CTCL/MF information posting

[Lisa]

This post is for information. I have been through the list of all participants on this web site, and find only one other person with CTCL/MF (Cutaneous T-Cell Lymphoma/Mycosis Fungoides). I hope the following information may be helpful to others searching for an answer. My husband began with a red spot on his forehead in 2002. I, thinking he had suddenly presented with "skin cancer," immediately got him in to the doctor. He was told he had psoriasis, not to worry, use an ointment and T-gel shampoo, and it would clear up. Four and a half years and many many doctors later, with red patches showing up all over the body -- head, neck, face, back, arms, chest, legs, buttocks -- we had received diagnosis' of Lupus, Rheumatoid Arthritis, "obviously psoriasis," a reaction to multi-vitamins or his blood pressure medication, and many others, finally being told CTCL/MF in November of 2006. The attempts to get an answer were extremely frustrating, especially as his skin got so dry it had huge "blister" type sores which would crack and bleed. We got to the point of using straight olive oil, then shea butter in attempt to soften the skin to keep it from cracking. Nothing helped.
After finally getting a diagnosis, the dermatologist here sent him to MD Anderson in Houston, where the diagnosis was confirmed. There are medications to help control, but not to cure. My husband has been using Targretin gel and capsules, Triamsinolone ointment, Clobetasol ointment, Elidel cream and Protopic ointment, and taking multiple fish oil capsules/ day. The regimen with all these topically applied ointments takes about twenty minutes twice a day, but the results are worth it. Though the spots aren't gone, they have faded enough he will once again wear short sleeved shirts.
The interesting thing about his situation is that in 1996 he had an old graft replaced in his aorta. They changed from dacron to gortex, and the doctor in Houston said that could be what turned the fighter T-cells on...attempting to fight the new foreign body. Between the time he had the new graft, and the diagnosis of CTCL, he had many bouts of iritis/uveitis, and the eye doctor was the first to associate the eye flares with the back aches (which occurred each time there was an eye flare), which finally tied in with skin flares as well. This means that all those years of eye flares were a time when the CTCL was working hidden in his body. Also, a word of warning...one of the earlier trials at getting the skin under control was to use UVB photo therapy. Because of the topical ointments being used at the same time (which were somewhat immuno-suppressive) he ended up with a very large squamous cell cancer on his nose which necessitated Moh's surgery and 13 cuts of skin removed before they had all that cancer. He had no skin left on his nose, and had to have re-constructive surgery.
He also has had kidney cancer (Renal Cell - clear type). Again, the doctor in Houston says that since he has so many foreign objects in his body (surgical clips, wire holding his chest together, graft) this may be what turned the T-cells on. She has mentioned she has two other patients with "foreign bodies" - one being a knee replacement - who have then presented with CTCL. I hope this may help someone looking for answers. Lisa
UPDATE 16 December 2008:
My husband has improved from >22% skin involvement two years ago to 2% skin involvement at his appointment earlier this month. We are now working on reducing the oral Tragretin capsules, as they have severely impacted his triglycerides, and with his previous cardic situations we don't want to add to that situation. Please see below in my response to Barb to see what has helped him.

[barb]

Hi, My name is Barb. I saw your blog when I was searching for more info
on ctcl. I had a biopsy about a month ago that came back positive. I also
had blood work done and at this time it is not in the blood. I really don't
know what stage I am in because I don't have insurance and I can't afford the test. I know that it has been about 6 years that I have been living with it. The itch is the worst. I have a steroid salve, but it doesn't help much. The doctor gave me a histamin to take. I can only take them at night or when I don't have to do anything as they make me so tired.
I already get tired easily. My doctor did say that was normal. I have tried to find some place to get some help, but to no avail. The last visit I had at the doctors, he told me he would try to find a trial or something that I could afford. He also said I have lived with it this long a little while longer wouldn't hurt. I feel kind of silly. I tell my freinds I have cancer, and they
think that a skin cancer is not that bad. I had one friend that asked me how long I was going to live. I don't know!!!! At this point I don't have any tumors. I do have a cough that gets on my nerves. I don't know if that is a part of this or not. I guess I just wanted to talk to someone else who has the same thing that I have. Take care of yourself.

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