Folliculotropic T-cell Lymphoma....I need others to talk to...

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