial for my CBC. Fortunately one of the nurses said "You don't need to get your blood drawn the 2nd day, we can do it here." Now they tell me... how many months have I been going day 2 get my blood drawn? More times than I want to think about!

Update: Appts. Oct. 18-19 & Nov. 1&2

If you will remember, at my last update, I reported that Duvic wanted to see me every other week. And just after I remarked to Keith... "I'm not having fun anymore." However since she took me off the Interferon, we thought, we'll maybe going this often will counterbalance the absence of the Interferon. Well something significant is happening. Remember when I reported last time (Oct. 4 and 5) that the very day of my appt. I suddenly got these bumps all over my skin. And Duvic replied, "This is good... all the MF is leaving your blood and coming to your skin."

The notes from that appointment read: "She does have severe disease; however her skin score has gone from 100% to 64% -(10/5). Week after that the report read: Total body surface is 44% (10/19).

A 20% difference in 2 weeks!!! Ok, granted since I lost my 40 lbs there is less body surface than when I started so that might account for that low number (ha-ha). Seriously though I want to share with you what I'm convinced has been making the difference!

The Sunday before our October 4th appt. I felt the Lord speak to my heart and say that Keith and I were take Communion each time before I did my photophersis. Keith agreed and I went to Central Market and got some Matza bread and kosher grape juice. No reason, just because it was all on the same shelf!!

John writes this in his gospel: I am the Bread--living Bread!-who came down out of heaven. Anyone who eats this Bread will live--and forever! The Bread that I present to the world so that it can eat and live is myself, this flesh-and-blood self."John 6:51

God tells us that Jesus' body was broken for us, and by His stripes we are healed. In Isaiah the writer talks about Jesus' sacrifice for us and says it this way: The plan was that he give himself as an offering for sin so that he'd see life come from it--life, life, and more life. - Is. 53:10

When we drink the cup of blessing, aren't we taking into ourselves the blood, the very life, of Christ? And isn't it the same with the loaf of bread we break and eat? Don't we take into ourselves the body, the very life, of Christ? - 1 Corinthians 10:16

All quotes from:
The Message (MSG) Copyright © 1993, 1994, 1995, 1996, 2000, 2001, 2002 by Eugene H. Peterson

This last week, Oct. 24 & 25 after waiting 3 hours (hey it was an hour less than last time) she swooped in, picked up my arm and said "I see hair growing on your arm!" Then she gushed, "This is good, you've had a boost in your immune system. I'm very pleased!" And she was gone!

Hair on my arm is something to rejoice about? Ok, if she says so, but as I was pondering this, my heart dropped to my stomach... and I discreetly lifted my arm to view my armpit and dang it wouldn't you know it... HAIR! I've not had to shave my pits for months! Oh well I'll take thehasslel of shaving under my arms if that means I'm getting better!!! Especially since I have my groovy new razor from Schick Intuition Razor! Try it ladies, it's groovy.

Y'all knew I couldn't be serious for too long, but seriously, it is amazing to see God working so perfectly as He is perfect in my healing. Did you notice that all the verses above says LIFE, LIFE, LIFE? He has come to give us life and give it abundantly.

May you experience the love Christ has for you!

Thank all of you for standing with me in my healing.

P.S. If you want to make a comment just click on Other and put some name, any name, preferably your name so I'll know its from you ;), in the box.

..."it's one of the most disfiguring diseases in man." a quote from my Dr. during a Lymphoma Research Foundation Panel Discussion

Subject: Lymphoma Research Foundation Panel Discussion
Cutaneous T-Cell Lymphoma
Join our panel of leading Cutaneous T-Cell Lymphoma treaters for a discussion on the latest in diagnosis, management, and treatment of this condition.


PARTICIPANTS
Madeleine Duvic, MD
University of Texas Medical Center
Lauren Pinter-Brown, MD
University of California at Los Angeles
Arturo Molina, MD, MS, FACP
City of Hope National Medical Center

MARIO MACHADO: Hello. I'm Mario Machado and welcome to the tonight's special program on cutaneous T-cell lymphoma. This program is part of an ongoing educational effort of the Lymphoma Research Foundation. For the next few minutes we'll be defining what cutaneous T-cell lymphoma or CTCL really is, what causes it, who gets it and how it is different from other lymphomas. First, let's meet our special guests.

Joining us are three experts, Dr. Madeleine Duvic who is the Chief of Dermatology and Director of the Cutaneous T-Cell Lymphoma Clinic at the MD Anderson Cancer Center in Houston, Texas. Nice to have you here.

Immediately to her left, Dr. Lauren Pinter-Brown, Associate Professor of Clinical Medicine in the Department of Internal Medicine at the UCLA Medical Center in Westwood, California. Dr. Arturo Molina is staff physician in hematology, medical oncology and therapeutic research at the City of Hope National Medical Center in Duarte, California. I want to thank all of you for being with us this evening.

I know very little about the subject at hand. But let's talk about what cutaneous T-cell lymphoma is. Could you define it for us in simplistic terms?

MADELEINE DUVIC, MD: It's not one thing. There are lots of different kinds of lymphomas that start in the skin that we all lump together under the word cutaneous which means skin, T-cell which is a lymphocyte and lymphoma is a growth of lymphocytes.

MARIO MACHADO: Anytime you want to jump in and add to the definition, please.

LAUREN PINTER-BROWN, MD: I think it's a very broad term because it encompasses some conditions that really solely reside on the skin and may be treated with skin-directed type treatments and some other conditions that might manifest on the skin, but are really throughout the body and need to be treated with more systemic kinds of treatment, like chemotherapy.

MARIO MACHADO: Dr. Molina?

ARTURO MOLINA, MD: Another consideration is that no patient is alike. Patients will have many different manifestations yet we call it the same. The prognosis is quite different for different subgroups of patients. Even though we call it CTCL, we could be talking about a variety of different conditions.

MARIO MACHADO: You've defined what cutaneous is. T-cell?

MADELEINE DUVIC, MD: A T-cell is a white blood cell that helps B-cells make antibody, kills other cells and suppresses immune reactions. There are several different kinds of T-cells but they're all white blood cells.

MARIO MACHADO: The term lymphoma generally speaking means what?

LAUREN PINTER-BROWN, MD: It means a growth of one cell that becomes a huge population identical to itself and it's a cancer of these lymphocytes which are part of our immune system and one of our white blood cells.

MARIO MACHADO: This is a specialty that you have selected as your life profession. You were talking about research. I overheard you. There needs to be money and more attention paid to research. Are there a lot of people affected and afflicted with CTCL?

MADELEINE DUVIC, MD: Actually CTCL is a rather rare type of lymphoma. There are about a thousand new cases in the United States, but it belongs to a group of lymphomas called the non-Hodgkin's lymphomas. It's the fastest growing tumor or cancer in America. It's up there with melanoma.

MARIO MACHADO: It's common but it's not great in numbers. Is that what you're saying?

LAUREN PINTER-BROWN, MD: I think lymphomas in general are increasing throughout the United States and have been for many, many years. This particular lymphoma is not a very common one and it affects fewer people than some other kinds of lymphomas of other lymphocytes like B-lymphocytes.

MARIO MACHADO: How many people are diagnosed each year?

ARTURO MOLINA, MD: A thousand new cases per year.

MARIO MACHADO: At what age can it afflict you?

LAUREN PINTER-BROWN, MD: At all ages. From children to the very elderly.

MADELEINE DUVIC, MD: It's more common in older people but we're seeing it in younger people now.

MARIO MACHADO: This is a global scourge. It's not just the United States. It's a thousand per year.

MADELEINE DUVIC, MD: No, that's in the United States. That's probably a gross underestimate of the number of cases because family doctors, internists and people who are not dermatologists miss this disease all the time. It sometimes takes five years to get a correct diagnosis. That's the rule rather than the exception.

MARIO MACHADO: Why is it misdiagnosed?

ARTURO MOLINA, MD: Sometimes it doesn't look like a cancer when you do a biopsy. It can look like just a rash or dermatitis. It can be very difficult for the pathologist or the dermatologist who is looking at the biopsy of the skin to be certain that this is cutaneous T-cell lymphoma.

MARIO MACHADO: Are you the first line of defense then as the dermatologist before it goes to the oncologist?

MADELEINE DUVIC, MD: As a dermatologist, we see mycosis fungoides and T-cell lymphoma that looks like ringworm. We see it look like eczema or just a little pink spot on the skin or a white patch, or just a little scale or a little dryness. There are a lot of things that are benign that this looks like.

MARIO MACHADO: So the puzzle is --

MADELEINE DUVIC, MD: --is diagnosing it to begin with.

MARIO MACHADO: Correctly. But you can misdiagnose it.

MADELEINE DUVIC, MD: You just don't think of it when it's early in a lot of patients.

MARIO MACHADO: Before we got on set, we talked about the ugliness of the disease. You say it's an ugly disease to have.

MADELEINE DUVIC, MD: When it gets advanced, it's one of the most disfiguring diseases in man.

LAUREN PINTER-BROWN, MD: I think another thing that distinguishes it from other cancers is that it is on the skin. So whereas you might have some other cancer and you carry the knowledge of it, other people perhaps look at you and you look normal. They may not know. But this is sometimes a very difficult thing for people to camouflage. They have something that other people sitting in a room with them notice it isn't quite normal.

MARIO MACHADO: It progressively worsens?

MADELEINE DUVIC, MD: Yes.

LAUREN PINTER-BROWN, MD: It can. Yes.

MARIO MACHADO: So early diagnosis is like most diseases, it's the thing.

MADELEINE DUVIC, MD: Early diagnosis gives the opportunity to put it in remission with simple therapies. It probably improves the prognosis of the disease or how we do with it.

MARIO MACHADO: Anything about racial groups? African-Americans are more prone to have it?

MADELEINE DUVIC, MD: It's a little bit more common in males and a little bit more common in blacks. There is some data that they may do worse than white people with it. It's almost 50:50.

MARIO MACHADO: You were going to say something, Dr. Molina.

ARTURO MOLINA, MD: I was just going to add to what they were saying. I was going back to the symptoms of the disease. It's different from other lymphomas, not just because of the disfigurement that patients sometimes get. Sometimes they simply just itch a lot. Sometimes we have trouble controlling the symptoms. Even though the lymphoma is not necessarily threatening their lives, it does impact on their lives by making them feel miserable sometimes.

MARIO MACHADO: It worsens the rash if you have to scratch and agitate it.

MADELEINE DUVIC, MD: The rash can get worse when you scratch it. The itching can be unrelenting. It can keep people from sleeping and be impossible to treat.

MARIO MACHADO: Do a lot of people know that they have it? You mentioned an odor.

MADELEINE DUVIC, MD: The skin in MF can easily get infected and that can give an odor. That's right.

MARIO MACHADO: That is a characteristic of it.

MADELEINE DUVIC, MD: Because it is a disease of the immune system when it gets advanced, the immune system doesn't function normally and people are prone to infections.

ARTURO MOLINA, MD: Also because the skin is damaged. The skin is damaged by the disorder. The defenses against bacteria are impaired simply by the fact that the lymphoma is on the skin. The skin is broken down. Sometimes it ulcerates. The skin manifestations are quite striking sometimes, yet some patients have very slow growing lymphomas that do not have a lot of symptoms. Some of them have a lot of symptoms.

MARIO MACHADO: This is not a new disease that's surfaced in the last decade.

MADELEINE DUVIC, MD: It was described by Alibert, a French dermatologist in 1806. The leukemic form called Sézary syndrome was described just a little bit later. We've known about it for over 200 years.

MARIO MACHADO: How do we know how it began? How does it begin?

MADELEINE DUVIC, MD: It can begin as a little pink area on your skin or a little dry area on your skin, or scaly spot. It can begin with tumors or big nodules that come up. It can begin as redness. It can begin as white patches. There are a lot of different ways it can begin.

MARIO MACHADO: There are different varieties, is that correct?

ARTURO MOLINA, MD: Yes. Often patients are given a diagnosis of eczema, for example, or they're thought to have an allergic reaction and they get a medication called prednisone. Often they respond and it might be a while before the symptoms come back. It is not uncommon for patients to have been diagnosed with other conditions before the diagnosis of cutaneous T-cell lymphoma is established.

MARIO MACHADO: Can it start as another disease?

MADELEINE DUVIC, MD: Yes. If you define a disease as a certain group of characteristics, such as scaly red skin that itches, eczema, it can start as eczema. If you define psoriasis as thick scaly skin, it can start as psoriasis. But then as the cells grow and grow and grow and grow, there are too many lymphocytes so that it evolves into CTCL. It depends on how you use your words because diseases are just words that doctors use to put patients in groups.

MARIO MACHADO: You've been at this ten years or fifteen years.

MADELEINE DUVIC, MD: Fifteen.

MARIO MACHADO: How long have you worked on this, Dr. Pinter-Brown?

LAUREN PINTER-BROWN, MD: About thirteen.

MARIO MACHADO: Dr. Molina?

ARTURO MOLINA, MD: About the same.

MARIO MACHADO: What has come to the surface over these last ten or fifteen years in terms of knowledge, real knowledge that you can now diagnosis without error?

LAUREN PINTER-BROWN, MD: I think there are some more specific tests that a pathologist can use on the skin to help people make the diagnosis. The basic problem is getting the person who may be doing the biopsy to consider the diagnosis. If they do the biopsy in the first place and it's processed in a way that would allow you to do these special tests. Because it's such an unusual disorder and some dermatologists haven't seen as much as Dr. Duvic, they may not consider it. They say, I read about it in a textbook, but gee, I never really thought I'd see someone like this.

MARIO MACHADO: Geography, where you're born, where you live, is a factor?

MADELEINE DUVIC, MD: Not really.

MARIO MACHADO: Sun. Dry arid weather.

MADELEINE DUVIC, MD: Not really.

LAUREN PINTER-BROWN, MD: No.

MARIO MACHADO: What have you found that's common around the globe in this disease? What is the one common factor?

ARTURO MOLINA, MD: I cannot think of one because studies have specifically looked at this in large numbers of patients where very detailed history of the patients is obtained. They look at all the exposures to pesticides, herbicides, risk factors for other malignancies and nothing pans out as a convincing risk for this disorder.

MARIO MACHADO: But there are cures?

MADELEINE DUVIC, MD: There is no cure. It's my opinion that you might get MF because your immune system was stimulated by a number of different things: by a drug in one person, by an organism in someone else, by a chemical in a third person. You probably have the genetic ability to get that. The thing that sets it off is probably different in different people. Some people have a virus.

MARIO MACHADO: Hopefully we'll have a chance to talk more about it. But in any case, I'd like to thank the three of you for being with us today to share your expertise and your knowledge. Thank you for joining us as well. This is Mario Machado. We'll be right back.

[snipped]

Do I call you a researcher?

MADELEINE DUVIC, MD: Yes.

[snipped]

I'd like to start with the basic step. You trot into your doctor whether you're a regular annual visit or not. You go to your primary care physician. What initial symptoms suggest to primary care physician that lymphoma may be lurking there?

MADELEINE DUVIC, MD: Most family physicians don't do complete skin exams. They're not going to see it to begin with. When the patient shows it to them, it's going to be a little dry patch of skin or a little redness. The doctor is going to say, ³Oh, that's nothing.²

LAUREN PINTER-BROWN, MD: I think the problem with this illness is that in its early stages it doesn't look very bad. As Dr. Duvic said, it may look like a dry spot or a little allergy. Really the problem is getting people to think about this as a diagnosis.

MARIO MACHADO: Do you want to add anything to that, Dr. Molina?

ARTURO MOLINA, MD: From the standpoint of a hematologist or an oncologist, my job is a little easier because the patients have already been diagnosed. But when I take histories from patients they will give again and again a history -- oh, I've had this rash for 20 years or I've had it for five years. They called it this or they called it something else. It's almost part of the diagnosis of mycosis fungoides. It almost requires that they have other diagnoses before with conditions involving the skin.

MARIO MACHADO: What you're also telling me is that if they've had it for 20 years and it hasn't altered its look and size, it can be mistaken for anything for that matter? It doesn't grown--

MADELEINE DUVIC, MD: Different people behave differently. Some people will have a chronic rash for many years before they're diagnosed. Some people will present with lumps or bumps that are pink. That is suspicious because you shouldn't have lots of red bumps on your skin. Some people will turn completely red and itch and that's a different presentation. What we're telling you is there are lots of different ways it can show up.

MARIO MACHADO: You're saying that there needs to be education done within the medical profession as well. Not just the layperson.

MADELEINE DUVIC, MD: Absolutely. Absolutely.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: Who is doing that?

MADELEINE DUVIC, MD: Well I am.

LAUREN PINTER-BROWN, MD: You are.

MADELEINE DUVIC, MD: We all are. This is why we have our program tonight.

MARIO MACHADO: True. But we don't have the greatest assemblage of doctors perhaps. Whose ongoing task is it to educate doctors that this disease exists and what are the symptoms and what are the manifestations?

MADELEINE DUVIC, MD: They see it in medical school probably once.

MARIO MACHADO: More and more of your colleagues, your peers are learning and are aware of CTCL.

LAUREN PINTER-BROWN, MD: We hope.

MADELEINE DUVIC, MD: I would say there is still a need.

MARIO MACHADO: What are the tests that are done?

LAUREN PINTER-BROWN, MD: I think the first test is usually a skin biopsy. Many times the biopsy will be subjected to different kinds of examinations than a regular skin biopsy if the pathologist knows that that's one of the concerns. It will elucidate that the T-lymphocytes are in the skin and that they all come from a similar population of cells.

MARIO MACHADO: These tests are looking for that?

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: What do you do then? After the doctor determines that it does exist?

MADELEINE DUVIC, MD: As with all cancers, patients go through a process called staging. That is to allow the oncologist or the dermatologist and the patient to know where else they have these cells, how their disease might behave, and what would be the best way that they should be treated.

ARTURO MOLINA, MD: They get a thorough physical examination. We examine for lumps and bumps in other areas that are not involved by the skin. They get a routine, thorough physical examination.

MARIO MACHADO: But there is the possibility of mistaken identity. Can you mistake symptoms? Can you mistake other conditions that can produce the same symptoms?

MADELEINE DUVIC, MD: Yes. Other diseases of the skin can look like this. Lupus can look like this. It's a fairly difficult diagnosis to make. Sometimes it's helpful to look at the blood. Some of these abnormal T-cells can get into the blood so that is sometimes helpful.

MARIO MACHADO: What do you do then? From that point on, knowing that the patient in front of you has CTCL? Don't you have to know how long he or she has had it?

MADELEINE DUVIC, MD: Sure. That's a history.

MARIO MACHADO: How do you determine that?

MADELEINE DUVIC, MD: Talking to the patient.

MARIO MACHADO: But supposing the patient overlooked it or dismissed it as something trivial.

MADELEINE DUVIC, MD: They usually know when they got it actually. It's unusual for them not to have seen something.

ARTURO MOLINA, MD: Most patients are aware and they can often tell you how long they've had the rash. That's how it starts. It's a rash.

MARIO MACHADO: Starts as a rash.

ARTURO MOLINA, MD: In most patients. Not all.

MARIO MACHADO: Small patch or --?

MADELEINE DUVIC, MD: Big patches, small patches.

MARIO MACHADO: It starts with a rash. It's itchy.

LAUREN PINTER-BROWN, MD: Usually. Not always.

MADELEINE DUVIC, MD: It doesn't have to be. Not always. It doesn't have to be symptomatic at all.

ARTURO MOLINA, MD: One of the points we're trying to make is that the presentation can vary in extremes. There can be patients with very little skin involvement and patients where the whole skin, all the skin is involved. Somewhere in between there is a range between all the different patients. I personally think that every patient is different.

MARIO MACHADO: I want to go back to that because we talked about it before we got on, be mistaken for leprosy, for example.

MADELEINE DUVIC, MD: Yes. They can actually.

MARIO MACHADO: I saw a documentary recently. It's hideous.

MADELEINE DUVIC, MD: Leprosy stimulates T-cells. That's what it does. It's bacteria and it stimulates the immune system and the T-cells come into the leprosy lesion. It's not unlike mycosis fungoides where you don't have leprosy but you still have a lot of T-cells. A lot of the inflammatory skin diseases are just T-cells in the skin. Lupus, psoriasis, eczema, they all have T-cells in the skin.

This differs from other skin diseases because the T-cells are all twins of one another. They are clones.

MARIO MACHADO: But leprosy is no longer to be feared as it was in the days of Father Damien on Molokai, the penal colony.

MADELEINE DUVIC, MD: But I have a patient who had CTCL and then had leprosy and CTCL in the same lesion and was treated for leprosy and their CTCL went away. The leprosy was inducing the T-cell lymphoma.

MARIO MACHADO: So mistaken identity is a very important aspect of this whole thing by physicians when they diagnose?

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: Your job as an oncologist is to make sure that your colleagues who are GPs and family practice doctors understand the existence of this form of the disease?

LAUREN PINTER-BROWN, MD: That's one of my jobs. Yes.

MARIO MACHADO: That's a big job. Do you go all over the country to spread the gospel, if you will, to talk about this?

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: Or is it because the number of patients is so minute, it is minute compared to some other large well-known diseases?

MADELEINE DUVIC, MD: It is one of the rare forms of lymphoma. Yes. We do travel. All of us travel.

MARIO MACHADO: That is on behalf of the Lymphoma Research Institute or on the part of the universities that you are members of the staff?

MADELEINE DUVIC, MD: University.

ARTURO MOLINA, MD: Both.

MADELEINE DUVIC, MD: Whenever asked, we go.

MARIO MACHADO: Every time you go out there, you find there is more knowledge or it's the same lack of knowledge as the last time you went out there?

LAUREN PINTER-BROWN, MD: I think there is more knowledge than there was.

ARTURO MOLINA, MD: One of the aspects to taking care of patients with these conditions is that they probably benefit more if they go to a place that has experience where they can benefit from different modalities. You would have a dermatologist but also an oncologist. Sometimes that's helpful. Sometimes you need a radiation doctor because it's part of the treatment. If you have facilities that are able to provide the whole spectrum of services that are required to take care of this patient, that is probably preferred. Some institutions have clinics that specialize in this condition and those are the areas where a lot of the expertise exists.

MARIO MACHADO: Let's talk about America. In fact, we were talking about being on the Worldwide Web tonight. We have people all over the world watching and we have some e-mail. This is from Caesar in Berkeley. What are the implications of uncommon T-cell markers of the monoclonal infiltrate such as CD43? Could this explain some unusual symptoms? I don't even know what I read.

MADELEINE DUVIC, MD: There are many markers on T-cells as there are Baskin-Robbins flavors of ice cream. There are quite a few numbers of markers. I think we are just learning what the implications of some of these markers are. I don't know if we can address CD43 particularly.

MARIO MACHADO: What is CD43?

ARTURO MOLINA, MD: It's just one of the markers that can exist in white cells. The cutaneous T-cell lymphomas almost always have CD4, for example. That is part of the requirement for diagnosis in most cases, but even that is not an absolute rule. Some of them are CD8 which is a different type of T-cell.

MADELEINE DUVIC, MD: CD3 -- Maybe it's CD4 and CD3. CD3 is on most T-cells.

MARIO MACHADO: For us lay people, CD stands for what?

MADELEINE DUVIC, MD: Common determinant.

MARIO MACHADO: Three common determinant 43.

MADELEINE DUVIC, MD: There are about 200 of them.

LAUREN PINTER-BROWN, MD: On a cell there are special markers that distinguish that cell from other cells like baseball teams, I guess. One has a green and white uniform, one has a red and green. These are the things that pathologists look at to try and really pinpoint what kind of cell is this exactly -- what colors is it wearing.

ARTURO MOLINA, MD: Under the microscope a lymphocyte will look just like a lymphocyte but we cannot tell if it's a helper lymphocyte, it's a suppressor lymphocyte. Is it a natural killer cell? There are many different subsets of lymphocytes. Sometimes when you stain the cells with antibody and then analyze that reaction, you can tell this cell stains for this marker. Then we can conclude that this cell is a T-cell, for example, or a helper T-cell.

MARIO MACHADO: Obviously with the research that you're hoping for in greater numbers of people supporting the cause, are you hoping that you can detect more about what you're setting out to do?

MADELEINE DUVIC, MD: I think we all think that these T-cells in this disease start off as relatively benign good T-cells. Then over time they change and their mutations in their genes, in their DNA make them bad T-cells. I think the goal of research should be to define those molecular DNA changes that take them from a normally stimulated T-cell to a malignant cancer T-cell.

MARIO MACHADO: People who are watching the Worldwide Web want more information, they would write or contact the Lymphoma Research -- if they wanted to make a contribution to research, is there a central fund in this country or is it done university by university? You're all from three different medical institutions.

MADELEINE DUVIC, MD: There are several lymphoma groups including Lymphoma Research Foundation of America that is sponsoring this. Some of the centers have research groups as well that accept donations to do local research.

ARTURO MOLINA, MD: I believe that the mycosis fungoides group has started a Mycosis Fungoides Research Fund.

MARIO MACHADO: You have colleagues, peers in Europe or Asia working on the same thing as you are? Are there groups?

MADELEINE DUVIC, MD: Yes.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: How do you get in touch with them in terms of keeping them abreast of what progress you've made.

MADELEINE DUVIC, MD: There is an international society for cutaneous lymphomas with scientists and doctors all over the world. We have meetings.

ARTURO MOLINA, MD: I think we're all members of that.

MARIO MACHADO: That's where you see each other.

LAUREN PINTER-BROWN, MD: One of the places.

[snipped]

We're getting a lot of e-mails. Let's take a position. We're not going to treat people over the air.

ARTURO MOLINA, MD: That's correct.

MARIO MACHADO: Is there something that you want to address from the last time we spoke an e-mail submission as to specific to general?

MADELEINE DUVIC, MD: We don't think that we are in a position to give advice when we don't know the patient's history and the diagnosis may be wrong.

MARIO MACHADO: I think there is one question that I think is rather good though. How would I find a center? Should I find a lymphoma center or large hospital, which has more experience with CTCL to check me once in a while? If I don't have access to UCLA or to your school or to Loma Linda, what can I do?

ARTURO MOLINA, MD: The patients can simply ask their doctor how much experience they've had for this condition. Sometimes it's useful for the patient to go get a second opinion at an area where there is MF or CTCL clinic, for example.

MARIO MACHADO: Let's start with treatment modalities. The treatment of CTCL varies depending on what stage the disease is in. Before we get into that, let's start with the more general question. There is currently no cure. Is that correct?

MADELEINE DUVIC, MD: That's correct.

MARIO MACHADO: So what is treatment trying to achieve?

MADELEINE DUVIC, MD: One thing is your definition of cure also has to be addressed. For most cancers, oncologists and the like use a five-year period of not having cancer as a cure. But when you have a lymphoma that may grow very, very slowly like this, being clear of your lymphoma for five years may not necessarily mean that it is cured -- meaning that it will never ever come back in your lifetime. But we would be very glad to achieve remission or clearing of the skin for prolonged periods of time, particularly so the patient can be comfortable but also so we can perhaps prevent the disease from progressing further.

MARIO MACHADO: You said slow. You've never been surprised by a rapid development of symptoms.

MADELEINE DUVIC, MD: Absolutely I have. There is a wide spectrum, as we mentioned before, and some patients may be able to look back 25 years and said, I had this when I was a kid and everybody overlooked it. Now I'm 30 and 40 and you're telling me it's a cancer. On the other hand, unfortunately, there are patients that have a very abrupt onset of their illness. They have a much rockier course. They do not have long periods of time when they have stability of their disease.

ARTURO MOLINA, MD: I just want to comment on the use of the word cure. In medicine, there are many conditions that we simply do not know how to cure like high blood pressure or diabetes. But we certainly know how to treat them and we know how to control them. In some ways in some patients with CTCL, the situation is the same. We can treat it and we can control it and some patients will still live a normal life. They just need treatment sometimes.

MARIO MACHADO: This is accelerated. The knowledge and awareness of the existence of CTCL with you out there preaching the gospel, if you will, has increased the knowledge and awareness. Has it also excited the researchers and moved the progress of research?

MADELEINE DUVIC, MD: Yes. We're learning a lot more about the T-cell because of AIDS, the virus that kills the T-cell. In the last 12 to 15 years, we've learned a tremendous amount about the immune system and how the T-cells grow, what stimulates them. Through this research in AIDS, a lot more about immunology has been known. This will effect what we know about T-cell lymphoma as well.

MARIO MACHADO: But we don't want to cast any aspersions.

MADELEINE DUVIC, MD: No aspersions. But research on basic immunology helps us understand and treat this disease better.

MARIO MACHADO: Let's take a look at some of the more respected well-established treatment tools. Who wants to take that? What is the most common tool used?

MADELEINE DUVIC, MD: We can start with skin-directed therapy for early disease. That can include light, sunshine, tanning booths, UVA, and PUVA. It can also include some topical chemotherapy.

ARTURO MOLINA, MD: Chemotherapy that patients sometimes apply on their skin can be used. Some patients, who have a small amount of lymphoma on their skin, they can just apply the chemotherapy on the lesions.

MARIO MACHADO: By themselves. They don't have to --

ARTURO MOLINA, MD: The patients learn how to do it themselves. In some patients who have more skin involvement, they can apply the chemotherapy to their whole skin. That's one of the treatments. It's called nitrogen mustard.

MARIO MACHADO: Keeping it moist is important.

MADELEINE DUVIC, MD: Moisturizers are important. Antibiotics are important at some points in the disease. Some plaques and patches respond to simple things like topical steroid creams.

MARIO MACHADO: No side effects?

MADELEINE DUVIC, MD: Every drug has side effects.

MARIO MACHADO: Every drug has side effects.

MADELEINE DUVIC, MD: Every drug has side effects.

MARIO MACHADO: But doesn't necessarily manifest itself.

ARTURO MOLINA, MD: They're usually tolerable side effects. Hopefully they're tolerable side effects.

MARIO MACHADO: After that modality, what's the next most used?

MADELEINE DUVIC, MD: After skin-directed therapy is exhausted we use systemic biological response mediators.

MARIO MACHADO: What is that mean? That's --

LAUREN PINTER-BROWN, MD: It's a big term but I think what it means is something that works via your immune system to help your immune system fight off the cancer better. It's not chemotherapy. It doesn't kill maybe the cell directly but between it and your body, working together the cell gets killed and you respond. The disease gets better.

MARIO MACHADO: Is it a serum that you inject?

LAUREN PINTER-BROWN, MD: It's a lot of different things. One example is vitamins like vitamin A can work in this disease or variants of vitamin A.

Chemicals that the drugs make like Interferon. Interferon is made when you get the flu. It makes you feel achy and feverish. We give Interferon as a treatment for this disease.

MARIO MACHADO: Does it work?

LAUREN PINTER-BROWN, MD: It does.

ARTURO MOLINA, MD: It works quite well.

MARIO MACHADO: What does it retard?

ARTURO MOLINA, MD: We don't know exactly how it works, but it does exert its effects by recruiting the immune system. So basically it triggers an immunologic reaction that has an antitumor effect.

MADELEINE DUVIC, MD: It interferes with the signals that cells need to grow so they stop growing when it's around.

MARIO MACHADO: In all the research that you do, there are no quick fixes. There is no --

LAUREN PINTER-BROWN, MD: You mean pop a pill and it's gone. No, I can't think of any, can you?

MADELEINE DUVIC, MD: It might go for a while. Sometimes.

MARIO MACHADO: It can?

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: Like what?

MADELEINE DUVIC, MD: It depends on the patient. I can't generalize. It depends on the patient. There are patients who respond to topical steroids. There are patients where a little bit of sunshine clears them. Some patients need chemo and it clears them. It depends.

MARTY MOSS-COANE: Permanently or temporarily?

MADELEINE DUVIC, MD: Temporarily usually.

MARIO MACHADO: It manifests itself again at some point.

MADELEINE DUVIC, MD: It comes back. Oftentimes when a patient gets really bad, if you treat them the disease will come back in a very mild form. That happens a lot.

MARIO MACHADO: What other therapies do you use?

ARTURO MOLINA, MD: There is one that's directed at the skin that we have not talked about and that is radiation. Radiation treatments to the skin can be utilized.

MARIO MACHADO: Usually the oncologists look at chemotherapy, radiation therapy and surgery. But surgery is never needed.

MADELEINE DUVIC, MD: That's not true. If there is a single lesion, sometimes we do excise it.

MARIO MACHADO: But you go with radiation therapy second after chemotherapy first.

ARTURO MOLINA, MD: No after the --

MARIO MACHADO: You're nodding your head.

LAUREN PINTER-BROWN, MD: I think in this illness what we've been trying to describe is that chemotherapy is something that's not used as often as some other modalities. Even as oncologists we behave very differently with this illness in that we will use things that aren't chemotherapy in the sense that people think of chemotherapy as an injected kind of thing or something that makes your hair fall out, or something that makes you nauseous. Even when you put it on your skin, it doesn't go inside of you and it causes none of those effects. I think this is a situation where chemotherapy is certainly used but there are a lot of other modalities that may be used before it.

MARIO MACHADO: Blood cleansing, blood swapping.

MADELEINE DUVIC, MD: We don't use blood swapping but there is a technique called photopheresis where we actually sunburn the blood. We take the blood cells out and shine lights on them and put them back into the person. They're dead cells now and the person's immune system sees that and makes an immune response against the dead cancer cells. It's an effective treatment in some patients. [Note: this is the treatment I do every other week for 2 days.]

MARIO MACHADO: What's the determination that you use that modality?

MADELEINE DUVIC, MD: It works best we think in patients who are red and scaly.

ARTURO MOLINA, MD: Or in patients who have lymphoma cells in their blood. Sometimes it works in those.

MARIO MACHADO: From Batavia, New York, Laurie has a question for the three of you. I am a CTCL patient at Roswell Park Cancer Institute in Buffalo, NY. I will be presented at the symposium at Buffalo General Hospital as Dr. Howard Stoll's patient. I just wanted to say hello.

Do you know them?

MADELEINE DUVIC, MD: I know Roswell Park. It's a cancer center in New York.

MARIO MACHADO: They appreciate your efforts in fighting the disease. I do want to thank you. Time goes very quickly and I hope we will have a chance to talk about this again. But I want to thank you very much for joining us this evening and sharing in the program. Thank you at home for joining us as well. I'm Mario Machado. We'll be right back.

[snipped]

You mentioned as we were away for a few minutes, the importance of letting people know that there are chat-rooms where patients get together -- sufferers. Do I say sufferers or victims?

ARTURO MOLINA, MD: I'm not sure how to answer your last question. But in reference to your first question, there is a network of patients with cutaneous T-cell lymphoma who interact on the computer. I think that is particularly useful for newly diagnosed patients to know that there are other people who are going through the same thing that they are going through. The information that they have there is also quite thorough. In some ways it is a way for patients to empower themselves and learn as much as they can about their disease so that they can make decisions regarding treatment with their doctors.

MARIO MACHADO: How do you learn of other advancements that you've made in your research that you want to share with the community as a whole? How do you know of current developments in CTCL therapy? How do you get advice?

MADELEINE DUVIC, MD: We go to meetings and present our work and talk to each other. We read journals and we are participating in clinical trials for new agents.

MARIO MACHADO: For the people suffering CTCL, what's the most exciting news to date as of tonight?

LAUREN PINTER-BROWN, MD: I think one thing that's very exciting is that there's a drug that's been released specifically for their illness which has never happened before. It's a drug that was designed in the laboratory and where someone really thought through in what cases it would be the most useful and happened to be right.

MARIO MACHADO: That pioneering came from where?

MADELEINE DUVIC, MD: This drug is called ONTAK or DAB-IL-2. It was developed by a biotech company in Boston named Sarogen, which now belongs to Ligand Pharmaceuticals. ONTAK is a targeted fusion toxin. It takes T-cell growth factor to a T-cell that has a receptor on its surface and takes a poison in, the diptheria poison that kills the cell. It's like those smart missiles that we watched during the Persian War that hit the buildings, went through the window and knocked down the building because it's targeted to the T-cells.

MARIO MACHADO: This has never been attempted before?

MADELEINE DUVIC, MD: That's right. It's the first fusion protein that has been approved by the FDA.

MARIO MACHADO: What results have come forth and the patients that have been given this treatment?

LAUREN PINTER-BROWN, MD: There have been studies done which have allowed for the drugs release in patients who had had a lot of previous treatments and had found them not useful any longer. About a third of them got responses. Now the drug is on the market. Perhaps we may see that it is even more useful in some patients that have not had so many treatments before it.

MARIO MACHADO: FDA approved therapy.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: First time ever.

MADELEINE DUVIC, MD: Right. It's given IV by infusion. It's given five-days a week every three weeks. I've seen tumors that were unresponsive to chemotherapy melt with it.

MARIO MACHADO: Are there some treatments being proffered out there that are a little premature, that haven't really been tested?

LAUREN PINTER-BROWN, MD: There are many drugs that are in trial right now. They are offered as trial experiences that no one knows if they'll work.

MARIO MACHADO: What about vaccines?

MADELEINE DUVIC, MD: There was a vaccine study done at the University of Pennsylvania that looked at vaccination to the T-cell receptor. The problem with T-cell receptors is that they're different from one T-cell to the next. These were vaccines in a can that came off the shelf. Really to do vaccines correctly, you really have to make a vaccine for every single patient's own T-cells. These did have some results but they are very preliminary studies.

MARIO MACHADO: The common interpretation of vaccines is that it is preventive. You take it not to get something.

MADELEINE DUVIC, MD: Right.

ARTURO MOLINA, MD: To stimulate the immune system to attack whatever it is you're trying to prevent.

MADELEINE DUVIC, MD: They are therapeutic vaccines and then there are preventive vaccines.

ARTURO MOLINA, MD: But the concept of targeting the treatment is one that's very important because in general, the chemotherapy that we use for most malignancies is not very specific. It hurts the good cells and the bad cells. Now, as we're learning more about how to distinguish the bad cells from the good cells, we are trying to develop treatment that specifically target the bad cells and hopefully minimize the bad effects or side effects to the good cells.

MARIO MACHADO: We're coming to the new millennium. Other than some diseases or illnesses they will find a cure. What is the widest hope that you have for this disease that you're working on?

MADELEINE DUVIC, MD: We need more knowledge about the genetic changes that cause this. Once we understand what happens to the T-cells to make them malignant, I think that we'll be able to target those changes specifically and treat this cancer better.

MARIO MACHADO: Who is working on this? A whole array of people?

MADELEINE DUVIC, MD: A few people.

MARIO MACHADO: Enzyme inhibitors. I just have a list of some treatments. Enzyme inhibitors, computer-generated molecules, can we discuss some of this?

MADELEINE DUVIC, MD: There is a computer-generated molecule that inhibits a T-cell enzyme that's in clinical trials. We don't know how effective it is yet because we don't have the data. I think we should just say something about clinical trials because there are a lot of opportunities for patients to help with cancer research and get better treatments, but a lot of cancer patients won't go into clinical trials. Our government, Medicare won't pay for people to go on clinical trials and a lot of insurance companies won't pay for people to go on clinical trials. That really keeps us from getting new drugs.

MARIO MACHADO: What's the solution? What are you asking for?

ARTURO MOLINA, MD: Patients can stand up and speak up. When they are rejected by the insurers, they can sometimes appeal the rejections, for example. It will require patients empowering themselves. But it is a problem when we're trying new treatments and an insurer will say, ³This is experimental so we're not going to pay for it.²

MARIO MACHADO: But also you're faced with a fight with a small constituency. You don't have a lot of patients.

MADELEINE DUVIC, MD: This is a general problem for all of cancer and all of medicine. It's not just for CTCL. It's a real problem.

I think there is one other area that I'd like to mention and that is Vitamin A compounds, retinoids that are selective for this disease may be developed as we know about it. One that has been tested recently is bexarotene or Targretin. It looks like it's going to be extremely effective in some of the worst forms of CTCL Sézary patients and also in early patients. It works in all stages of the disease.

MARIO MACHADO: What stimulates you to go on?

MADELEINE DUVIC, MD: My patients and knowledge.

MARIO MACHADO: Tell me about your patients.

MADELEINE DUVIC, MD: They're wonderful and they want to learn more about their disease and they want better treatments. They're grateful for what we do for them I think.

MARIO MACHADO: What frustrates you?

MADELEINE DUVIC, MD: What frustrate me? There are too many patients and not enough time to do research.

ARTURO MOLINA, MD: I agree with that.

MARIO MACHADO: You sure of that.

LAUREN PINTER-BROWN, MD: I think it's frustrating not to have more things that we can do and things that work better.

MARIO MACHADO: But don't you go to the office like most of us do in the morning, your lab and plow into finding new discoveries every day.

LAUREN PINTER-BROWN, MD: I'm not sure about every day, but because it's very busy there are a lot of patients to be taken care of.

ARTURO MOLINA, MD: Often a lot of the knowledge comes from the patients themselves. When you listen to them carefully, they will tell you something that's not in a textbook. I think that is what I find very wonderful about what I do. Everyday I learn something. It's often my patients who teach me that.

MADELEINE DUVIC, MD: That's right.

MARIO MACHADO: Patients today are willing to talk about their diseases more freely than they were ten, fifteen, twenty years ago. Doctors were less willing to listen I think in those days. You're sort of interactive doctors today.

LAUREN PINTER-BROWN, MD: We hope so. We're in the process with our patients as partners. It's not really you come to me, I give you a pill and fix it. You walk away. I think it's really a partnership and we need to work together to figure out what's the best solution for that particular person.

MARIO MACHADO: Let's summarize again. In the few minutes that we have remaining. What should a person do if they suspect that they have CTCL?

MADELEINE DUVIC, MD: They should go see their dermatologist.

MARIO MACHADO: First step.

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: And then?

MADELEINE DUVIC, MD: If the dermatologist thinks CTCL, they should have a biopsy taken.

MARIO MACHADO: And then?

MADELEINE DUVIC, MD: If the biopsy suggests MF, they should have a work-up and depending on their stage, see a specialist or an oncologist. It's a step-wise process. If it's not CTCL but suspicious, they should have another biopsy in the future because oftentimes it takes several.

MARIO MACHADO: I'm on the Internet tonight and I'm listening to you three respectable and respected doctors. I don't have access to sophisticated medical centers in my town. I've got a laptop and I'm able to plug in tonight. Where do I go? Who do I find information from as to where I should be going to look after this problem that I have -- suspected problem?

LAUREN PINTER-BROWN, MD: I think there are several avenues. One would be the patient group that was discussed before. I have a very big database, if you will, of which doctors are specialists. In addition, there is an international society for cutaneous T-cell lymphoma and they maintain a webpage as well with the members of that group and where they're located.

MARIO MACHADO: Do you have the website off the top of your head? The chat-room?

LAUREN PINTER-BROWN, MD: No.

MARIO MACHADO: Do you participate in the chat-rooms occasionally?

MADELEINE DUVIC, MD: No.

MARIO MACHADO: Why not?

MADELEINE DUVIC, MD: It's for the patients.

LAUREN PINTER-BROWN, MD: I do read the messages and the main reasons I do is because I have learned about a lot of things that patients do that I may not be aware of. I have learned about how doctors' words impact patients and how they interpret what is said, so that I can talk to my patients in a more humane fashion and in a more communicative fashion. I really learn a tremendous amount from hearing or reading the conversations between patients about how I can improve what I do.

MARIO MACHADO: One thing that I forgot to mention is cultural differences. I think we've run out of time. Does that impact how you can apply treatment? People from different cultures?

MADELEINE DUVIC, MD: Definitely.

MARIO MACHADO: For sure. All right. I want to thank you three experts for being with us today to share your knowledge. Thank you for joining us as well. I'm Mario Machado.
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My Favorite Quote

Care about what other people think and you will always be their prisoner.
-James Frey, A Million Little Pieces (Pg. 139)

My Friend, Andi, Summarizes my previous post

okay Renee, you are getting complicated!

Let me get this straight:

The good: - no more interferon shots! you will be feeling better! maybe not as tired.
- Sezary cell count down, yea, this means you are getting well!
- Duvic sees improvement! must be true, she is brutally honest
- new medicine doesn't stain, less things to wash!
- you DO NOT have hepatitis, you don't need any more serious conditions!
- you are still skinny, how fun!!!
- you won't have to fight Keith for the bed covers,
- you love the heat, so no need to fix A/C compressor!
- you have unbelievable, supportive friends and family who love you!

That all sounds really good!!! I am so happy for you!! The good news seems to outweigh the bad. And of course the BEST NEWS?

GOD IS THE ONE IN CONTROL and he is so awesome! He loves you and you will be healed.

The Good News and the Bad News

I have good news and I have bad news…
I just returned this week from my appointment with my doctor and treatment. Here are the results from meeting with Dr. Duvic.
The good news: She is seeing lots of improvement
Some background: On Tuesday Keith and I noticed large bright red welts all over my arms and on my legs. We wondering if it was an allergic reaction to the antibiotics I’m on or was it because I didn’t do my wraps the night before [I had taken my interferon shot that day and came home Monday night sick and feeling really crummy].
But Dr. Duvic said it was none of that. It’s that my Sezary Cell Syndrome (which is in your blood) is diminishing and all the MF cells are rising to my skin. My Sezary Cell count has gone from 92 percent to 73 percent in just 3 weeks. What a blessing and gift from God.
The bad news: because all the cells are manifesting themselves on my skin, I have to start using Nitrogen Mustard on my entire body. This is a chemo therapy that is highly toxic. I’m to smear it all over my body and for now, leave it on for 2 hours. I had heard so many horrible things about it from my news group buddies who all have MF that I confess I didn’t even open the jar until today (Friday). It seems that mine is mixed with aquaphor so it is clear. I guess everyone else is yellow because people talk about it staining all their clothes, sheets, etc. So I don’t think I will have to worry about that. However, anything I wear or touch I have to wash separately and wash 2x. When I start using it at night it is probably a good idea that Keith does not sleep with me. After all it is a poison. It was used quite affectively as a poison in WWI!
Here is the definition: any of various poisonous compounds originally developed for military use (see poison gas ). Like mustard gas and lewisite, it is a vesicant (blistering agent). In the form of its crystalline hydrochloride it is used as a drug in the treatment of Hodgkin's disease , non-Hodgkin's lymphomas , and brain tumors. Nitrogen mustards cause mutations in the genetic material of cells, thereby disrupting mitosis, or cell division. Cells vary in their susceptibility to nitrogen mustards, with rapidly proliferating tumor and cancer cells most sensitive; bone marrow, which produces red blood cells, is also sensitive, and depression of red blood cell production is a frequent side effect of nitrogen mustard therapy. The nitrogen mustards also suppress the immune response (see immunity ).
More bad news: It cost us $212.00 for two jars. They said insurance showed the cost was $212.00 and that’s what we had to pay. I can only get the mixture at MDA.
The bad news: My liver enzymes jumped 3x’s from last time. My count was 1,070. So Duvic said “You have hepatitis.”The good news: When I asked do I have A, C? She said no, no you don’t have the disease you just have elevated liver enzymes. Even the resident said she thought it was weird that she used the term hepatitis.
The Good news: Duvic took me off the Interferon. So maybe the sickness, tiredness, depression will lessen.The bad news: Is it the Interferon that is keeping me skinny???? Now I’ve got to learn to eat right so I don’t gain back all my weight, especially since I gave away all my “fat” clothes.
The bad news: Because she took me off the Interferon she now wants me to come to MDA every TWO weeks for my photopheresis.
The really bad news: I told Keith on Tuesday while I was having my treatment that I was finally tired of this. And now with the added regiment of having to put the Nitrogen Mustard on every day for 2 hours, then take a bath, then do the wraps and having to go to Houston every 2 weeks, well I can finally see how cancer can be all consuming. For now until I can work up to using the NM over night I think it will be easier to do it in the morning before I take my bath. I’ve not been too keen ever on taking showers anyway, and the thought of taking TWO in one day really distresses me. I know, I know, how shallow can I be??? I just can’t see coming home, putting it on, taking a shower then doing my wraps. But also I don’t want to be missing so much work, but I have to confess yesterday I felt more blue than I have since before I found out what I had. Also, the fact that my car compressor went out and it’s going to cost 1200 didn’t help any feelings of well-being I might have been able to “mustard” up! Ha!!
The really good news: However, all that said, God is still in control and HE is so GOOD. And this is what He is using to heal me, not just put me in remission but actually heal me. I still hold fast to that promise.
So I give thanks to God for seeing improvement even in the midst of what looks like set-backs. Pray that I will find a rhythm that allows me to take care of myself, and still be a blessing to my family and my job.
Bless you all for your touching e-mails, support, prayers, and love. I couldn’t make it w/out you all!!!

Another day, another hour waiting for the Doctor.

There I am perched on that little table in the doctor’s office (how in the world do football players lay/sit on those things???...but I digress) and in walks a Medical Student. He appears to have no clue why he is there, so being the helpful person I am I begin pointing out new spots on me and my smaller lymph nodes, and he looks, and he feels tentatively, obviously clueless. Then the resident comes in. She looks at his notes he has made and rapidly begins "shoulding" on him… you should look at this, look here, you should have made a note… and on she goes while he stands quietly aside and trying to take it all in.

The atmosphere of Dr. Duvic’s staff and office is she’s the Queen of England… and then there are her servants. And when the queen is absent, the head servant then flexes her/his authority. It really is quite funny. So the resident point out a few spots on my legs that ares clear and then she looks at my back. Wow your back looks good, she says. Then the queen comes in. She is looking me over while the resident points out a spot here, a spot there. The queen turns me around and says, Your back looks good. Keith and I are listening but trying to ask questions from our list we have complied. She answers never looking at us and writing some numbers on a piece of paper and adding them up. When she finishes she proclaims, you are about 30lear and explains that means I still have plaque over about 70f my body. She does agree that my lymph nodes are smaller. Good news? Who knows… she doesn’t comment. When she gets to my feet, which really do look 100etter, she says this is not good and writes 3 scripts for my feet. At the last minute she has the resident swab them for staph, which I have … AGAIN! It was interesting when I got the call from the Resident telling me I had the staph infection and needed to be put on antibiotics; I was at my primary doctor’s office. So that made it easy to get the prescription. Didn’t have to count on Walgreen’s to get it wrong.. I mean right. (see 4th paragraph for what that is all about). I also asked the resident while I had her on the phone what my blood tests showed. She said it looked like my T-cells were down (good sign) but my Sezary Cell count was back up. Earlier she had commented that staph infections were very common in Sezary patients… so maybe it was the staph infection that made my count go up???? Anyone??? No one knows about this MF. I had a nurse tell me that her daughter-in-law is going to school to be a PA (Physician Assistant for all you non-medicals… as if I know any??) and she had told her daughter-in-law about me so when they got to the T-cell lymphoma her daughter-in-law was quite interested, but they ended the short lecture with “but don’t’ worry about this, it’s so rare you’ll never see it!!!”

Ok, back to Duvic: She looks at my last blood tests and says your iron count is low, very low. Turns to the resident (who I’ve never seen before, btw) and says, have we done a comprehensive iron count on her? She then looks at me says, “That can be a sign of colon cancer.” and smiles! She asked if I had ever had a colonoscopy. I said No, and she said, Well it’s a good idea, you are 50. Like she has to remind me?? She continues to look at her notes and suddenly her head jerks up and she says, “Why aren’t I seeing you every time?” Meaning the fact that I come every 3 weeks for my photopheresis and have seen her only 3 times in the last 5 times I’ve been there. Keith and I just shrug and think to ourselves, well you never said we needed to see you every time I came for my photopheresis! So now I’ll be going on Wednesdays and Thursdays. I think. She may have clinic on Tuesdays but we didn’t get a chance to ask because suddenly she was gone. The room becomes eerily quiet; Keith and I look at each other and say “Are we done?” But wait there is more… suddenly the door opens and in walks in a beautiful medical student female and she says, Dr. Duvic said I should look at your skin. She looks and says “Oh your back looks good.” And she walks out the door.

One question we were able to voice was the fact that I’m having trouble with Walgreen’s renewing my prescriptions. Because the residents usually write my scripts, then they move on when a renewal is ready, the faxes are not getting to Duvic. And then I asked them to call her nurse, Johnny and later they told me his voice box was full. Well it was a mess. So Duvic, pops up as I’m asking/telling her this and she snaps, “Get me Johnny.” Johnny walks in and she says “Johnny we have an unhappy patient!” I’m trying to explain to Johnny I’m not really unhappy I’m just trying to make it easy for ME to get my meds. After all I AM the one with cancer, right? The conclusion I’ve come to is I need to call Duvic’s office and renew my own scripts (am I using that word correctly all my medical friends?)

My skin is looking better. We (that would be Keith) continue to do the wraps every night. If I miss a night then I get these ugly bumps on my thighs (talk about cottage cheese) and itch more the next day. We are down from about 2 18oz bottles of lotion every week and half to about one every 3 weeks. It’s so nice to not be so dry. And while I can still be cold at times its no where as bad as it was!!! I’m actually cold when other people are and I’ve been pretty hot some of these 100 degree days!

One strange thing that I have no explanation for is my Interferon shots will some days just wipe me out (very fluey feeling) and then the next shot I’m just fine. It’s weird and I just never know will I be ok after my shot the next day or the next? If I take some ibuprofen and go to bed I’m all better the next day! I still continue to handle it better than anyone else I’ve encountered who has taken these shots. Oh yea, Dr. D also said I have a touch of hepatitis but that is common when taking Interferon which is used to cure hepatitis C… I get so confused.

Overall I’m really doing great. I have learned when I run out of gas… I go to bed. No matter what time or day and I sleep until I wake up on my own and then I’m ready to go again. I think doing this has given me more energy overall, and I’m more focused (though my boss may disagree). Keep praying. It’s your prayers that is making this all bearable. God has been so good to me. And faithful I still have no doubt that HE will cure me from this “don’t worry about this cancer, it’s so rare you’ll never see it” MF!!

Words can’t express how much your love and support and house cleaning (hey that’s probably why I have more energy… someone is cleaning my house almost weekly!) has been a blessing to me and my family. I love you all dearly and pray the Lord will bless you all 3-fold with the blessings you have poured out on me.

Ok, it’s late I’m not going to check this … I want to get it out and I know you all will give me grace!

Oh p.s. When we moved to our new house our bathroom has a wonderful Jacuzzi tub. Well I’ve never been able to take baths because it only made my skin worse. But this past weekend I was exhausted and thought a bath would feel so good! So I thought I’ll just chance it and Praise the Lord it didn’t bother my skin at all!




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Thursday, September 1, 2005 11:22 AM CDT

Another weakly update ;)... on the 14th of September I'll see the Doctor so I should have lots more news!

I don’t have much to report. I went for treatement last week and my mom came and she journalized every moment in pictures. You can see them under photos at the bottom of the page. I did choose to leave some of the pictures off, like the one where they were trying to get my IV in. I decided, since my right arm always cramps during treatment, I’d use my left arm 2 days in a row. AGGGG, my vein rolled. And I hate, hate, hate having my blood taken, so I was NOT happy. But they called Joe over and they finally got it.

The wraps continue to work… less flaky skin and less itching. And of course w/this WONDERFUL 100 degree weather I got to wear a sleeveless dress yesterday (ok I did have a jacket on too)

I continue to be exhausted even after 11-12 hours of sleep. But I hear this is absolutely normal with taking the Interferon shots. And then there is the brain fog. Also typical with Interferon. In fact yesterday after I took my kids to school, I was listening to the news about Katrina. I got out of the car and went into the house. When I got ready to leave to come to work, I searched the house for my keys and finally looked outside in my car and yes there they were, on auxiliary. So I had to get a jump, etc.

I’ll be joyous when God completely heals me and several other people in my life will too :^)… My husband, my kids, and my boss!

The weight loss continues (which is the fun part) and did you know that you have to get your glasses tightened if you lose 40 lbs??? They kept falling off my face.

Again, thanks for all your love, support and prayers. You all have been so kind, patient, and encouraging to me! So check out my new pics. ~ Renee

P.S. Not checked for missing words, bad grammar, or flow of thought.

Reports from Houston - August

Another Weakly Update ;)

Why do Texans think they have to keep the a/c set on 72 or lower? I know it gets hot here, but hey, think how much energy and money we would save by turning up the thermostat a few degrees.

So it continues my dear friends and family… I’m still cold. It's been 7 days since my last treatment and while I admit I’m not as cold, as I type this I have the heater going, shawl draped around my shoulders and the unibomber look is backkkkkkkkk!!!

Ok, enough griping. I don’t have much to report. I went to Houston last week and had my photopheresis treatment. Told the doctor in charge of the machines about me not being as cold last time and he said, “oh well, let me know if it happens again and I’ll talk to Dr. Duvic.

Ok this is now a week later and I’m finally getting this finished. Here’s what’s happen this week:

I HAD NO IDEA

On Saturday night Keith and I went to a very nice restaurant to eat. After we got up to leave I realized that I had not been cold or itchy for the 2 hours we had been there. Ok, granted, I had on a turtle neck sweater, heavy knit sweater and sat with my back to a large window that faced West and was still warm from the afternoon sun! Oh yea, and it might have been the Amarula (On the wide-open plains of Africa grows a tree uncultivated by man. Scientists call it "Sclerocarrya birrea", but it is more commonly known as the Marula tree. The tree only grows in one area on the entire planet, the warm, frost-free (unlike me!) regions of subequatorial Africa. It is from the fruit of this mystical tree that Amarula Cream is borne). and coffee! OH MY GOSH… now that made me feel very warm. Anyway, I had no idea how much energy of each day I’m spending trying to keep warm and not scratch.

My skin continues to look better but I’m sooooooooooo tired. Today I slept (after 8 hours last night) 5 hours and I’m ready to go back to bed again. I had turned off all the phones, put the answer machine volume on 0, left my cell phone downstairs, but dang, forgot to turn off my pager. So if my pager had not gone off who knows how long I would have slept.

Now to the important stuff, prayer requests: I mentioned earlier the woman in Marble Falls who has MF and has been doing those wild wraps (lay on a bed, smothered in a steroid cream, wrapped in hot towels, trash bags and blanket) well anyway, she said that she was completely itch and flaky free. So Keith and I have committed to doing these wraps each night. It is time consuming, but if it helps w/the itching then it’s worth the time and effort. So pray that we will be up for this challenge each night, when we are both tired. Pray for me not to be exhausted. My job, my house, my kids are all suffering because of my extreme tiredness. I’m still cold.

I’m off to Houston again next week. I won’t have any information really until after September 14 when I see Dr. Duvic again

Meeting w/Duvic - July: another "Weakly" update

My Weekly (or should I say weakly? update not because I feel weak but because I'm so bad about updating weekly).

So I finally saw Dr. Duvic last week. My appointment was scheduled for 2:15 pm and we got into a room about 4:15 pm and left at 5:15 pm! Of course I saw her resident first. A very beautiful oriental girl with perfect skin… I mean geez, what is that all about? Sort of a Beauty and the Beast theme going there! Dr. Duvic, flies in, looks me over, says “You’ve still got staff infection” She’s barking orders to the resident, who is responding with “I’ve done that…" in a snippy voice. Ya think they had a hard day? being 3 hours behind time? Ok, we’ll give them all the benefit of the doubt.Of course they repeated "You've got to quit scratching." Which I wish I had replied... "Yea, right that's like telling Richard Simmons to not be so PERKY!!"

My mom asked, Well did she have ANYTHING good to say? Well she did…she said my back looked good. (Viewings available between 1:30 pm and 3:30 pm Monday-Friday, by appt. only on the weekends) Well here are the good things I have to say!!!

1. I’m not as cold… in fact today I was actually HOT in my office. Thank you thank you thank you for praying for that. I can sit in a restaurant and not look like the Unabomber (for those of you who have NOT seen me in my hooded sweat jackets, that’s what that refers to)
2. I’m still losing weight… not a fun way, but I can stand to lose another 20 lbs.
3. My skin is beginning to look and feel like skin. Several comments of “I think I see pink, Renee” and “you're not purple anymore” and then my husband said after putting lotion on my back this morning “You skin feels like skin finally!”
4. And how is the itching you ask? Oh I still am! I’ve been reading a book of short pithy stories called “Stories from the Front Porch” and decided to try my hand in writing something like that about all the ways I find to scratch. I've posted it in a seperate post.

I’ve been very tired the last 2 days, but it may be because I’m now on 2 antibiotics. Got another bladder infection. That is what will kill you with this cancer… the infections. I’m trying very hard to keep infection at bay. But with all the scratching it’s hard. So pray God will protect me from myself. Once again, thank you all so much for all your love, prayers and support. You are my angels everywhere I go!

Oh yea, forgot to mention I've been griping because I've lost almost 30 lbs and I can't wear any little, cute, kicky sun dresses or skirts because I'm NOT that warm yet. Let me see... I think I read somewhere "Vanity is thy name, oh woman!"

Journal Entry 4 - Staging, Meds & Definitions

I know many of you have been wondering “When is she going to update her web page???” Well not all that much has changed so there wasn’t much to tell, but since everything at my office is kaput (the new software program we just installed) and I can’t do anything else because MY computer is sporting the BSOD (blue screen of death) I thought this would be a perfect time to update you all on my progress. And we are making progress. I've included a bunch of medical stuff for all my medical friends reading this. The rest of you (like me) can just skim over it!

I finally got staged . Definition of stage: to determine the phase or severity of (a disease) based on a classification of established symptomatic criteria ; also : to evaluate (a patient) to determine the phase, severity, or progression of a disease.

With MF staging is determined usually by biopsies, however, because MF was found in my lymph nodes the automatic staging is IVB. (read: most people w/"normal" cancers staged at IVB are given a prognisis of a year to a year and half)! Yes, I win the prize for being staged at the highest stage given to MF patients. But then all can see how BIG MY GOD really is! So I’m not discouraged in the least about this staging! God is so good and He loves me so much (you all have proved that time and time again). So why am I staged at IVB? Well the T-cells are in my blood, in my bone marrow, BUT not in my organs. (though some contend you can't be IVB w/out organ involvement). There is a spot on my kidney, which I've had for a while, that Duvic (my doc at MD Anderson) wants to do a sonogram on but she feels its nothing.

I will be back in Houston on July 13th to see her. So I’ll have more of an update on what SHE thinks of my improvements.

Because of the T-cells being in my blood I not only have Mycosis Fungoides, but also Sezary Cell Syndrome. Se·za·ry cell: any of the large mononuclear T cells with irregularly shaped nuclei that are characteristic of the Sezary syndrome. Albert (1880-1956), French physician. Sézary was associated with clinics and research laboratories in Paris. He specialized in venereal disease and diseases of the skin but also did research within neurology and endocrinology. His publications covered such topics as disorders of the adrenal glands, tuberculin therapy, and antituberculous serotherapy. He was the author of a number of works on syphilis and its treatment and a dermatology text. I know more than you wanted to know!

I continue to have my photopheresis every 3 weeks (click on pictures link!) Here are the list of meds I'm taking (I know you can't wait!)

BEXAROTENE (Oral) (Capsule) This medication is also known by the following brand name: Targretin (Oral) Directions: TID (actually I take mine all at once!) 75 mg. Treats skin sores associated with a type of cancer called T-cell lymphoma. Another interesting tidbit w/Targretin: Do not eat grapefruit or drink grapefruit juices while you are taking this medicine. And of course my favorite side affects: Dry skin, itching, mild skin rash
And my favorite drug (NOT): Drug Name: INTERFERON ALFA 2B (Injection) (Injectable) This medication is also known by the following brand names: Intron A (Injection), Rebetron 1000 (Injection), Rebetron 1200 (Injection), Rebetron 600 (Injection) Directions: 3000cc 3x/week. It’s an “all around drug”, everyone should be taking it, *just kdding: Treats hepatitis B and C, lymphoma, skin cancer, genital warts, certain types of leukemia, and Kaposi's sarcoma (in people with AIDS). And the side affects of this is rather daunting: Possible Side Effects While Using This Medicine: Call your doctor right away if you notice any of these side effects: Allergic reaction: Itching or hives, swelling in face or hands, swelling or tingling in the mouth or throat, tightness in chest, trouble breathing  Dark-colored urine or pale stools  Depressed mood or thoughts of hurting yourself  Fast or irregular heartbeat  Fever, chills, cough, sore throat, stuffy or runny nose  Light-headedness or fainting  Muscle pain, weakness, or cramps  Nausea, vomiting, loss of appetite, pain in the upper stomach  Numbness, tingling, or a cold feeling in your hands or feet  Unusual bleeding, bruising, or weakness  Yellow skin or eyes If you notice these less serious side effects, talk with your doctor:  Problems with vision  Mild nausea, diarrhea, loss of appetite  Trouble sleeping. Yep I think that about covers body, mind and soul!

These 3 things each give me a 50% chance of putting my MF/Sezary in remission, however, we all know that God is going to cure me. And He will use what is at hand to do so.

All your prayers and love are my staying power, my upbeat mood, my ability to cope where I see many on the MF newsgroup despairing. Without God often there is no hope, but I have more hope than I certainly deserve.

Yes, I’m still itching, though sometimes not as bad. Here are my thoughts on how to stop me from scratching:
1. Put myself in a straight jacket. However, being half-Italian I’d never be able to complete a sentence because you know WE MUST talk with our hands.
2. Wear gloves. I’m already doing this because my skin is splitting like crazy. It’s the Michael Jackson look…however, I don’t think he gets his glove(s?) at Walgreen’s for $3.94! And since I get darker as he gets lighter might as well finish off the look.
3. I could do like the Bible says … if your hand offend you cut it off… but then who would bring you my updates?So I guess I’m stuck with itching and flaky, at least for a while!

The doctors said give photopheresis about 6 months and I should see some improvement.

Prayer requests: That I wouldn’t be so miserably cold. This is the only thing so far that has actually gotten me down. I spend all my energy trying to stay warm. That I’d quit scratching.  That the interferon shots will not make me sick.  That my hands would quit splitting. It hurts to do anything with them… like typing! And scratching (ok that’s feels so good, but I look for credit cards, keys, pens anything to scratch with… that’s bad) and handling paper, washing dishes, (good)… you get the idea.

Thank all of you for all your love and support and encouragement. Please forgive me for those of you I’ve not responded back… I intend too, but sometimes I get home and don’t even turn on my computer. Now you KNOW for sure I’m sick!

Update 3...Thursday and Friday at MDA

I’ve been prodded, poked, scanned and stuck so many times over the past 3 days, I feel like a voodoo doll. Sorry its taken me so long to give you guys an update but Keith (aka Dick) and I (aka Lisa) landed at MDA at 8:45 am last Thursday, June 2 and didn’t leave until 9:15 pm. Needless to say with only some chicken noodle soup in my stomach since noon that day, because of my cat scan, I was starving and so was Keith. But more about that later.My day: June 2nd: I had an appt. with a doctor talk about my photopheresis (remember where my white blood cells get to party in the tanning bed?) at 9 am. However when we went to the front desk to get my schedule it showed a chest x-ray for 9:00. Well someone told me Dr. Duvic wanted every test repeated and boy did they mean it because I’ve had TWO chest x-rays since March. Tip: If you ever come to MDA and they ask you to bring your films from scans or x-rays, call your doctor’s nurse and see if the Dr. will REALLY look at them! Keith and I carried them around all day the first day and no one ever asked to see them!The different clinics are very forgiving if you don’t make your scheduled appointment on time… its just a guideline we quickly learned! Thus, because we really wanted to talk to someone about the photopheresis, we went to the 8th floor to speak w/the doctor who we had an appt. with. But alas, the doctor I was to meet with wasn’t even scheduled to work that day. So we played talk to the scheduler. Needless to say that wasted about an hour, but in the meantime I did get my chest x-ray while they figured it out. Fortunately everyone is so helpful and nice that the mess-ups really didn’t get me down and when we got back from my x-ray, we were told yes I could start the photopheresis. That was a real blessing, because my scheduled worked out that I could have the 2 day treatment that day and Friday, which meant we didn’t have to come back the following week. We hung out at the photopheresis lab waiting for a doctor to give the ok for my treatment. Finally they decided to just let me do it and then have the doctor come talk with me. But first I discovered I have to give blood before each photopheresis to see if my hemoglobin or heroglobin is ok. Did I mention I hate having my blood drawn? Actually, what I really dislike is having needles stuck in me by people who think that doing it real slow and saying, “now this is going to sting...” or my favorite: “a small stick” makes it better! So after a blood draw, some soup and I settled into my first session of photopheresis. It wasn’t too bad. I laid (layed? I can never get that right!) in a comfy bed with my arm (see photo at end of this trirad under photos) stretched out, palm up with tubes stuck in me that takes the blood out, spins it around, and puts it back in minus the whie blood cells... for 6 cycles. When the 6th cycle is finished and it has taken all my white blood cells it can manage, and put them in a little bag, then the bag empties into the tanning booth (it’s kind of like the Krispy Kreme, donut conveyor belt… or that snaking line at any amusement park. Its really neat in that the machine can tell how long your wbc need to be in the tanning salon. On Thursday they went thru the bed for 32 minutes. Then on Friday, it took 56 minutes! Guess they heard about the great party the others had on Thursday. All you can feel is when the machine is pumping out blood a thumping where (they tell me) the needle is hitting the top of my vein. While my blood was being washed, Keith and I watched a movie… The Phoenix, it was pretty good. I wanted to watch the Notebook, but we weren’t sure how my sobbing loudly would affect me or the people around me. I’m really blessed to have good veins and had a pretty good pumping rate, thus making the process go faster. Finally we got to see a doctor who explained more of the process I was undergoing. The best news is he thinks in about 12 procedures (a procedure is one day’s worth) I should see a reduction in my itching!!! So I’ll schedule treatments, every 3 weeks for 2 days until who knows when. One thing Dr. D. said that if we can keep me in remission with just the photopheresis. They say this cancer can never be “cured”, but they don’t know MY God!!!So I’ll continue to go to Houston every 3 weeks for my photopheresis, give myself Interferon shots 3xs a week, take my Targretin pills 3x a day (at $30/pill… thank heavens for insurance1), soak in bleach every other day and coat myself in Triamcinolone cream and then wrap myself in warm towels every night! Whew makes me tired just thinking about it! I’m doing amazingly well. The shots have not made me ill, or even a little bit fluey as they said it would. I do find myself getting tired more easily, so I’m trying not to be me, and get some rest, slow down, and go to bed at a reasonable hour! \Now for my top 10 reasons why I know prayer works:10. I’m no longer yelling at my kids so my eldest no longer has to say “I forgive you mom for saying the D word”9. When I shave my legs, I actually see hair on the razor rather than dead skin!8. My dry skin is greatly reduced!7. The itching is a bit better. Keith says I’m not scratching so frantically!6. I’ve not had any of the side affects they say I would have.5. When Keith held my hand the other day, he said, wow it actually feels smooth.4. When Alex put lotion on my back, she said the same thing. (didn’t realize I was like a lizard!)3. I think I see spots of the real “me” (color) beginning to show!2. Thru this process since I’ve had my blood pressure taken so many times, I realize I don’t need my hypertension meds anymore … my blood pressure is running 118/68 with out my meds! And the number reason I know prayer works1. Since I’ve been off the bp medicine, I’m not near as cold!!!!Thanks again for all your love, prayers, encouragements, and offers to help… I could go on and on. Again feel free to pass this on. If you want to be in my “special” e-mail list to make sure you get my updates, see the link below. Love you guys, and keep praying! God is being so incredibly gracious to me. We are going confound the medical field when I’m cured!!!!P.S. I’ve not proofed this like I should, but I’m tired now ;) and hope you will overlook any faux pas. . (yes Debra it’s true, I didn’t read it out loud or take a piece of paper and go line by line!)

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA, June 1, 2005
I had typed all my goings on today and then I lost it. So here is the brief edition:Saw dr. d. and here is what they are going to do.I need to have bone marrow test, CT scan of my entire body (yummy… that stuff they put in your veins makes you all toasty warm). And they hopefully will start photopheresis tomorrow..This is where they take all your white blood cells and they go to this tanning bed and little waiters take their orders for pina colada or white wine, then they come back to my body all happy No seriously here is what it is: Photopheresis, also known as extracorporeal photochemotherapy (ECP), is a form of apheresis therapy. It involves light-activated treatment of circulating blood cells outside the body. "Photopheresis may act by modifying the patient's own immune response to his/her disease. On this basis, the therapy is being extended to graft vs. host disease, organ transplantations, and early scleroderma and other autoimmune diseases." - roswellpark.org Here is how it’s down (you thought I was kidding!)Procedure outline:1) The patient ingests a light-activatable drug, called psoralen2) An IV (intravenous) line is placed in the patient, a drug called psoralen is sometimes given.3) Blood is temporarily removed from the patients. White blood cells and are separated out and the mixed outside the body with the patient's plasma, saline, heparin, and 8-methoxyposoralen. The preparation is then passed through a device where it is exposed to ultraviolet light. 4) The treated mixture and untreated blood is combined and returned to the patient. The procedure takes approximately 4 hours. I will have done every 3 weeks and it takes 2 days and can only be done here at MDA. We don’t’ have no tanning beds for white cells in Austin!I’m going to be taking Interferon shots. They build up your immune system but make you feel like you have the flu! Make sense to me! I take those 3 x a week. Next week I’ll take Targretine pills all this is to make my immune system better. If I get better we may not have to do chemo. But at least this will get my body in better shape for chemo.Also, I take bath with ¼ cup bleach every other day, get sprayed down with vinegar/water mixture and then slather this cream all over me, while keith is soaking towels in warm water that he will then wrap me in for 20 minutes. Suppose to help me w/my itching/dry skin. Dr. D said I’m cold all the time because my skin is not doing anything it’s suppose to do… like maintain heat! Also, she said she sometimes will put people with level of staph infection in the hospital, doesn’t think she will with me. I gave blood twice today… once for the record and second time because I signed up to be part of the clinical research. Didn’t realize what paper I was signing.And then I got my playboy shots. Yep, they took pictures of me in my almost birthday suit! Ok I’m off to soak in some bleach… I’ll get white one way or another.

Finding the right Dr.... God intervenes!

... My life so far...
Where do I begin?? Ok, here is a summary of my life AC (after cancer)! As you know I was scheduled to go to MD Anderson on June 2nd to see a Dr. Heigimistercan'trememberhowtospellhisname. BUT, I really wanted to see Dr. M. Duvic. Not only because she's the leading specialist, world-renown, on the cutting edge, thinking out of the box, Mycosis Fungoides super woman, but also because I've heard she's real cool and groovy! So I called her office. They took my information. I called back... they said you already have an appt. w/an oncologist here at MDA. Besides you can't see her until June 27th. Keep your appt. w/the Dr. H guy and maybe he'll send you over to Dr. Duvic. Meanwhile in a Dermatology office in west Austin, Dr. Shaffer, my derm doctor is putting together a packet along w/pictures of Moi's arm, neck, face (I shudder to think what they look like) and getting ready to fax them to Dr. Duvic. His nurse calls Dr. Duvic's office. Her office declines the packet to be faxed, because, after all I ALREADY HAVE AN APPOINTMENT. But bless Dr. Shaffer's nurse she send them anyway. Dr. Duvic sends an e-mail to her schedulers (now how cool is that???) and says, make me an appt. with this Lisa Renee Atkinson person. Yesterday I get the call... they are babbling something about an e-mail and I can now see her and they need to make an appointment and ... they'll call me back. That's when I hit the wall. As many of you know I've been pretty, well how do we say it? Manic! So I crashed. Went to bed at 6:30 pm last night ... but feel much better today.So today I call and say Am I going to see Duvic??? When can I see Duvic???? Can it be sooner than 4 weeks???? And the answer to all these questions were Yes, Yes, and Yes. And I get to see her a day earlier than I was going to see the Dr. H. guy!!!! So a week from today, I'll be at MDA having who knows what done to my who knows what!Many of us all along felt like she was the one I was to see. So thanks for praying, thanks for keeping me in your prayers, they are the glue that is holding me together.You have all been AWESOME!!!! I love all of you guys who are reading this more than I can express. My family is blessed by you, I'm blessed by you!I'll try to write every 2-3 days and let you know what's up! What's down and what's sideways!

The Beginning... suspicions of Cancer (and some background)

Backgound: Diagnosed w/Psorasis in September 2003. Oral medication seemed to help. As my skin got better itching increased. Began light treatments in Nov. 2004. All that happened w/that was I got really dark. Strangers in the grocery store would jealously ask, "where did you get that tan??" We also began every test we could think of... all my blood tests came back normal. Who knew there was a special blood panel just for MF?? Then I noticed I was losing about 2lbs every 4 days. Now this was good news! But scary.

Had a biopsy by my Dermetologist in March. Results: little psorasisis and photo dermetitis. (When my derm had the pathologist recheck after my diagnosis, he changed the diagnosis but wrote [perhaps to cover his you-know-what??], These findings are consistent w/those of CTCL lymphoma. This case is somewhat unusual in that there is a rather significant componment of spongiosis which is uncommon for cutaneous T-cell lymphoma. That's me: uncommon

I noticed a large lymph node in my thigh. When I mentioned this to about the 100th doctor I had been seeing my primary finally said you need to go see this surgeon. I met with Dr. Marcus and he and I both agreed that it was only a symptom of me scratching so much. He wasn't worried at all and scheduled my surgery in two weeks. Which really surprised the scheduler. She kept saying are you sure? I was like, oh it's no big deal. After all my blood tests kept coming back normal.

Finally, had appt. w/Dan, my primary doctor, this morning. Assured me he's doing everything possible. Worried about cancer. Having CAT Scan tomorrow in stomach and pelvis. Said don't worry if they see any shadows may not mean anything. I have tinneatis (sp??) in BOTH ears. My left one was totally blocked all weekend and couldn't chew at all. Because of the ear infection I rescheduled the surgery to have my lymph node removed. Now it will be on May 10th. Yea, 4 days before my fifth birthday. Happy Birthday to me! But on to the cat scan.

The cat scan came back positive. On April 28th the cat scan report noted 5 large lymph nodes. The largest being 3.3 x 2 and the smallest 2.3 x 1.1. Also included in the report was the comment about multiple other smaller lymph nodes.

Impression: Lymphadenopathy within both inguinal regions. Pattern worrisome for lymphoma.