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My Husband Had Bone Marrow Done End Of July. Checked The MRD, Since He Is In A Trial , His Test Has Not Been Sent In,

A MyMyelomaTeam Member asked a question 💭
Evergreen Park, IL

My concern is. What if his MRD is deep and perfect. And he’s still going through major trial chemo. He never feels good. Light chains have been 0 for 8 months. Blood great

December 4, 2022
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A MyMyelomaTeam Member

I am so scarred that I want to test more often than every 3 months. So I have 2 hematologists that I see and one GP. I take a complete battery of tests once a month. The MD knows what I am doing but the other two don’t.

I watch every video on YouTube by the best doctors all over the world. It gives me a much better understanding of what my doctors are doing. And it gives me a level of understanding high enough to challenge them if I see that they are not up to date on recent findings.

Doctors seem to look at us statistically as a group. Even back to a time when they said that smoldering myeloma was a pre cancer. That is a misnomer. When you have 10 percent plasma cells in your bone marrow, 8 percent of those cells are cancerous. In fact, any time you have an M protein show positive on a blood test, it came from a mutated and cancerous plasma cell.

In Smoldering phase there may be only a 40 to 60 percent chance that the cancer will get to the MM stage. But I am just looking at a sample of one. I want, at all costs, to avoid having the cancer getting to the MM stage. A 40 to 60 percent risk is too high.

And after you slip to the MM stage, one must wonder if there was something that their doctor could have done.

The heavy duty and toxic chemotherapy drugs are typically saved for the MM stage. But there are now immunotherapy that likely can reduce the probability of the cancer reaching the MM stage.

New research is suggesting that this probability can be reduced to zero.

We are too slow. Other countries are using kar-T treatments that we are just beginning to test. China is one of those countries.

This adventure has driven me crazy. It is all that I can think about.

December 10, 2022
A MyMyelomaTeam Member

Wendi, I agree with others. You need to not only understand, but agree with the treatment. I think it's time for you to move on and get another opinion. I finally started seeing a Multiple Myeloma specialist as a second opinion to my oncologist. He said if I have a bone marrow biopsy come back negative for MRD twice in 6 months, I should not have to be on any maintenance meds. What I liked most that he said was - side effects are not a badge of honor, you do not have to put up with them when there are so many options. I am ready for a high quality of life versus "living with" the side effects that limit my activity.

December 4, 2022
A MyMyelomaTeam Member

You always have the right to refuse any and all treatments and if needed, drop out of a trial. You must look out for yourself first.

I saved myself by changing Doctors at the beginning and by stopping treatment after I achieved MRD Negative.

I only wish I had stopped Velcade sooner than I did. I was saying Velcade is hurting me but their best intentions of following the “standard of care” had them press on until I finally said - No. But that was 5 months into my 7 months of treatment and too late - my neuropathy is very bad and may be permanent.

December 4, 2022
A MyMyelomaTeam Member

Most likely a coincidence regarding the MSpike and taking C3 Curcumin. I was taking 4 grams daily during Induction, then 8g for months and now 8g daily. I’d recommend 4,000 to 8,000 mg daily (4g to 8g).

Note that C3 Curcumin is a little bit of a blood thinner - don’t use with other blood thinning meds. I was taking 2-81mg low dose Aspirin. At 8 grams of Curcumin, I started to bruise easily. I stopped the Aspirin and the issue went away

December 13, 2022
A MyMyelomaTeam Member

I am taking the Curcumin C3 already... and I was a little surprised... my M-Protein went up by .1 after doing it for a month. Maybe I do not take enough... I take 4 tablets a day.... sometimes 6

December 13, 2022

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