Want to talk about Multiple Myeloma: Anyone else?

The situation in Spain, where I live, is rather different than in US.It looks as if everything is only geared towards treatment and no really support. We have a systema National de Salud, where there is no dialogue and only one treatment - take it or leave it and a private system with less waiting time to get a consultation and it is rather expensive. The private system give you only a little more freedom to choose the treatment, but still the only look at the medical side and not what other kind of treatments you do, inclusive diet.
I lack a system where your case is taken up in pleno, but that is probably not possible due to that most patients have very little knowledge about there body and how to maintain it.
Ole

@lasfarolas I daresay that during the pandemic of Covid, many patients have become isolated, and can probably relate to the picture you have painted, of little support.

This is where being our own advocates for our personal health and education becomes so important. And for those of us in rural settings, or with severely compromised immune systems, we need to continue to isolate and protect ourselves. To me, this is where the value of Mayo Clinic Connect comes in, sharing our stories and experiences virtually with others! It certainly makes me feel less alone.
Ginger

Thanks so very much for sharing your info. Very helpful! Hopefully the 6 more chemo treatments bring that M Spike number down. Thanks

I’d like to hear results of stem cell transplants. I’m trying to decide whether to get a transplant or maintain my MM with chemo. I am a 74 year woman in good health but my age is a big concern. My understanding of transplants is it is hard on your body and could cause damage to your organs and you are very susceptible to infections.
I’d like to hear from someone around my age that had to make this decision and what they decided to do and how it turned out. I was diagnosed with multiple myeloma July 2022 with 45% cancer in my bone marrow. I am now at 10%.
Any info would be helpful.

My husband is 78, was in very good health and was diagnosed with high risk MM in May 2022. He went through 4 rounds of Chemo and had a stem cell transplant at Mayo Clinic Rochester on Dec. 9th. It was not easy and he did spend 10 days in the hospital. He had a very sore throat and esophagus which made it difficult to eat but had very little nausea. Very few other side effects. His care was exceptional and you do want a good caregiver. He did have some atrial fib. and a few sincopal episodes.
He got home on Dec. 31st. and is feeling great. He had no organ damage but will be consulting a cardiologist for irregular heart beats. He will be starting maintenance chemo in April.
He says it is the hardest thing he has ever done but would go through it again if he had to.
It is a hard decision but if it will prolong your life it is worth it.
Best of luck to you with whatever decision you make.

@callie28 , @judithc I hope to give you a little information and/or encouragement with my husbands story.
He was diagnosed in spring of 2010, the first transplant at Mayo Rochester left him with a little residual disease. So they gave his body a few more months to recover and as the myeloma reared up, he went on a second induction therapy of 4 months, and back to transplant. By this time he was 70 but overall still in pretty good shape. This transplant was much harder on him, although the first wasn’t really easy. Again the Mayo team were rock stars in knowing what to expect and handling it.
This time he got a complete response, revlomid maintenance was recommended and he took that for two years.
He has had a few years at a time completely treatment free, and plenty of months of treatment that weren’t really easy, but not horrible. He will soon reach 13 years with myeloma, I believe this might have been an easier time had he been diagnosed earlier. He had bone lesions in virtually every bone when diagnosed. I believe his Mayo team and our most awesome Mayo trained doctor locally, have helped give us the gift of the last 13 years together.
If you have any questions for me, please feel free to tag me.
@judithc where do think you might be looking to have transplant?

My mother who was 77 in 2015. Found out she had mm in December. After she fell and broke her back. She stayed in bed at home until I called an ambulance for her in late February. She passed away April 1st. But the reason was because they started her chemotherapy, then gave her a colonoscopy bag, then put her in surgery for a pick line for the chemo. Her body was very weak by then and she contracted staff infection. Which she couldn’t fight off. When doctors tell you what they want to do to your loved one you think they know what they should do but I think sometimes we should consider if they need some time to get stronger after surgery especially if they are on chemotherapy. Just my opinion.

I agree. So sorry about your mom.

Thank you for replying. It sounds like they have him on a good treatment plan.
If I have it done, I’ll have performed at mayo in phoenix.

My wife was treated at Md Anderson and Mayo. Both gave the best treatment, unfortunally when they discovered her cancer it was Level 3. The best place. Help in Healing Home at Mayo Village is a good place to stay