I have just been diagnosed w/ Folliculotropic T-cell Lymphoma and can not find a lot of help on the net. I would like to talk to others. I am very scared from what I have read so far. Thanks.
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Folliculotropic T-cell Lymphoma....I need others to talk to...
7/ 8/10 6:47pm
Stumbled across this during a search. We're in the Atlanta area too. My husband has a t-cell lymphoma that has been dormant for 4 years. He's had a spot recurring on his lip and we're treating it with what the dermatologist calls a "topical chemotherapy" that will turn his lip into "raw hamburger." (Nice of doctors to prep you, no?) But now I'm wondering if there's some kind of correlation as he has spots on his scalp too. Could you be so kind to pm me, particularly with your doctor's name? Many thanks.
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I was diagnosed stage IIB, during July of this year at the age of 31. I have a 10 month old son, so I understand your fear. I will complete my treatment schedule of PUVA & Intron-A next week (have been in treatment since August). Below are several good sites.
http://www.lymphomainfo.net/lymphoma.html
http://www.cancer.gov/cancerinfo/types/non-hodgkins-lymphoma/
I also keep track of information released during annual conferences for ASCO (American Society of Clinical Oncology) & ASH (American Society of Hemotology). Blood Journal has abstracts available online for free which allow you to stay on top of the current research.
Thanks it is so nice to get a response. Can you tell me what the treatments are like....how you feel. At this point I have become so depressed that I just stay by myself. I meet with the oncologist tomorrow. Best of luck. Vince
Aug. 4 - Sept. 19 = PUVA 3 times weekly (starting at 30 seconds, moving up 20 seconds each successive visit)
Sept 19 - Dec 22 = PUVA 2 times weekly
Dec 23 - Jan 26 = PUVA once weekly
Once I reached 8 minutes in PUVA, I had to be bumped back down because of burning. I am very fair, so I have maintained a constant pink hue. Interferon is a subcutaneous shot 3 times weekly since August. I have this right before bedtime so that I can sleep through the side effects. The Interferon side effects have only been a fever. It is best to take Tylenol right before the injection.
PUVA has been more of a problem. The psoralen pills cause nausea. This can be lessened if you eat at least 30 minutes before, & take a ginger pill 20 minutes before the psoralen pills. After the UVA treatment, initially I felt extremely nauseous, fatigued, & had a headache for 2 hours following. Now, approaching 50 some treatments, I only have a slight stomach upset.
For the most part, the doctors are extremely pleased with how I have responded to treatment. Initial treatment for FMF usually doesn't work. I still have a few new red patches, but these are simply red spots & not thick plaques. I will maintain visits to my dermatologist every 2-3 months for a continued checkup schedule. The next line of treatment will most likely be the nitrogen mustard or a retinoid. From the literature, the side effects are extensive. I have compiled an excel spreadsheet of the various medicines used for treatment of FMF, including the newest ones released for human trials. I don't list the side effects, but have info for how the medicines work & how administered. I would be happy to send it to you.
Also, please consider going to see a councilor. I started going 2 weeks ago, and am already feeling better. I had previously struggled with Dysthamia, & the diagnosis did not help. No matter how long we have, we need to enjoy what time we do have to the fullest.
What is FMF? The meeting with the oncologist was not very helpful. He told me he had never heard of Fulliculotripic T-cell lymphoma. He call me back later and told me they would treat it as cutaneous T-cell lymphoma. Monday is a cat scan with the stuff you drink. I am already on the mustard....What did you hear about the side effects from that, I have only used it once because it comes in a bio bag and tells you to apply w/a rubber glove.....I have to put this stuff all over my body.....most places.....and I should be using a glove. If it is not good for my hands what is it going to do to my body? Oh, they want to remove a lymph node and check it. I just want this over and it hasn't even started. I hope you feel better. Hug your kid!
Folliculotropic mycosis fungoides (FMF) is a variant of cutaneous T cell lymphoma, characterized by infiltrates of abnormal T-helped cells involving the follicular epithelium, and variably involving the overlying epidermis. Basically, this is a lymphoma resulting from a malfunction in the immune system which first shows up in hair follicles. T-cells are responsible for physically killing infectious cells. Most lymphomas are caused by a malfunction of the B-cell. B-cells chemically tag infectious cells for the T-cells to attack. Some studies suggest a more aggressive course and poorer prognosis for this variant of MF: FMF is considered more difficult to treat because the follicular cells are protected from the effects of superficial therapy. Therefore, first line topical treatments for early stage disease are usually not effective. When staging FMF, a B is always added since the skin plaques are classified as tumors. FMF was identified as a separate entity from MF in 2007 based on the way it reacts/or does not react to treatment. There are only about 100 diagnosed FMF patients in the US, which is why your oncologist has not heard of the disease. Since he has not, you might want to do research to find a specialty clinic that has FMF patients in your area.
Mechlorethamine HCl (Mustargen) - http://www.chemocare.com/bio/nitrogen_mustard.asp
Side Effects Include: Nausea, Mouth Sores, Fatigue, Hair Loss
Specifically stops cell regeneration during DNA replication. Therefore, since it is topical, they are trying to limit the area affected by the mustard.
You have done great research. Very helpful. I had my cat scan yesterday and the results of a HIV test (neg) they told me HIV runs hand and hand with this disease. I informed them I was only putting the mustard on my patches and they told me to cover my entire body....last night for the first time, yuk. This moring my chest is red and burning. They are trying to arrange a meeting with a specialist in Atlanta. Thanks. Where did you find a support group? Oh, they also want me to start light therapy. You are about to finish that, correct.
No. HIV absolutely has nothing to do with FMF. Although they are both malfunctions of the immune system and the T-cells. Your doctor(s) are confusing it with Kaposi Sarcoma. Statistics for this lymphoma are: average onset age is 60, occurs more in often in African Americans, and for men versus women. I am not sure why they are ordering PUVA with the nitrogen mustard. Usually the first line treatment for FMF is PUVA and Interferon. PUVA & topical nitrogen mustard is a treatment regime for regular mycosis fungoides, not FMF. Your doctor(s) is not informed and this could cause problem. Push to see the specialist in Atlanta.
I see a regular councilor, not a cancer support group. I looked up one from the list my insurance provided. He is really nice. There are several support groups available online. I would start with the following:
http://www.cancer.gov/cancertopics/support
http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661019/k.8FE9/Cancer_Support.htm
http://www.cancer.org/docroot/home/index.asp
http://www.cancerlinksusa.com/support/index.asp
I just finished PUVA treatments. This consists of taking psoralen pills 90 minutes before standing in a full-body UV cabinet. PUVA is considered to be light chemotherapy. The treatments stop the DNA replication of the cancer cells. PUVA penetrates 4 layers of the epidermis, compared to the narrow-band UVB light treatments. Below is an excellent article discussing both PUVA & UVB.
http://health.nytimes.com/health/guides/disease/psoriasis/phototherapy.html
I have no insurance and have been going to the VA. Yes, I will push for the specialist in Atlanta. I will check into the councilor. Thanks. How are you feeling? Better knowing this is almost over for you? I hope so.
It is nerve wracking waiting to see how long remission lasts. Especially knowing that the next level of treatment will be twice as difficult.
My e-mail off this system is aiders37399@mypacks.net, I can't stand this it is too slow for me.....the e-mail. I would love to talk by phone, if you are okay with that? What do you mean the next level of treatment will be twice as difficult. For me? I can't handle it now. I will not make it through much more. I HATE THIS! If you don't want to I will understand. If you do, after contact by e-mail we can swap numbers and I will pay for any charges. I have free long distance. Thanks.
I don't have a computer at home. I only use my work email address. So I can't give it out.
I meant that this first level of treatment for me, has not been a much of a problem at all. Despite some upset stomach & headaches, I have been lucky.
I am partial to my hair, the next level of treatment will make it fall out. I am ashamed to say that upsets me the most.
You can do the treatment. There are kids as young as 5 years old at St. Jude Hospital, who go through chemo. We can deal with the treatments.
I also have FMF so i guess this means we are 2% of the population. Vince, I live in Atlanta. Where do you live?
I also live in Atl....work in Atl, live in Gainesville. I would be willing to get you my number so we can discuss things in person. I need to find someone else to hear their experiences. Thanks, Vince.
i have emailed you at the address you previously posted. did you see it?
Yes. I look forward to making contact. Thanks again. Vince
I'm concerned about possibly having this lymphoma. Would appreciate being able to talk to any of you and how you were diagnosed. Really at a loss and so frustrated. Hope you are all doing well.
Thanks,
Tammy
The diagnosis took some time. I originally thought I had psoriasis. I went to a dermatologist in 2002 for a large patch on my knee. He gave me some ointment which did not help but I did not go back for a second opinion. In 2007, while pregnant, I started to get numerous other patches. The original patch more than doubled in size and started to crack and bleed. A different dermatologist suspected FMF, but initially treated me for Pityriasis lichenoides, commonly known as PLEVA. The standard regime for PLEVA is antibiotics and a topical steroid. After the prescribed time period went by, and no reduction in spots, he then ordered a skin biopsy. It was inconclusive. So, he ordered a second biopsy, this time from two different spots. One of which was the original spot on my knee and the newest patch. To aid in his investigation, he called on a specialized team at the University of Iowa Hospitals & Clinics Dermatology department. The UIHC Derm clinic has a specific lymphoma clinic comprised of dermatologists and oncologists which meet once a month. This is one of the few FMF clinics in the US. With additional eyes, they were able to conclusively diagnose my FMF. The UIHC Lymphoma clinic is has a large FMF group, of which I am number 16.
One you are diagnosed, it is a simple matter to run MRIs and blood work to stage the disease.
My Dr. at this point (VA) is refusing to stage mine. I have a second opinion in March with Emory Hospital in Atlanta and hope to have it staged. Although I really do not want to know at this point.
Why refusing? Because they don't have a definite diagnosis? Or because they don't have any experience with this variant? You should find out why for sure.
You will sleep better at night if you have a firm grasp of your treatment. Make them perform the tests to stage the disease. You, as the Patient, have the right to know all the information for the disease and treatment options.
Thanks for the reply! My situation started with a rash on my hand at age 13 I'm now 37. I didn't see a Dr. about this because everyone told me it was excema. All that time I lived with it and it slowly grew from one finger to the entire palm. When I was about 30 I started to get this little bit of an itch on the crevice of my right thigh. Again thinking it was just another spot of excema I just put up with it. Through the years it also spread to about the size of my palm. This past year I have had the rash biopsied on my thigh. The biopsy was after treatment with steroid cream which seemed to make it worse. From what I have read you shouldn't biopsy unless you have been off creams for 2-4 weeks. I have been experiencing little itchy bumps pretty much everywhere and noticing a general loss of hair. And as of recent I will just start itching and there will be a little area that is skin colored. That will last for a few minutes and go away. Have any of you had this happen? The Dr. took a biopsy of one of these bumps and diagnosed it Perforating Folliculitis but I look at the histology of FMF and it seems really close. I guess I want to know if the atypical cells I read about are easily identifiable or if the different tests(gene rearrangement, etc.) would be helpful? I'm guessing your second biopsy wasn't clear either given the special team? I'm just really concerned because this seems to have really progressed in the past year. I know that if this is a form of lymphoma they are usually slow to progress but occassionaly do speed up. I have five children and would really like to get to the bottom of this as to be the best mom that I can be. It weighs on my mind quite a bit!
Even if they cannot find something from the biopsy, they should do blood work, such as a CBC. In my case, the number of white blood cells were indicative of something abnormal at work. There also is the method of immunochemistry which allows them to test which lymphoma is present at a cellular level.
At my worst, I was developing new patches every week. I also had an increased tendency to develop large, blotchy hives in areas where clothes would rub, like my inner thighs. These would disappear in a day or two.
Since FMF is so rare, doctors rarely encounter it, and have difficulty diagnosing it. This also means that there is little research available on how it presents itself in different people. For example, most people have large patches on their face or on their head. I (knock on wood) never developed any patches on my head/face. With the exception of one on my wrist, all my patches were on my stomach, buttocks, or legs. I also responded to the inital PUVA/Interferon treatment much better than they thought I would. I have been in complete remission for exactly one year. Everyone is different.
That is truly wonderful that the treatment worked so well for you! And to be in remission a year is awesome!!! If you don't mind me asking what in your WBC's were off? I go to my GP tomorrow so I would like to ask him about it. It really does stink that there is not more known about this disease.
Thanks for the website. I've had my blood drawn several times this year and pretty consistently my lymphocytes have been low or low/normal they never get very high. And my neutrophils have always been on the high side. The overall WBC has varied up into around 10 and as of lately more around 5.5. To me I wonder if this says anything but the doctors haven't seemed to concerned. You are the first to say your bloods were off so it had me curious.
One month ago I was diagnosed with follicular mycosis fungoides (FMF). I was told it's rare and difficult to treat, so I very much appreciate what you have shared about this medical condition. Question - what do you know about Bexarotene, a relatively new medication that has been successful in some cases?
Also, How successful has the UVA and nitrogen mustard treatment been for you?