Clinical Q&A - Virtual Patient Educational Forum 2024

Expert clinicians respond to questions about cutaneous lymphoma and its treatment. (Click "...more" to see Q&A timestamps.)
Francine Foss, MD, Yale University School of Medicine
Michael Girardi, MD, Yale University School of Medicine
Tarsheen Sethi, MD, MSCI, Yale University School of Medicine
Timstamp
0:45 What tests do I need to undergo to determine if I've progressed or developed another form of CTCL?
2:16 Does stem cell therapy work best for large cell transformation MF disease?
3:35 How is remission determined with the skin in MF? Will our skin ever be clear or will it turn from red to brown?
5:37 I have recently advanced to B1. What are the available types of treatment and long term prognosis.
7:09 Is the incidence of cutaneous lymphomas increasing or is early diagnosis just getting better?
8:41 Can you please speak more about clinical trials with ECP?
9:36 I have advanced stage cd4+ Folliculotropic, LCT, CD30+ and have had multiple systemic and topical treatments, I’m now receiving brentuximab vedotin on my second infusion and it appears effective so far. Is this treatment something that can be tapered to a maintenance dose or is it just continued until progression or your body can't handle it?
12:18 I was treated with brentuximab vedotin and now have neuropathy in my feet and calves. Severe sensory and moderate motor. It has been five and 1/2 months since treatment was terminated. What is the probability that it may still resolve, or am I now stuck with this side effect?
13:34 How does one distinguish between plaques and hives?
15:00 Is there a timeline for mining the data for allogeneic stem cell transplant?
16:34 For Sezary Syndrome (erythroderma + blood involvement), with so many treatment options how does a doctor determine whether to treat a patient with a single treatment option or a combination of treatments?
21:07 What treatments have proven most effective for skin itching?
24:01 Are there any significant differences between the various places that offer bone marrow transplant for advanced, aggressive MF?
26:03 Can a woman with the diagnosis of MF still be receiving Hormonal Replacement Therapy to manage symptoms of menopause?
27:07 I am looking for natural treatments I can do myself. What do I need to stay away from. Foods, chemicals, that are good or bad. Does stress have an affect?
29:11 For patients who have maintained early stage disease for long periods of times, have you found any connections between treatment strategies or lifestyle factors that you would advise us to follow?
30:59 Are stem cell transplants generally these days being more sourced from blood rather than bone marrow, or just for CTCL patients?
32:09 Looking for stage 1 care and support details, what kind of specialists do we need to care for MF.
33:56 Is Extracorporeal Photopheresis effective for stage 2B?
36:10 I have B2 SS and am being treated with Bexarotene, Interferon and phototherapy. I hear about ECP and Mogamulizumab and wonder if I'm getting the best standard of care available. How do I know? Also I've been told Bexarotene may take up to 9 months to work. Is this the case in your experience?
39:39 I underwent 16 rounds of brentuximab vedotin from 2021 to 2022, but is now back with full body plaques and red hive like rash spots. What treatment may be most effective at this point in my battle. Had 6 rounds of brentuximab too in 2018, and did TSEBT in 2019
42:47 Will phototherapy also be something we need as a forever treatment like Targretin, or is that something we can wean off of?
45:22 For Sezary Syndrome, is Mogamulizumab best by itself as an individual treatment, or is it better as a combination treatment concurrently with say ECP (photopheresis)?
46:46 I'm getting phototherapy. When can I use nonsteroidal anti-inflammatory drugs?
48:19 I’m a male doing phototherapy with an athletic support. I am having some itching and redness in my groin area. Is it safe to do phototherapy without anything on to treat my groin area?
51:18 Can mycosis fungoides become Sezary syndrome if it progresses and what distinguishes the two?
52:34 What is the most important thing to review for a Sezary Syndrome patient when we look at our flow cytometry report? Should I be looking for any specific CD+ or CD- markers?
56:50 I was told in 2021 that Merck Interferon ALFA-2B was being discontinued globally and my very effective treatment abruptly stopped I am hearing about interferon tonight. What forms of Interferon are currently available?