Copay fund open: https://copays.org/funds/multiple-myeloma-healthy-equity/ Household Income Requirements: 500% or less of Federal Poverty Guideline (FPG) (adjusted for Cost of Living Index (COLI) and number in household) Insurance Requirements: Medicare, Medicaid, or Military Benefits Residency Requirements: Must reside in an eligible county

i was wondering if anyone has experienced mid to upper back pain after taking Prolia or Xgeva? I don't mean the acute pain that you get after the shot for a few days but rather chronic back pain and back fatigue. It dawned on me the other day that at the end of the 6 month interval right before i am due for another shot and the Prolia is wearing off, that my back pain is much improved. So wondering if all this back pain is being caused from Prolia. I have been on it far too long...7 years and would stop tomorrow except for the pesky rebound effect which no one really seems to know how to manage.

I have Multiple Myeloma and Amyloidosis. When I was getting treatments for several months, my joints started making grinding, popping and cracking noises. I told my doctors about it but they didn't seem concerned. After my treatments and stem cell was done, my joints kept on making the grinding noises. I thought in a couple of months to a year it would stop but it never did. It's a little over 4 years since my stem cell transplant and I found out that my right knee is getting a full knee replacement. Before my treatments I never had any problems with any of my joints. They said I have bad arthritis in my right knee and it really damaged the bone. I'm just wondering if the treatments caused my arthritis to begin with. I guess I'll never know for sure but was just wondering if anybody else is going through the same thing.

Hello. I recently received a stem cell transplant two weeks ago. I barely have an appetite, but I keep eating foods to gain my strength. Unfortunately I haven't been able to swallow my pills. If I do, I always vomiting them back up, along with anything else I ate during the day. Has anyone else experienced this? I'm hoping I don't have an infection. Since it's the weekend now, I'll follow-up with the doctor's office about this on Monday. Thanks.

I was wondering if a person is supposed to get their vaccinations again after CAR-T. I had a stem cell transplant two years ago and I got my vaccinations after that. I was told by my doctor that it was not necessary after CAR-T. A myeloma fellow who saw me with my doctor last visit made reference in his notes that I needed to get the vaccines. What are your experiences?

Good evening, My husband was diagnosed 2023 and is now considered non secretory. Currently on Kpd with most lesions showing no activity but new ones appeared on last PET. Looks like we may be heading towards CARVYKTI CAR T. My question to this group in particular is what was your experience if you received CART T therapy? Thanks!

Hello 😊 I was just wondering what everyone’s suggestions/experiences are with the stem cell transplant process. Mostly after coming home from after. Thank you

I wanted to share this Interesting article in Nature Magazine about research to alter T cells in the body vs shipping them off to a manufacturer to reengineer. https://www.nature.com/articles/d41586-025-01570-6

Please note that the Patient Advocate Foundation has just opened up co-pay relief for MM. Criteria is 500% or less of Federal Poverty Level, Medicare, Medicaid, or Military benefits and reside in the US. Max is $7,500/yr. Complete details can be found at: https://copays.org/funds/multiple-myeloma/

Please note that the Patient Advocate Foundation has just opened up co-pay relief for MM. Criteria is 500% or less of Federal Poverty Level, Medicare, Medicaid, or Military benefits and reside in the US. Max is $7,500/yr. Complete details can be found at: https://copays.org/funds/multiple-myeloma/

I am 65 years old and was diagnosed in September 2014. I have posted before but agree having your age and diagnosis date is a good idea. I am seeking information regarding the CAR T treatment. I am scheduled for the CAR T the end of July. Because I am not close to a treatment center I will need to stay in a hotel. I am hoping people can share their experience and precautions you took to eliminate exposure to germs and any other helpful suggestions. My understanding is your immune system is compromised, and precautions need to be taken. I went through a stem cell transplant in 2015 at the same facility and stayed in a hotel, so I am aware of precautions, but this is a different treatment. Thank you

Hello everyone. I was diagnosed in June 2024 and still in the watch and wait stage. I am glad to see these post about the foods we eat. I think in the last 6 months I have been eating more junk food. And I have been feeling pain in different parts of my body.

Experience with selinexor?

How do I go virtual to the MM suport meeting in Cranston, RI

Anyone have t17 tp53?

My husband had a successful stem cell collection a few weeks ago. However, his doctor told him that some of the cells contained myeloma. Does this mean that these few myeloma cells will be transplanted along with the stem cells when he gets his transplant?

I think people that post should state their age and when they were diagnosed and when they started treatment. I was followed for years but diagnosed with myeloma 4 years ago at age 78. I have responded very well to first line treatment and am in remission. But at my age we did not think stem cell transplant made sense.