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!