2024 2-Day Patient Conference - Clinical Q&A Panel

The open Q&A with clinicians is always a popular conference session. We were pleased to have the following clinicians on our panel to respond to the questions from our attendees, both in person and online:
Niloufer Khan, MD, MSCE, City of Hope - Comprehensive Cancer Center
Kevin Molloy, MB Bch BAO MRCPI PhD, Tallaght University Hospital (Dublin, Ireland)

Timestamps:
00:52 I was just recently diagnosed with MF (mycosis fungoides), no Sezary, in stage 1A to 1B. For phototherapy, UVB narrow band, can you use the booth for the hard to reach groin area without a sock?
02:54 Is there a home phototherapy unit that's user friendly for localized areas including private parts?
05:07 Could a treatment change based on a patient reported quality of life priorities or is the focus now more general, as in do you feel better or do you feel worse compared to the last visit?
08:54 What is the treatment that can cause tingling in the hands and feet? (follow-up to response given to previous question)
09:20 What is the difference between "lab work" and "flow cytometry"?
10:57 On my most recent visit to my CTCL specialist they mentioned that the presentation I had may not be CTCL but rather lymphomatoid papulosis (LyP). Can you explain what that is and I should worry?
13:38 Just to clarify (response to above question), the biopsy and the MF doctor said that under the microscope, looking at (the biopsy) would be the same regardless of whether it was CTCL or lymphomatoid papulosis, is that true?
14:38 Can someone have LyP and MF both at the same time?
16:07 Are there any emerging or new technologies or therapeutics that you are finding exciting?
18:03 Is a glass of wine a day okay with MF early stage?
18:28 Is there a limitation on how much UVB a patient can receive over their lifetime?
21:37 Could you speak a bit about cutaneous Gamma Delta T-cell lymphoma?
22:34 I was diagnosed with a marginal zone lymphoma in 2009. I was told it is slow growth, indolent, and stays forever. The last time I attended a conference like this they said it can be transferred to your legs which is the more aggressive type. Did I hear it right or wrong?
24:29 Follow up to above, how does a patient know that there might be a transition? Is there a screening that can be done in order to find out or rule out such a thing happening?
25:31 Follow up to above, are there blotches or spots on the legs that might show a change or a transition?
26:59 Do you believe that younger patients often initially present and remain at an early stage of the disease for decades due to their immune system quickly identifying and containing the harmful T-cells or is is it more of a characteristic of the nature of MF?
28:28 What does a biopsy showing large cell transformation indicate?
29:35 Can initiating treatment early alter the trajectory of the disease or is the course already predetermined regardless of the early treatment someone receives?
33:11 Regarding stem cell transplant - why is the best match same gender? And also, with women why have we heard that its not such a good idea to have donor who has had children?
35:31 Is there such a specialist as a dermatologist plus hematologist/oncologist?
39:05 Is there an average length of time that mogamulizumab will work as treatment if a patient is developing a few new lesions while on this treatment? Does that indicate that perhaps the treatment is not working as well?
40:42 When should I consider bone marrow transplant?
42:41 Can stiffness in the ankle and wrist joints, hands and feet be a side effect of medicines or the disease itself?
45:11 How can we keep our immune system healthy? It seems like there's different information from different sources and they're very conflicting.
48:17 In terms of being healthy, what is is a healthy diet?
52:16 Do we know what brings people out of remission? Secondly, if you're a Stage 4 and you come out of remission, could be a Stage 1 or are you at Stage 4?
56:44 If you have a tumor and you're treated for that and it goes away or reduces, does that mean for all intents and purposes that's "cured" for that time or is it just in remission?
58:07 Are there any valid mortality tables at this point in time for CTCL?
1:00:05 Is there an improved treatment than the rituximab I was originally prescribed in 2009?
1:01:35 I have had MF for many years but restricted to the skin four years ago. My lymph nodes became involved. I have since tried various chemo combinations with a durable response. Is any point in getting a new biopsy of the lymph nodes to see if the gene expression has changed?
1:05:14 Is there any research on pregnancy with MF, specifically FMF? Can hormonal changes of pregnancy cause the MF to take a more aggressive turn?
1:09:02 Are there types of CTCL most suited to stem cell therapy?
1:12:54 In your experience, have you observed that feeling colder than usual is a potential side effect of having MF?
1:13:33 Do you recommend taking mineral selenium as a supplement?