I am new to this site and I am glad that I found it. I was diagnosed with cutaneous T-cell lymphoma last November. I am at stage 1a (patch stage). I haven't been able to get a lot of information from the doctors other than that it is a rare cancer, slow growing and incurable. I have been using a steroid cream for 3 months with not much response. I have a follow-up appointment at the end of this month and don't know what to expect.
Anyone have the same condition? Any information is greatly appreciated!
Joanna,
Because this is a rare disease, it is a good idea to consult with a specialist. You can get a lot more information on the Cutaneous Lymphoma Foundation website: www.clfoundation.org.
Joanna
I’m new as well and diagnosted with the same (cutaneous T-cell lymphoma at the patch stage). My first form of treatment was radiation to the area (near my cheek and ear lobe) where I had a node removed. Immediately following radiation treatment, there were signs of patches appearing on other parts of my body. At that point, my onocologist scheduled me for chemo(6 sessions of CHOP). I will receive my last treatment this Thursday. I was referred to Massey Cancer Center(Virginia) and the recommendation was a stem cell transplant, in attempt to put this into remission. My options are to use my own stem cells or that of someone else(donor). Fortunately, my sister and I are identical twins so the request for a donor may not be necessary.
Ronnie
Thanks for sharing your experience. I am still a little skeptical of the doctors I've seen. I went to Sloan Kettering Cancer Center here in New York and the doctor is a specialist in Non-hodgkin's lymphoma. They seemed too laid back about everything. They gave me a steroid cream and said to come back in two months. I have an appointment next week. The dermatologist that diagnosed this by doing a biopsy pretty much said the same thing I was told at the cancer center - that this is a rare, slow-growing cancer and that it may or may not go into remission. They never gave me options like radiation, chemo or stem cell transplantation. They told me that if the cancer spreads to a lymph node, then they would treat it with chemo. I'm going to a conference in Washington, DC held by the Cutaneous Lymphoma Foundation on April 9th to try to get more answers. If you live close by, you might want to go too. Their website is: http://www.clfoundation.org/
Will let you know how it was.
Joanna
Hi Joanna,
I also have Peripheral Cutaneous Non-Hodgkins T-Cell Lymphoma Mycosis Fungoides. I was diagnosed a couple years ago and I was already at stage 4a. The most important thing I've learned through this journey is things can change fast, which can be good as well as bad. I've done my rounds of Targretin and PEGASYS injections, Non-pegalated Intron A, Vorinostat and now I'm on Ontak. So many factors alter where you go based on other medical issues you have. I've had the benefit of an Oncologist that has allowed me to be a part of this process and learn the pros and cons to various methods. I would be happy to share information with you, however, I would caution that ALL decisions should be discussed between you and your doctor. Maybe I'll have something you can take to the table when you see him. I wish you all the best.
Sandy
I also suffer from this horrible cancer and I have also tried alot of treatments but the one that worked best for me and I was at stage 2 and brought me to the point of there is not much left. Total Skin Electron Beam Therapy its radiation but I am telling you I saw huge changes and I was told there wasn't many options but this really did amazing. I have done Chemo also and it didn't seem to have the same affect most people have from it. I have a support group on face book it is group called Cutaneous T cell lymphoma if you ever need to find people out there with more info.
I have a good friend who has this, I just found one on him that he did not know he had. He is in radiation at this time.
He was diagnosed with psoriasis in the beginning but no one could cure it. He finally was sent to Moffitt Cancer center in Tampa, Fla. He had excellent care. At this time he does have three skin Lesions? they are flat with a white center to them. He has to be in the sun to prevent the lesions.
Would love to talk to anyone with this
That site has been very helpful. The goal of treatment isn’t necessarily to go into remission, but to stop it from progressing. This disease has been misdiagnosed because it is so rare and can look like psoriasis or other skin problems. I was told five years ago by a breast surgeon that it was “nothing” so I ignored it for all that time until the patches started to spread. It sounds like your friend is in the right place if it’s a cancer center. For me, it was hard to trust the doctors at first because up until this they were all wrong! Doing research on the Internet can be scary and misleading because we are not doctors and can misinterpet the information.
In any case, if you need to talk just keep cominig back here.
Thank you for the info Sandy & Nick. Ronnie, the conference was very informative. The doctors answered questions and most of mine were answered. I guess I was disappointed because I didn't want to hear those words, "there is no cure, but..." So, I now have a better understanding of the disease and have to accept that the best I can hope for is to manage it and live as normal a life as I can with it. It wasn't fun listening to the experiences of others who are much worse off. I was surprised to hear that most of them went through many, many PUVA treatments with not much success. Although I'm still depressed about all of this, I am happy that I don't have the severe symptoms that some people have, the unrelenting itching, etc.
Nick, I'm going to check out your facebook support group now. Thanks.
My husband has CTCL. He sees Dr. Zic at Vanderbilt in Nashville. We have been very pleased with his care since switching to Dr. Zic. Targretin has been a life saver for him.
I was diagnosed a couple of months ago after about 2 years of uncertainty.
I only have a couple of patches and the steriod cream seems to work well provided I'm consistently applying it. Being Stage1A, I truly understand how fortunate I am to have been diagnosed within a 2 year time frame of the initial onset, but I do have a question as to how quickly the disease progresses. I've heard Stage 1A can go on for years without change, but I've also heard it can progress quickly regardless whether it was diagnosed early or not. Can anyone comment on their experience from Stage 1A onward. Thank you for sharing.
1800 4 cancer is the best resource, there are speciallt trainned staff to answer all your questions and send or e-mail you info. on all the cancers. Wonderful uptodate site.
Diagnoised Dec. 29, 2011....biopsy of spot on chest...now have rash on truck area, hips, chest, sides of ribs...very light rash and itches some. Also have had very itchy palms for a year before first rash spot appeared on chest. Not getting detailed info. from doctors. Only using cream on spots, but don't see much change. Worried about spread if not treated. So far all blood test have came back normal. I have seen 2 skin care specialists, and a Cancer specialists. All seem like it is ok and that I see them again in a year. One did want to put me on Soratane and light therapy. But I am afraid of Acutane type drugs and the light box was very expensive. Not sure just what to think or expect at this point.
Hi everyone! I am not new to the world of cancer. My seven year old is a leukemia survivor. Cancer free for 16 months. But that's not why I post here.
My father in law has been diagnosed by his general practitioner with Sezary syndrome (after two years of ezhibiting symptoms) however blood tests and biopsies have been inconclusive. He is waiting for their office to recommend an oncologists and get a referral. No one has contacted him in days. So the cancer mom in me has convinced my father in law to move on to the second opinion before we get the first from a local oncologist in Salt Lake City.
So here's my question: where are the experts in this field? Everyone in the childhood cancer community can agree that you can get good care almost anywhere, but there are a couple of hospitals that really stand out: st Jude's and children'S hospital of philedpehia. Who are the experts in SS?
Rascal1- thank you for responding. I did see that you had posted that number above. I called them earlier. They could only tell me the name if the cancer institute closest to my father in law. I am looking for opinions which they would not give.
Hi Joanna,It's tough sometimes getting straight forward answers from these docs.Looks like Sally has the right idea,as I'm not at all versed on this type.Always felt when in question follow your heart and keep searching.The unknown is so scary but I somehow think the toughest people fair the best in our situations.Good luck and stay strong.
