Is Muliple Myeloma Still Incurable? | MyMyelomaTeam

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Is Muliple Myeloma Still Incurable?
A MyMyelomaTeam Member asked a question đź’­

How long can one stay in remission without treatment and is it advised to stay on something like revlimid for a type of maintenance strategy. I've been in remission since 2017. Im not on anything but constantly struggle with my hemoglobin and iron counts. Our friend on this myeloma team was a nurse and she was in remission for like 18 years then she gets struck with liver cancer. This was so sad.

posted December 3, 2022
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A MyMyelomaTeam Member

Hi Luisa, we are all different. Most of us require maintenance treatment to keep our myeloma under control. Make sure you are seeing a myeloma specialist and are getting checked frequently. My center does yearly bone marrow biopsies with MRD testing to monitor my myeloma. I get a myeloma panel every 3 months as well. Marcia Holman actually died of metastatic breast cancer that had metastasized to her liver. She was an amazing person 🙏💪💜

posted December 3, 2022
A MyMyelomaTeam Member

Interesting so I had a less than 5% myeloma cells in my bone marrow aspiration at diagnosis I had one plasma cytoma that was removed, surgically and treated with radiation 300 gray for 10 cycles

My oncologist was not particularly enthralled with the response to the radiation. Personally, I thought it was too low of gray, but whatever here we are so I was on Watch weight and then January of this year I did induction with RVD plus D and then at remission, I did a stem cell transplant in July. I am in remission now I hope to stay that way three month bloodwork was solid so January is the next check in

posted November 7, 2023
A MyMyelomaTeam Member

Get a clonoSEQ test - preferably from a Bone Marrow Biopsy. If you’re Negative at 10 -6 (no cancer per million cells), lookup the MRD-SURE Report (web search) and discuss with your Doc about being on Monitoring without any MM Meds. My Story @A MyMyelomaTeam Member has a link to a video by Dr Costa where he explains the benefits of being off All MM Meds if you’re 10 -6 Negative. Secondary cancers is one of many reasons to be get off All MM Meds, if you qualify. Avoiding Jaw bone death (has happened to many on this forum) is another. There’s also references at my Story as to the benefits of C3 Curcumin. See the link to the New NIH Study released this year about C3 Curcumin.

In many cases, the practices of the “standard of care” are keeping people on MM Meds far too long. New Case Studies released just this year are proving Less is Best, if you’re in Complete Remission at 10 -6. This year, there are posts of More and More People that are Transitioning to just Monitoring at their Doctor’s suggestion.

posted December 10, 2022
A MyMyelomaTeam Member

My MM specialist wanted me to stay on Revlimid maintenance indefinitely, even after achieving complete remission following my transplant. Unfortunately, Revlimid made my neuropathy worse, as did 2 other meds I tried for maintenance (pomalyst and ninlaro). So I am off all meds for now, which is a bit worrisome, but so far so good.

posted December 4, 2022
A MyMyelomaTeam Member

I am not as brave, I don't want another cancer or disease, so I'm risking my life by not continuing chemo...for now, for years;hopefully! I can't say anymore because not everyone feels the same

posted October 21, 2023

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