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Members shared personal experiences about stopping maintenance treatment after two years, with many describing improved quality of life,... Read more
From my original Stage 2 - 5915 IgA with t4;14 high risk, I stopped everything immediately in June 2022, after my first clonoSEQ Blood test showed that I was MRD Negative at 10 -6 (none per million cells tested).
I remain on Monitoring Only, MRD Negative and at 72, I’m in excellent health.
Very purposely I never collected my Stem Cells (due to the chemicals involved) and had No SCT.
I’ve detailed my experience at my Story @A MyMyelomaTeam Member.
I’ve learned to Trust my Labs, improve my health by a Clean Food Diet, Supplements and plenty of Exercise - and to Verify through Labs and clonoSEQ Blood Tests.
While I remain MRD Negative (via Quarterly Blood Sample clonoSEQ), I remain on No MM Meds.
I disagree with the AI Response. Even when tolerated, the long term use of MM Meds continue to be Immune Compromising and leave a person vulnerable to infections and secondary cancers.
@A MyMyelomaTeam Member
Do you do a Quarterly clonoSEQ Blood MRD Negative Test?
This Blood Test can see any new MM Activity 6 months before anything will happen to your monthly Labs.
I’ve been using this Test, Quarterly since June 2022.
The clonoSEQ is significantly more sensitive than anything we get in our MM related Labs
Details at clonoSEQ.com
I stopped after 2 years when my doctor gave me the choice to. I have been off all meds for 3 months and just did my monthly blood work and numbers look great. I will now shift to blood work every 3 months and hope to get the same results. If not I can always say it was good while it lasted, most of us will relapse at some point or another, some of us many times, but it is not the end of the world, expected and managed very well.
@A MyMyelomaTeam Member
Hi Robin,
When I saw my new oncologist a month ago, she took me off Revlimid maintenance because my labs were good. She said they don't like to keep patients on Revlimid more than 2 years because it can cause additional cancers.
I was so happy!. Now I'm back, to not having to take any drugs again 😃😃Don't get me wrong. It was MM drugs that saved my life, and I am very thankful for them, but I do not want a lifelong commitment to them. Also, I'm feeling so much better everyday.
Below is a video that contains four oncologists who talk about the Endurance Trial where results of the trials findings suggest that Revlimid be discontinued after 2 years because it did not improve the Multiple Myeloma Overall Survival Rate.
https://youtu.be/ucKyV8OjBpc?si=-Iur5xMLUjX9HB4V
Vicki7 😊
Since data states we will die from something besides Multiple Myeloma; I'm assuming, from treatment drugs, or damage caused by them....OR MM. So I take a risk and live with and managing by common sense ( I think ),but I do the regular blood tests and now an MRI every six months. I'm not taking a lot of supplements because I question their validity too. I take basic drugs With food and eat mostly in a healthy way. I don't drink, smoke, consume alternative drugs, or eat takeout foods. I try to keep track of what foods I should not be eating....especially in these times. Bottom line, I'm taking better of myself now, then before my diagnosis; some things I don't even desire anymore. My trust in a lot of things have changed, so now my poor brain has to work harder😉
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