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.

If you are on maintenance, how often do you get a PET scan and a Bone Marrow biopsy?