My Myeloma worksheet after 6 yrs on the journey... The main thing is, don't die from preventable causes. More myeloma patients die from infections than from myeloma (can't find the reference). Dr. Siddhartha Ganguly: "Myeloma is a cancer of the immune system” Avoid dying of COVID. “The COVID-19 mortality rate in these (CAR-T) patients was about 34%, he said. That’s comparable to the COVID-19 mortality rate in patients with hematologic malignancies undergoing other cancer treatments. For comparison, the COVID-19 mortality rate in the general U.S. population is 1.8%, Dr. Baird said.” https://www.patientpower.info/navigating-cancer/why-car-t-can-make-infections-more-serious One in three, 17X the general population. Put this on your wall as a reminder. Avoid getting even "mild" COVID because evidence is trickling in that it damages the immune system, specifically two types of T cells. https://www.dailykos.com/stories/2023/12/25/2213619/-Covid-is-not-done-with-us-It-s-just-getting-started-We-really-should-be-paying-attention Most patients are not aware of this and nobody wants to talk about it, including most hematologists. Hemos are focused on myeloma and have limited understanding of the territory around the disease. You really have to watch out for yourself and do your own reading of authoritative sources like those above. Myeloma science moves fast. If at all possible, go to a national center to get the latest treatments. I have been in remission for 6 years post-transplant. I got all the re-vaccinations, and I'm up to 9 covid vaccinations. mRNA vaccines might have long term issues, but better than being dead. Everything has risks, you have to balance them. Vaccines are essential, but may only be 50% effective compared to other people. That's why masking and other layers of protection are needed. https://www.myelomacrowd.org/more-data-on-myeloma-patient-responses-to-covid-vaccines-1/ Shingles is beyond awful. Get Shingrix on schedule and take Acyclovir (Dr. Derman, University of Chicago) If diarrhea persists on Revlimid, this is typically bile salt disruption. Try Colestipol (Dr. Paul Richardson, 2016). Also try a "Low FODMAP" diet. Many hemos and gastros don't know about these things, even though they are game changers and widely documented. Get the Low FODMAP app directly from Monash University because most of the info on the web is wrong. Portion sizes are key. https://www.monashfodmap.com/ For chemo brain and fatigue, consider Provigil or Armodafinil. The research on cancer patients is very mixed but Provigil has been life-changing for me. Again, few hemos know anything about this. https://healthtree.org/myeloma/connect/view-post/6SuGEaV6wxCNufCIbRif Watch your labs to assess your immune system status, such as IgG and IgM. When your immune system is down, raise your shields up. More masking, more avoidance of aerosols carrying germs. Eat an anti-inflammatory diet, exercise appropriately, and do breath work, meditation, yoga etc. to reduce stress. Consider an Integrative Medicine or Functional Medicine consult. Sleep is when the immune system recharges and adapts. I have been finding Muse headband neurofeedback and the OmniPEMF devices to reduce stress and improve sleep. I would never have believed it, but they work for me. The sleep data is clear. I wear a P100 respirator with a cloth mask over it whenever I go into shared air with more than two people. At a minimum, wear a genuine N95 (does not leak like KN95) whenever you are in clouds of germs. Even if you don't want to wear these effective masks, keep them handy in case you have to suddenly go into the ER for something or to help someone else. Sometimes people look at me funny, but that is better than being dead or crippled by covid. MM is a very complex disease and the road is winding. Keep a notebook. Participate in a support group. Even if you say nothing, you will learn tips and tricks and get team support.

Anyone has an idea what brand of protein powder should I take after my SCT to improved my white cells and immune system. Thank you

Hey all I am getting my Covid shot and Pneumonia shots today follow up with Tylenol. Anyone had there shoot with any side effects. Imine was Kappa IGa Oh this morning every joint in my body is on fire. Won't do all 3 again they added RSV

I am having hyperparathyroidism - high blood calcium, lots of aches, high parathyroid hormone etc. The increased general aches are the most troublesome side effect so far, but doing nothing risks kidney, bone and heart health so I have to act. My doctor tells me that she sees this often in people who have had upper body, neck and head radiation in their pasts. I had this as a child, radiation to shrink my adenoids. I am wondering whether any other MM patients here who have had radiation in their upper bodies or necks to deal with spine pain or for some other reason have developed hyperparathyroid issues. I am scheduled for surgery in early November - they have visualized one of the four parathyroid glands that is enlarged so will take that out, then while I am on the table they will test my parathyroid hormone level - if it has come down they will close me up - if not, they will take the rest of the glands, leaving only one half of one of them which I am told is sufficient to produce enough hormone. So - has anyone else faced this?

Anyone on kyprolis? Side effects? Also Sarclisa? 6 hour infusion!

I've been recently with diagnosed high risk mm and am on the quad therapy (DRVD) through two cycles and so far have seen my key cancer markers dropping very well. I'm now trying to decide where to have the SCT done in mid November. I live in Chicago and deciding between University of Chicago Hospital (Dr. Derman) and Mayo in Rochester (Dr. Dingli). My initial treatment has been through U of C but received a consult at Mayo. Has anyone here been treated at Mayo or U of C for SCT or otherwise for myeloma? Would appreciate any feedback!

I am a IGG kappa patient , aged 69 , active , and pretty healthy other than MM I have t 11:14, and I am under the care of an amazing MM specialist in Toronto, Canada Started induction in March this year, on DRD. I elected not to take V due to already having some foot neuropathy. I had MGUS for nine years and SMM for 2 , so had plenty of time to read and learn and research. Knowing my own body well , and my co - morbidities , I decided against having a SCT. There is no guarantee it will definitely give me a long or lasting remission, it’s not an easy process or recovery for many , and it does not mean I will survive longer , necessarily. My caregiver is my 71 year old husband , who , I know is finding this diagnosis difficult, and may not cope with a long recovery on my part , and who also has his own potentially serious health issues. Even if you decide on a SCT , the chances are you will still stay on maintenance drugs , so what’s the point ? You also up your risk of secondary cancers with high dose Melphlan , even more than just on Rev alone. I start maintenance this month , and am so happy to have the Dex gone ! I generally feel well and manage my side - effects without much trouble , generally. Doses can always be reduced / changed etc I believe new and improved treatments are fast emerging in myeloma , and there will be more options to keep us going down the line , hopefully. SCT, in the near future, May no longer be the standard of care for most. All the above is just MY opinion , and of course your decision is very personal , taking all your own factors and your doctor’s recommendations into consideration- and your own gut feeling. My best wishes , going forward, whatever you decide

Can either Zometa or Rev irritate areas in the joints or bone where previous surgery has occurred?

Hello. This last week I found out I was positive for amyloidosis lambda light chain. I was dx in 2023 with SMM but had progressive neuropathy , CTS, autonomic dysfunction and afib and junctional rhythm. After three biopsies they finally found it. Starting on Dara + Cybord on Thursday. If any one could tell me if they have this and how they did with this regime? Thank you.

12 years ago I'd never heard of MM. My beloved Wife died after fighting this disease so heroically for all those years. This year, I also learned that, a member of the Royal family whose Coronation I attended in 1953 sitting on my father's shoulders above the crowds, also had a chance to shine a light on this terrible affliction but chose not to. A huge opportunity missed, I feel.

I am a year and a half post transplant and on maintenance Pomalyst. I have a lot of problems with my skin especially my face with it scaling up and peeling. When I am on my off week it seems to get better. Does anybody have any suggestions for creams, etc that might help with this.