Good article in MedPage Today for newly diagnosed MM patients. I tried to copy to copy link... not sure it'll work. If not, go to: Medpagetoday.com and search for Multiple Myeloma. https://www.medpagetoday.com/medical-journeys/multiple-myeloma/116615?xid=nl_mpt_DHE_2025-07-24&mh=7cb5582060fac0f46b63891780ce4522&zdee=gAAAAABni7E3VJ_LzBSeg33XHY4aZiRDJhnJKKmj9y2twwxE9meh7UaJ1W4uRJoOzotRNN5pgyI5GZmXLK2y0QlFSXz_y4M7eRERagx-WoW8NFa7jdyFFuo%3D&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%20-%20Randomized%202025-07-24&utm_term=NL_Daily_DHE_dual-gmail-definition

After diagnosis 4/9/21 at 75, I started on Dara/Rev/Dex. My M-spike, light chains and all other lab values gradually shifted into the normal ranges. In May of 2023, with my M-spike at zero, we decided to stop the Rev, Dex and daily aspirin (continuing the monthly Darzalex Faspro injections). Since that time my M-Spike has slowly increased to .37 as of 1/17/2025 (light chains in normal range). My oncologist has suggested going back on Rev or maybe Pomalyst, (we’re waiting a couple of months to see what happens). **Update 07/24/2025** My M-Spike is gradually rising now up to .53. We have decided to add Pomalyst 21/7 and Dexamethasone once a week. I hate to do it, but the idea is to catch it before it runs away. Back to the brain fog, constipation, fatigue and bruising, oh well it is what it is, have to deal with it. I was on Revlimid originally, does anybody know if there are differences in side effects with the Pomalyst.

Diagnosed in March 2024, I started with four cycles of induction therapy and monthly injections of Zometa for bones. Now that I’m on Dara and Revlimid maintenance, I’m getting monthly injections of Xgeva. Ever since my SCT on Dec. 30, 2024 I’ve had tooth sensitivity, and I’m getting concerned that the bone strengthener medicines are affecting my jaw. The last thing I want is jaw necrosis and losing teeth. If you’ve experienced jaw problems, did the sensitivity subside after a while, or did you just have to stop the bisphosphonates? I don’t want to change the treatment plan after it’s too late.

I’m 75 and I’m 110 days post CAR -T as of this post. Just last week, I had a telemedicine visit with my Stanford doc and she went over my latest bone marrow biopsy results. They did a deep deep deep scan of several million cells and found ZERO myeloma cells, ZERO bad M protein, and low light chain numbers well BELOW normal range. They say I have a “COMPLETE RESPONSE” to my treatment. Stanford docs feel it will years with no myeloma and no maintenance drugs. I just need monthly visits, for now, with my local doc. They use remission for curable cancers; semantics🤔. Early on I did the DRVD chemotherapy. The Darzalex gave me severe breathing problems; the local doc and Stanford doc had never seen this before and stopped the drug. Velcade gave me a full body rash and they stopped the drug. Dex gave me sleepless nights for 2 days. Revlimid I tolerated and eventually remission for a year with Revlimid as my maintenance drug. I relapsed the beginning of this year. They referred me to a CAR-T doc at Stanford to start the process. In February they harvested my T cells and sent them to a lab to be genetically modified to fight myeloma cells. Once the cells were ready I went to Stanford to start the 40 day process. They have a rigid protocol they follow. There is pre work ahead of getting the cells. Daily visits for blood work etc. The modified cells were put back in on April 3rd for an SEEK and DESTROY mission. After 5 days there is a mandatory hospital stay for 7 days; that’s when side effects happen. They want you close to treat them quickly and mine were minimal. Just before I was released they did a bone marrow biopsy (OUCH!) and that showed ZERO myeloma cells👏👏. On a side note; I was a research “lab rat” for the drug company. When I getting blood drawn for them as well as Stanford, sometimes they drew 17 vials of blood. I was happy I had a PICC line. The drug company paid or ALL of our expenses for the 40 day stay. Our room was a suite😄. After my experience I feel CAR-T is the way to attack MM. Good luck with you MULTIPLE MYELOMA JOURNEY.

Fund open: https://www.cancercare.org/co_payment_fundings/multiple-myeloma $7000 for Medicare, Medicaid or Tricare. Income limits as well.

If you missed our recent webinar with Qun-Bin, where he shared the benefits of Taichi and Qigong and guided us through a practice, here’s another chance to experience it. I hope you enjoy! https://healthtree.org/myeloma/community/events/jul25-taichi-qigong-myeloma-wellness?utm_source=intercom&utm_medium=email&utm_campaign=followuprecording&utm_content=general

My husband is a newly diagnosed MM patient in March/2025. He was put on CYBOR D therapy.. A few weeks into the infusion therapy his left leg lost all mobility and is extremely weak. It it not due to any bone issue. It seems to be severe peripheral neuropathy due to the chemo treatments. He was perfectly healthy and active (youngish mid 50's) when this happened. Now he is using a walker and cannot walk on his own. His chemo treatments have been finished for 2 weeks now and he has not noticed an improvement. Has anyone experienced this? Does mobility eventually return?

Hello, my name is Joann. was diagnosed with high risk myeloma in may 2025. I have Iga kappa light chain. I was diagnosed through bloodwork at my annual physical. I have always been very healthy, active and fit until now. I do have 4 lesions, but have not ever had bone pain or fractures. I also have 2 genetic mutations that are pretty serious. no organ damage. My LDH started in normal range and remains there. All bloodwork are pretty much in range. At least for now. I have a hematologist and an mm specialist. I just completed my first cycle of immunotherapy. ( velcade, Daratumumab, Dex, revlimad. 3 more to go. All my test since after completing my first cycle have been excellent. My anemia is almost non existent and my m spike began at 3.6 when first diagnosed and is now <0.2. My immunoglobulin A went from 5, 903 to 277. My kappa free Light chain has gone down dramatically as well. 2.14 to 1.06 in range After the diagnosis, I was completely distraught as I believe so many people are. But I have since then, accepted my diagnosis and trying to be more positive. I worry more about choices I will have to make after my 4 cycles. Doctors are adamant about getting a stem cell transplant. I am so scared of that procedure. Recovery seems awful and such a long stay at the hospital. I have inquired about C Cart instead, If I go into remission and then proceed to relapse. But they still want me to get the stem cell transplant first. I live in Ct. And going to Yale smilow cancer center. I do think I should at the very least freeze my stem cells as a just in case. The stress of me having to make that kind of decision is so overwhelming. I know I have time to decide but I can’t even enjoy any progress I have make during treatment. It keeps me up at night. I am really struggling to say the least. I think I’m just looking for anyone who has been in a similar situation as me that could shed some light. Thank you to anyone who has read my post. Best wishes to all for a healthy happy life.

Please share your experience if you have decided to stop all treatment after being MRD negative and having no M Spike . . (I was originally diagnosed with MM in August 2019) My experience was After one year of perfect labs , no mSpike , excellent kappa lambda ratios and 2 consecutive MRD negative results (4 months apart ), I decided to stop my pomalyst and Daratumabab treatment (which I had been on for two years ). Side effects were fatigue, occasional dry cough and feeling not 100% after the subcutaneous shot. I felt my body needed a break . Of course , I’m continuing monitoring my labs and will check my MRD results every few months.

Hi dear fellow, can you tell me how can I increase my white blood cells and my immune system thank you 🙏🙏🙏🙏

My recommendations would be to never do chemotherapy and limit radiation have whole foods and avoid surgery unless it is completely necessary such as a life or death situation. Build up your immune system and don't destroy it.

I'm a Brazilian male 56 yo. I was diagnostic with mm a 18 months ago , my hematologist in Brasil told me I will survive for 2 or 3 years . I never lost my faith in God and I decided to fight doesn't matter what it rakes I start a quimioterapy at University of Miami and never have any side effect , after 6 months I was invited for a trail with a new medicine , Linvoseltamab , and I'm been in remission since January of 2025 . I did another bone marrow biopsy last week and came with deep zero for cancer cells, and my pet scan shows no lesion on my bones. I'm so happy to share my experience with the doctors at UM and I'm hoping this medicine will be the begging of a cure for MM. Thank you.

Hello Fellow Warriors I have IGA Lamda Mutiple Myeloma High RIsk. I have been doing immunotherapy for 6 months now. About 3 months ago I requested the dosage of my dex be lowered from 40 to 20mg. Since then my M protein has gone up. I was at .3 then the following month it went to .4 and then this month it is still at .4 Could this be due to the reduction of the dex? I really dont want to go back to the higher dose but if it is whats causing my numbers not to drop anymore then maybe I should...

This co-pay fund at LLS is now open: https://www.lls.org/support-resources/financial-support/co-pay-assistance-program

Hi! Interested to hear the experiences of those who have started HRT after SCT. I was diagnosed at 28 (33 now) and have been managing the effects of menopause since my transplant in 2021. There’s been hesitancy from my doctors in the past as I take Revlimid for maintenance (5mg) and they don’t have a lot of data for people my age. I take baby Asprin in conjunction with the Revlimid. It’s hard to differentiate between menopause and chemo symptoms sometimes, but I have a psychiatrist wondering if it would help with my anxiety, energy levels, etc. Thanks in advance!

Is anyone in this group participating in LLS's Scenic Shore 150 bike ride this weekend in Wisconsin? Looks like we might have a little rain on Saturday but it'll be plenty warm both days. I'd love to meet up with any fellow Myeloma survivors doing the ride.

Hello, I am 5 years post SCT with Kappa Myeloma. Recent pet scan indicates a spot on my Tibia so maintenance plan has changed. On pomelyst, kyprolis, dexamethazone. 3 weeks on, 1 off. I’m finding I’m highly sensitive to dex. 20 mg. I wanted to ask my oncologist could we reduce that dose even more but I don’t want it to impede my treatment. Was just wondering if others have experience a high sensitivity to it as well. I work full-time and try to time it so I have the weekend to recover, but it takes about three full days to feel back to normal.