Answers from the Experts: Q&A - January 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. (Click "...more" to see Q&A timestamps.)
Clinical Panel
Amrita Goyal-O'Leary, MD, University of Minnesota Medical School
Eric Mou, MD, University of Iowa Hospitals and Clinics
Timestamps
2:24 How should the skin be cared for after each phototherapy treatment within the African American population? What products are best?
3:45 Does Stage 1B MF have good long-term outcomes if rashes are recurrent but controlled by light treatments, sunlight and ointment?
4:23 Should we consider getting second opinions?
6:04 Is there a way to rapidly clear skin of plaques and tumors?
6:44 What are your thoughts about clinical trials?
8:01 Do you know of any connection of cutaneous T-cell lymphoma and lymphedema?
8:45 Is there any way to predict length of remission following treatment with Adcetris?
10:46 What are best practices for using triamcinolone and clobetasol?
11:14 Can phototherapy completely eradicate the CTCL skin lesions? Roughly how long will the skin lesions reappear/recur after phototherapy?
12:20 Does FMF always progress? Is there a progression rate? Is early stage, stable disease possible?
13:23 When symptoms come and go, how do you know if you're getting better or not?
15:43 How much radiation is too much radiation?
16:23 I was diagnosed with MF Stage 1B in April 2022. It is well controlled with NBUVB/Acitretin, yet I keep hearing recurrence is “to be expected”? Why is that? What causes patches to return? As I navigate reducing my treatment over time, how concerned should I be about recurrence? Does recurrence lead to progression?
19:09 What are your thoughts on carmustine cream/ointment?
19:36 Can an individual with Stage IB who has noticed about 30 new small patches this past year, keep practicing active surveillance?
20:34 Is there anything that should be avoided as far as food, sun exposure, activities, certain skin creams?
21:31 Due to onset of neuropathy from Adcetris, besides increasing treatment interval from three to four weeks, what else can I expect?
23:54 Does successful topical treatment for patches/plaques mean that they clear/go away? If treatment for six months hasn't cleared or reduced patches in size is a new treatment plan warranted?
25:01 Is it safe to use melatonin for sleep (less than 1mg)? There are some studies that indicate it can promote cd4 T cell growth.
25:44 Any advice for newly diagnosed mycosis fungoides?
27:25 Can you explain what T-cells with increased CD/4/CD8 ratio detected means?
27:59 Thoughts on tacrolimus for MF patches vs. triamcinolone (steroid).
29:04 Could a tingling/nerve sensation around and near patches be at all associated with CTCL/MF?
29:31 I have mycosis fungoides (most likely). When the rash appears I treat it with application of Triamcinolone 0.1% cream. After 2 weeks of treatment the rash disappears. Is this treatment in fact effective or would the rash disappear on its own?
30:23 When doing phototherapy should the whole body be treated or just those areas affected?
30:54 I have PCMZL. When would I need systemic treatment?
32:43 Have you had success treating with chlorambucil tablets?
33:59 I have had stage IA MF for approximately 27 years but recently gone into stage IB with patches appearing on limbs, neck and armpits. I am 74 years old, should I start treatment since the cancer is incurable and will come back?
34:50 For someone living a normal life with early stage MF, should I be on the lookout for anything special? More aggressive / frequent screenings or should I watch out for other things?
35:57 What is the impact of CTCL on pregnancy and the fetus?
38:15 How does CTCL in early stages affect response to COVID. What steps should be taken to lower risk?
39:57 Recommendations on how to deal with side effects of Adcetris?
41:59 What are your experiences treating patients with MF with fluocininide?
43:43 What is the doctor looking for when doing a PET scan for newly diagnosed MF?
45:14 What is a good cd4 to cd8 ratio?
46:30 Can going to the light box once a week be helpful in treating CTCL?
47:12 Why am I healthy if I have a compromised immune system from MF?
49:37 Is there a possible relationship between having two rare diseases--MF and CIDP?
50:45 Can stage 1A MF cause fatigue, exhaustion, or overall weaken the immune system?
52:01 In your opinion, is Bexarotene the best treatment option?
53:19 I have follicle center CBCL with several small recurrences treated with Clobetasol or intralesional Kenalog with good response. What can I expect over the next 20 years? Will small recurrences continue or stop? Systemic disease?