When suffering does not destroy you, even though you have been to the edge of the abyss, you know something that you cannot know in any other way. Someone else is sustaining you. You are indeed living by a life not your own. Or as I love to say, "Your life is not about you." It is henceforth, most truly, about God. And you are merely "free sample" of what God has always been doing. - Quote from Richard Rohr

November 23, 2005

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!

November 09, 2005

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.

November 08, 2005

..."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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