Revlimid Diarrhea and Gastritis: What has helped me April 2025 update after one year off treatment and still MRD negative. This is focused on my myeloma adventure but may be useful to other hematology patients. Always check with your healthcare team before making any changes. . Colestipol can free you from being near the bathroom all the time. I am currently off it. Dr. Paul Richardson, 2016: “Lenalidomide [Revlimid] related diarrhea is I think probably an under-appreciated problem. The good news is that it’s very manageable. It typically occurs when lenalidomide is used in maintenance without steroids, and it can definitely become a problem over time. The good news is it’s a sign that the lenalidomide or Revlimid is probably doing its job because it’s basically working on the immune system and stimulating not only immune system throughout the body to fight myeloma, but it seems it may be also stimulating the immune system in the gut.” https://www.lls.org/sites/default/files/National/USA/Pdf/Slides_Transcipts/transcript_myeloma_1.6.17.pdf . Does IBS develop during immunotherapies? Low FODMAP is important but many gastros don’t know about it even though the American College of Gastroenterology recommends it. Foods and quantities can be tricky, most info on the internet is wrong. Get the app from https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/ . More fiber. Anthony’s organic whole psyllium husk: https://a.co/d/5XWv5ep Note Metamucil has either high sugar or artificial sweetener banned in Europe. Suggested by a social worker in a support group. I think this alone helped me to taper off Colestipol. . Probiotic each day. Quality is extremely variable, check reviews like this: https://www.reviewscout.org/top-5-probiotics/ I am trying StoneHenge because it is US made, in glass bottles, etc. . Amitriptyline for “functional dyspepsia”, suggested by PCP. Slows down the whole gut system a bit. “Titrated low-dose [10 mg to 30 mg once daily] amitriptyline was superior to placebo as a second-line treatment for IBS in primary care across multiple outcomes, and was safe and well tolerated.” https://www.sciencedirect.com/science/article/pii/S0140673623015234 . I have been able to gradually taper off Gaviscon Double-Acting (Alginate antacid imported from England with high price), then licorice DGL. DGL is better than taking antacids: https://a.co/d/7d43tD5 . When my stomach is uncomfortable I eat a tiny bit of pure, high quality Stevia powder which makes me salivate: https://a.co/d/1PomcT6 This is surprisingly effective at least for me. . One key has been taking a PPI for a few weeks to allow recovery when needed: Pantoprazole 40 mg (Protonix). My PCP suggests that this is worth the problems PPIs cause as long as I take B-12 sublingual (for absorption) and calcium citrate that absorbs without stomach acid. I am currently off Pantoprazole. . I have started taking Glutamine powder under the guidance of a Naturopathic Doctor (ND) who specializes in oncology. It may be helping me to stay off both Colestipol and Pantoprazole. . Exercise every day (as possible). Wear a sports watch and elevate your heart rate. Move to live. . MIND diet or similar. The gut is most of the immune system. Reduce inflammation which drives many problems. If nothing else, reduce refined sugar to reduce inflammation. Anticancer book by David Servan-Schreiber is still essential reading: https://a.co/d/7i8l8Ar . Stress damages the immune system. Laugh a lot. Watch comedians on YouTube or whatever. . Meditate even for a few minutes a day. I use the Muse EEG headband for neurofeedback meditation (and to measure my sleep quality occasionally). I have been doing mindfulness meditation since 2008 and neurofeedback drives me way deeper. The research is credible: https://choosemuse.com/pages/muse-research . Sleep is a large part of the immune system. I use the OmniPEMF system to stimulate my vagus nerve in the afternoon and then push me into deeper sleep at night. My Muse EEG shows big gains in deep sleep time since I started using Omni. And I have stayed in remission (MRD negative) during that time. Coincidence? Maybe. Deeper and longer deep sleep is essential for the immune system. The research is credible: https://www.tandfonline.com/doi/full/10.1080/15368378.2025.2462649 . Hypnotherapy is misunderstood. It is simply helping you settle into a state of deep relaxation and then suggesting things to help with whatever is challenging you; “John, you are going to sleep well”, “You will be very relaxed”, “You will let that topic go”. “Sleep now” - I can’t say those two words now without yawning. I did not expect much and have been surprised how effective it is. https://www.apa.org/monitor/2024/04/science-of-hypnosis . Find a support group that you can share experiences, ideas, and techniques with. Teams help to overcome challenges. . Share what works for you In Part 2, I will report results from working with a Naturopathic Doctor (ND) who specializes in oncology.

Has anyone used Darzalex? I had SCT in May 2021 and had used Pomalyst 1 mg up to Oct 2024 due to low blood count i switched to Ninlaro 2.3 mg in Nov 2024, my neuropathy had gotten worst on both fingers and feet after the 3rd cycle my right eyes got swollen for week and red spots on my upper torso chest and back. I took steroid to relieve the problem just to have the same side effect after the 4th cycle so my Oncologist will have me switch to Darzalex, i would appreciate if anyone had used it and what were the side effect? Thank you

Has anyone on this forum had Budd-Chiari Syndrome in the past and had an allogenic stem cell transplant?

Morning , hope all is well. I am new to this group. My name is Sal and I am 60 years old. I have had PV (for 8 years) that became Myelofibrosis stage 2 one year ago. My was spleen was 2600cc (very large) and now have got it down to 1300cc. I am on Ruxolitinib and a study pill (INCB057643). My doctors now want me to do a Stem Cell Transplant in July 2025. I am up and down what to do. I am in good shape but nervous that I won’t recover from the SCT. Anyone have any advice that can help me decide what to do in the future. It would be very appreciated. Thank You So Much and Have A Great Day.

Has anyone else had a 20Q deletion show up during maintenance treatment? All my prior cytogenetic test results have been normal through almost 3.5 years of maintenance treatment post ASCT. I don't know what to make of this new anomaly and would appreciate any wisdom from others who have had this occur.

Here's my suggestion for drug research. The current approach is to design drugs that recognize specific markers (antigens in the form of proteins) on the surface of cancer cells, then kill the cells. The problem is that these markers are also on normal cells, and normal cells are also killed. This is what causes side effects, even death. Thus, a better approach would be to either 1) find a marker that occurs 100% on the cancer cells but not on normal cells - which hasn't been done yet - or, 2) design a drug (and/or its method of delivery) that will identify the presence of an entire CLONE of cells - even multiple clones - then proceed to kill ALL members of the clone and NOT kill any normal cell. Clonal cells have identical DNA, and I believe only cancer cells are clonal (with possibly more than one clone) and that normal cells cannot be clonal cells. I may be wrong, but If I'm right, such a drug may be a cure, without side effects. It must be able to determine the fact that there's a clone of many - thousands or millions - of the same clone. Right now, only a single cancer cell is targeted. The idea is to make the drug aware that there are either one, two, or thousands of clonal cells. It enables the drug to say, "Aha, there are more than one of these genetically identical cells, therefore it's a cancer. Now attack all of them."

Hi Everyone, I had been getting nocturnal night cramps that interferes with my sleep. I’m on quad therapy DRVD. Revlimid seems to be culprit. My magnesium levels are low so they gave me a drip last 2 weeks 2000 mg and 4000 mg. Anyone else have this and how did you improve the magnesium levels? Thank you!

Was anyone on here a part of the Aquila trial for Smoldering Multiple Myeloma? I have some questions about the Dara and overall treatment & outcome . Want to hear from people who actually went through it if possible

Join us for the Tampa Myeloma Roundtable! 🎗️ 📅 April 26, 2025 | 📍 Hotel Alba Tampa | ⏰ 8 AM - 2:30 PM EST Hear from top myeloma researchers, join breakout sessions, and get your questions answered in interactive Q&As. Don’t miss this chance to learn and connect! 🔗 Learn more here: https://healthtree.org/myeloma/community/events/tampa-myeloma-roundtable-2025utm_source=social+media&utm_medium=meta&utm_campaign=RTtampa2025&utm_content=general

I received a stem cell transplant on July 9, 2024 at Northwell Hospital in Manhasset NY using my own blood. Prior to that I was on 25 mg of Revlimid. I’ve been on 5 mg for maintenance since then plus Darzalex Faspro. Because it’s very difficult to digest just about all food, I feel like I’m not improving. I thought digestion would return to normal after Chemotherapy in 2024 but it hasn’t.

A story with a happy ending…there is light at the end of the tunnel. I am 5 Months past my Stem Cell transplant, and feeling great…I would say back to normal. I head out soon for a 4 day golf outing in Florida with my grade school friends, no worries! I am on 5mg of Revlimid for maintenance, and it seems fine. I started feeling almost back to normal after about 90 days. I tolerated the induction, harvesting and transplant pretty well, but the 17 nights in the James had me ready to get back home ASAP. Everything went according to plan! I did my transplant and initial recovery at the James, and they were perfect. I have had two colds, with coughing that each lasted two weeks…but my white blood cells fought it off slowly but surely. I have had my first round of vaccines, no problems. I know it is a long process but hang in there, I believe relief is on its way. My MM was caught early from bloodwork during a routine physical. I was asymptomatic, but had 70% MM revealed from a one marrow biopsy.