CTCL/MF information posting

[Lisa]

[barb]

[Lisa]

Barb, I hadn't been on this web site for some time. I just checked it and found your message. I hope you have found some help by this time. I know MD Anderson in Houston is doing lots of different trials on medications for CTCL. My husband continues to see Dr. Duvic in Houston, and she helped him tremendously! He still takes the oral Targretin capsules (VERY expensive, especially if you do not have insurance), but the thing that has helped him the most is a topical chemotherapy (this is an ointment which we apply every night. It contains the chemotherapy agent which is killing the cancer cells). The medication is called "mustargen," and it too is very expensive. I hope that you are aware that you can contact the drug company directly and they will sometimes have special programs to either give the medicine free or at a vastly reduced rate. I am concerned that your doctor has the attitude that living with it "a little while longer wouldn't hurt." The longer this cancer goes untreated the more difficult it becomes to get on top of it. You need to insist that more be done! It is your health and YOUR life! I pray you get the help you need - if not from the doctor you are now seeing, then from a different one. (By the way, My husband's main medical providers are DERMATOLOGISTS...not internal medicine, general practioners etc. I am not saying those doctors aren't any good, rather that this cancer is so rare that they don't have the expertise needed. Even many derotologists don't have the info necessary!)
A thought I just had is that if you are near a "teaching" hospital - usually associated with an university - that would be a good place to start with a different doctor...and they usually have provisions for people without insurance. Good luck! Lisa (and by the way Barb, CTCL is a blood cancer, not a skin cancer. It just shows itself on the skin).

[QueenRoyal]

my son has CTCL at 20 yrs old. looking for people in his age group. He is finished with radiation for the last 14 weeks, now on to chemo topically. no road map... no one with a story his age, need some support please

Regina

[Tampa Mark]

Greetings all. My journey started with a lesion on my left sideburn last summer. My GP cut it off and had it biopsied - conclusion was a Basil cell. Now in retrospect, I wonder if it might have been a CTCL-MF that the lab mis-diagnosed? What are the possible implications? By the time I got to Florida this fall, I noticed the boil type lesion on my chest had gotten a lot worse. It had a lot of thickness, scabing, itched and burned like crazy. I made an appointment with a Dermatologist at Morsani Med Ctr. Tampa - Dr Nelson. Dr Nelson identified several other spots on my face and chest that were suspect. Initial biopsy conclusion was possible Squamis?, but inconclusive. He immediately had me see Dr Glass for a more advanced biopsy at Moffitt Cancer Ctr. I feel extremely fortunate to have such a great facility close by. My diagnosis of CTCL-MF came on 2/9/2012. While I'm sure Dr Glass is a superb Oncologist (authored a paper on CTCL-MF), his ability to share knowledge with this patient is sorely lacking. He told me no problem, we'll just zap it with some radiation and you'll be fine. I don't recall any blood work or other scans being done. Dr Glass and his associates just palpated my neck glands and said you'll be fine. I do recall him telling me that I would die with CTCL-MF, not from it. I asked if juicing was an option and his response was that there was no clinical evidence to indicate it would work. I have read several books by Dr Joel Fuhrman and Johanna Budwig and I thought if my time came, I would definitely juice it. I guess I lack the courage of my convictions. After a short discussion, we decided to try UV Laser treatment as a least invasive therapy. Dermatologist Dr Cohen (UV Laser)- Morsani gave me a topical ointment (Fluocinonide) and explained that Laser treatments would require 20 + visits and that radiation would be a more effective therapy, and that the new technology is extremely accurate with no collateral damage to nearby tissue. I had tried applying Aloe Vera to the lesion with moderate success. It appeared healthier with less plaque but still itched and burned a bit. The Fluocinonide ointment has made a huge difference in just 2 weeks. The itching and burning is gone, the flesh is pink and much healthier looking. After the discussion with Dr Cohen I have scheduled an appt with Dr Lavey Radiation Oncologist at Moffitt. My first radiation session is scheduled for tomorrow 3/28/12. I think that a lot of my confusion and vagueness comes from going to all these Dr's alone. I've meant to bring a pad and paper to take notes, but have forgotten each time. I'm scared and disorganized. If any of you have a loved one who can go to the Dr's office with you and take notes, I think it would be very beneficial. I'll post again tomorrow after my first radiation treatment, if there is anything to add..

One more thing - I recall Dr Glass making a vague comment about not understanding why my symptoms weren't more numerous. I have to wonder if my nightly elixir that I take for my arthritis and prostate might have something to do with it. Or, perhaps some combination of the vitamins? I have been taking most of these vitamins and the slushy for roughly 8 to 10 years.

Over the counter Herbs, Vitamins & Holistic Elixir

Enteric Aspirin 80 mg
Garlic 1000 mg
Vit D3 2000 IU
Alive Daily Multi Vit – Mens ?
Lycopene 10 mg
Glucosamine & Chondroitin 1500/1200 mg
Omega 3 Fish Oil 1000 mg
Flax Seed Oil 1300 mg
Calcium w/ D 600 mg
Curcumin 400 mg
CoQ10 w/ Omega 3 60 mg

I make a slushy by mixing 6 ice cubes with the below ingredients in a blender
Cold Pressed Flax Seed Oil 1 tblsp
Braggs Apple Cider Vinegar 2 tblsp
Apitherapy Raw Honey 1 tblsp
Greek Yogurt 2 tblsp
Sliced Banana 1 banana
Mango Nectar 8 oz

In closing I want to thank the moderators of this forum for giving us a place to share and learn from each other.
Kindest Regards to All,
Mark

[Tampa Mark]

Earlier today I met with Dr Robert Lavey & his nurse Karen. Dr Lavey outlined my options, and explained the radiation procedure. He said the treatments will last 2 weeks. According to Dr Lavey, CTCL-MF can be removed by radiation, only to return at a different location in a matter of months or years, or conceivably never again. He said that it quite often doesn't return for many years. The most important tidbit of information that I got from him is that just because i'm experiencing CTCL-MF lesions, it does NOT mean that it will later go into Sezary or any other more serious forms of CTCL. This also explains why Dr Glass didn't order any of the other tests since only about 10% of us will get the more serious types. Even the more serious variations of this are quite manageable if caught early enough.
The Fluocinonide Ointment that Dr Chase prescribed several weeks ago is working wonders on the large chest plaque.
I feel very relieved after meeting with Dr Lavey and Karen today. Finally this disease is starting to make sense and although it may require future trips to Moffitt Cancer Ctr to keep it under control, at least it is manageable.
Mark

[sharon]

Thanks so much Mark for posting this info. I hope it can help others.

[Tampa Mark]

My last radiation session was Friday 4/20. Dr Lavey & his Nurse Karen were wonderful. Several times during treatment I bumped into one of the 2 of them and each time they took a few minutes to ask how it was going and answer any questions I had. The radiation is not painful and the Radiation Technicians at Moffitt were wonderful. My follow-up visit with Dr Lavey was very routine. He repeated what he earlier said about prognosis and chances of the cancer returning. I will be following up with my Oncologist Dr Glass in 6 months when I return to Tampa. In retrospect, I feel a little foolish for posting this after befriending many brave people over the past 3 weeks who were fighting for their lives. If you, or a loved one are diagnosed with CTCL-MF, consider yourself lucky. It's unsightly, annoying and inconvenient but in the vast majority of cases very treatable. It can itch and burn like crazy, but the topical ointment Fluocinonide gave me immediate relief and seemed to make the plaque melt away. I will leave these posts up to hopefully alleviate someone else's apprehension at the onset of this disease. Best wishes to all. - Mark