I was diagnosed with MM on Aug 22, 2018 on the morning of my 61st birthday. I was shocked because I didn’t feel sick. I had a back ache that just wouldn’t go away. It was my kidney in stage 4 failure. I was on the top of my career and felt I could overcome this and return to work. I started treatment immediately and was doing well when my colon burst. They couldn’t treat me because of the chemo so I was in the hospital being treated with antibiotics until my condition enabled me to have surgery to remove 12” of colon and repair my intestinal track. I returned to chemo shortly after and was preparing for my stem cell transplant. In March of 2019 I had the transplant, unfortunately it only lasted for 8 months. Back to the infusion lab and start of a new treatment. Fast forward to today, I’m retired and doing very well. We bought a motor home and enjoy traveling throughout the country. I’m doing so well I can take chemo holidays to travel. I spend my time now doing a prison ministry, visiting nursing facilities and playing with grand kids. I go for monthly chemo (Dara) and take palmalyst 21 days followed each infusion. I take many vitamins and have a diet that keeps me going. My life today is good and I m not limited in what I can and want to do. My wife has been the best caregiver I could have ever wished for. She does all the research and keeps my Doctor informed. Life is short in the big picture and I have dedicated my life to service.

Considering stopping Revlimid because I have been in remission 3 years with an m spike that dropped to zero three years ago. I want to end the side effects from Revlimid and steroids. Has anyone else done this? My Dr is in agreement and will monitor if the MM returns

PAID Patient research for recent CAR T experience - $200 incentive To qualify you or your loved one: 1) must live in the US; 2) have Multiple Myeloma 3) must have CAR T experience in the last 2 years (or so). This research is easy to participate in: It's one 60 minute confidential and anonymous call with one moderator asking about your experience. If you do the call, FACP will pay you $200 via venmo, paypal, zelle or mailed check. Find a Cure Panel specializes in patient research for rare and serious diseases and has some new patient research for those with recent CAR T experience for MM. If you're interested in participating, please text FACP at 323 717 8117 or email info@findacurepanel.com -reference FACP/MM CAR T - you can also write me a private message if you have questions. please pass along to CAR T patients. See less

PAID Patient research for recent CAR T experience - $200 incentive To qualify you or your loved one: 1) must live in the US; 2) have Multiple Myeloma 3) must have CAR T experience in the last 2 years (or so). This research is easy to participate in: It's one 60 minute confidential and anonymous call with one moderator asking about your experience. If you do the call, FACP will pay you $200 via venmo, paypal, zelle or mailed check. Find a Cure Panel specializes in patient research for rare and serious diseases and has some new patient research for those with recent CAR T experience for MM. If you're interested in participating, please text FACP at 323 717 8117 or email info@findacurepanel.com -reference FACP/MM CAR T - you can also write me a private message if you have questions. please pass along to CAR T patients. See less

Hi all, I am experiencing nails peeling as well as shedding lot of hair after my CAR-T. I think the 3 days chemo (lymphodepleting chemo) might be the culprit. If anyone experienced same/similar side effects, please let me know what you have done to stop the hair loss and nail changes. Thank you

📢 Reminder! 💰 TOMORROW Join us for a powerful webinar exploring financial support programs for blood cancer caregivers and Veterans.👥 Learn about underused VA benefits, caregiver-specific assistance, and key resources to help you or your loved ones thrive. 🗓️ Don’t miss out—this info could make a real difference! Register now: https://healthtree.org/myeloma/community/events/may2025-financial-blood-cancer-caregivers-veterans?utm_source=social_media&utm_medium=facebook&utm_campaign=EVENT&utm_content=general

This is off topic, but thought I would explain where my name came from, Pheba. Pheba is the result of cancer in a way. My given name is Sharon. Back in 2004 I was diagnosed with Endometrial cancer, had a complete hysterectomy. I went to a genetic counselor at our local cancer hospital. Back in 2004 genetic testing was mostly not covered by insurance. The counselor suggested I do a four generation genealogy study to see what I could learn on what diseases my ancestors had. I went back 8 generations on my direct maternal line,. Paternal line was more difficult. My 4th grandmother was named Pheba. My 8th grandmother was named Pheba. Her husband, Alexander fought in the battle of King's Mountain during the revolutionary war. There is a notation in a history book stating that Alexander went Elk hunting with the general in charge of the battle. I find it fascinating that northwest Tennessee once had Elk. Pheba had 11 children. She died. Alexander remarried and had 10 more children. On my paternal side of my maternal line , my 8th grandfather, a barrel maker, had 21 children. I probably have a lot of genetic cousins.

Stem cell, Auto. May 2024. Presently on Darzalex FasPro and 10mg. Revlimid three weeks on, one off. Came down with a bad head cold on Saturday, last. I ate out with a girlfriend. First time in public without wearing a face mask. The restaurant was packed with people. Wearing a face mask does make a huge difference. Although I could not wear a face mask while eating my meal, so there you go. I took Tylenol last night for fever 101.6. No fever this morning. Resting pulse is 54, and I am literally freezing. I took a Covid test. It was negative. Should I take another? This feels and acts like a nasty rhinovirus. I just finished 6 months of IVIG transfusions to build up my immune system. Wondering if this virus is going to be a test on how well my immune system is working. If the symptoms are a judge then my immune system is very angry at this invasion and is responding as it should. I have less than 5 IGA, my IGG is 750, and the last number is very low. (IGM) The doctors tell me that you can get by with just IGG, although seasonal allergies are the worst this year. (IGA controls sinuses) But, everyone I talk to is saying the same thing. Has anyone else had a head cold while on chemo?

Hello, For those of you who have taken Venetoclax as maintenance therapy for Multiple Myeloma, did you ever relapse while on venetoclax, or did you ever have to switch from venetoclax to something else after being on it for a long time? Thanks

I've become interested in red light therapy and purchased a device that dispenses red and near-infrared light to promote healing. My MM has been quiet since my ASCT in 2021, thankfully! I'm 65, not taking any maintenance drugs. But I also have near-constant nerve pain and discomfort in both legs and feet from previous nerve damage, and also severe joint pain in both knees, hip and ankle, hence my search for treatments that might provide some relief. (I also receive acupuncture regularly). I've seen suggestions online that since red and NIR light increases energy uptake in cells and promotes cell growth (and healing), it could hurt me if it promotes the growth of malignant plasma cells in my bone marrow -- the last thing I would want. Does anyone know anything about this? I'm refraining from using the device until I get more information.

Hello I am Interested in anyone that has had treatment-Bispecific and how the side effects were. My doctor just suggested this treatment option.

For those of you on Social Security SSI, SSDI or retirement, you eed to be aware of an emergency notice that the Social Security Announced. Effective immediately, all overpayments made in error either by the administration or by recipient incorrect reporting will now have to be paid back immediately, not over a period of time, However, for those listed above it will be a clawback of 50%.

I am a 67 year old woman recently diagnosed with MM. My oncologist also strongly suspects I have cardiac AL Amyloidosis. Both the bone marrow biopsy and the fat pad biopsy were negative for amyloid, but now he has scheduled a 90 minute cardiac MRI and if that is inconclusive, he wants a cardiac biopsy. Are false negatives common with amyloidosis? Has anyone else been put through this? With two negative tests already, I question the need for further testing. Thanks.

My doctor passed away.