Answers from the Experts: Q&A - May 2024

Do you have questions about cutaneous lymphoma and/or treatments? Our clinical Q&A's are a great way to learn more and empower yourself with knowledge from experts in their field.
Clinical Panel
Mary Jo Lechowicz, MD, Winship Cancer Institute - Emory University
Zachary Wolner, MD Winship Cancer Institute - Emory University
Timestamps
01:46 "Is there any other option besides doing Moga every 14 days for the rest of my life?
Will this flakey rash ever go away ?"
03:12 I am stage 2B. Smear showed leukemic picture with sezary cells. Flow Cytometry came back normal. Being considered for PUVA / methotrexate / spot radiation. Benefits & side effects of each and how to choose?
06:19 Can Sezary syndrome cause memory loss as it progresses?
07:44 How much does stress impact MF?
08:48 Is a Buffy coat smear (Sezary preparation) better than flow cytometry in picking up tumor cells in the blood?
10:22 Do you have any experience with Sunburn/UV issues on the most affected skin areas.
11:40 How often does someone with stage 1A progress to more advanced disease that may become life threatening?
12:47 I was diagnosed with Primary Cutaneous Anaplastic Large Cell Lymphoma in 2018 (one lesion) and again in 2020, same diagnosis, new (lesion). What is the likelihood of a recurrence of the disease now that it is 3+ years since the last event?
13:55 I was diagnosed with MF Stage 1B in April 2022. It is well controlled with NBUVB/Acitretin. I continue to struggle with an itchy scalp. Doctor says that it is dermatitis not MF patches. I have gone through exhaustive patch testing, so contact derm is ruled out. Coal Tar, ketoconazole, and zinc pyrithione have not helped. Fluocinonide solution does offer some relief but it doesn't last. Other suggestions?
16:04 With CRISPR in the news regarding actually editing out a disease from cells, is that a viable area of research for people with t-cell lymphomas?
17:04 I have been treated with UVB therapy with resolution of rash (Stage I A). Is it important to treat recurrent or new skin lesions that remain minimal, i.e. does treatment impact long term survival or have an effect on risk of "transforming" to a more severe stage?
18:16 What new treatments can put CTCL in remission?
21:17 How many positive biopsy results are required to confirm a diagnosis of MF?
23:00 How common is it for people with PCFCL to have systemic involvement? What percentage of patients have eventual other types of lymphoma?
25:03 Is targeted radiation the best approach to a bump that was cut open, cleaned and stitched, and later learned to be PCMZL? There were no clear margins, or they are unknown, and PET scan showed no cancer anywhere at all. Options are to do nothing or accept what seems to be low grade, shallow targeted radiation where the spot was (15 treatments).
29:09 Have you experienced lymphoproliferative disorder in the mouth and how to best diagnose whether LyP or PCALCL?
32:31 For Mycosis Fungoides, what is a good way to resolve itching especially at night?
33:48 Can you talk about lifespan? My husband has Sezary syndrome Stage IV2B, Everything online says 2-4 years but his doctor says decades.
36:55 How frequently does the cost of treatment or therapy become a major consideration in choice of medications and how do you share that with your patients?
40:22 Most recent literature describes "lumps & bumps" where previously I just noted "tumors" as part of symptoms. What changed?
41:39 Should MOGA and ECP (Photopheresis) be used simultaneously?
42:55 With patients being treated with Mogamulizumab, how long have you seen consistent efficacy?
44:32 Does treatment halt progression or just help symptoms?
46:16 I have been doing NBUVB for 3 years and though my MF has improved greatly, still no sign of going into remission. Is this uncommon?
47:34 How effective is surgery to remove a lesion of PCALCL, how deep should they go? Does it remove muscle, or lymph nodes?