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Shipmates, the reason I am asking this question is because a dear friend of mine, Susan, has developed another cancer. She is not in our group. I received some disturbing and upsetting news from her yesterday. She was diagnosed with MM and had her stem cell transplant in 2021 and has been in remission. She has been taking Revlimid ever since for her monthly maintenance therapy. Long story short, she had been getting bruises and diarrhea for a short time. Well, she has now developed… read more
Answer Summary
Members responded with deep compassion to the question about developing a second cancer while on maintenance therapy for multiple myeloma,... Read more
Get another Opinion and another Doc who will work with you in a Labs Monitoring Only Program.
Get the Blood Sample clonoSEQ MRD Test. If you’re Negative to 10 -6 (none per million cells tested), you’re much better to be Off MM Meds and continue with a Quarterly Monitoring Protocol.
Dr Costa did the Masters Trial. He originally stated to Stop MM Meds when MRD Negative - that was 4 years ago when they could only test to 10 -5(none per 100,000).
Dr Costa has continued to track the patients of his Trial and continues to state it’s Safer to Keep the Meds in Reserve, so they can be used again if ever needed.
MM Meds are very immune compromising and leave a person vulnerable to infections and worse.
Being Off MM Meds and a Quality Lifestyle (no junk foods, etc), helps the body heal and recover to Normal Labs.
I’ve been with my Onc for 5 years. We Monitor my Labs and Blood Sample clonoSEQ MRD Negative status.
I remain on No MM Meds and require No Older Age Meds that a person of 72 would typically need.
Many do get secondary cancers due to the significant reduction of the immune system that the Treatment Meds cause (not from the MM Cancer, once it’s under control by the Treatment Meds).
Living long term on Maintenance Meds bring their own Risk.
Dr Costa (Masters Trial) says to Stop MM Meds when getting to MRD Negative (he stated this years ago in reference to 10 -5 — people are now easily getting to the more durable 10 -6, thanks to newer Treatments). He said this so that the Meds would still be available if ever needed in the future and due to their ongoing burden to the health of a person because of their immunosuppressive effects. He discussed this on a HealthTree Podcast a few years ago.
Dr Costa has done multiple follow up Presentations to his Masters Trial and continues to confirmed his findings.
@A MyMyelomaTeam Member,
Call an Uber and go to the ER. Your kidneys could be in trouble. The problem is, you don’t know, so go. Do not drive. I will be thinking of you until you tell me what’s going on. Nausea to me means kidneys. High calcium can affect your mental state, cause nausea, weakness and irregular heartbeat. Low red blood cells or hemoglobin can cause dizziness. Go get checked. Don’t wait until tomorrow. If your Primary has an emergency line, call them, and I bet they will tell you to go to the ER. This way, you get your labs early!
Paula🌹
Get a clonoSEQ Blood Test. If you’re MRD 10 -6 (no cancer per million cells tested), this is a very deep and durable Complete Remission.
In this Case, it’s worth Considering a Labs Monitoring Only Protocol, without Any MM Meds. Once MRD Negative, a healthy Lifestyle (a Quality Diet, Supplements and Exercise) can help restore the Immune System to function as our best Defense.
Search and read about Dr Costa and his Masters Trial. Years ago, Dr Costa stated that when a Person reaches MRD Negative (at that time, just 10 -5 (none per 100,000)) they’re better to be Off MM Meds so they can use them in the Future if ever needed again.
Dr Costa has performed Annual Follow Ups with the Participants of his FDA Case Study and continues to Recommend this.
A few years ago, Dr Costa did a HealthTree.Org Podcast where he talked about this in detail.
I had to deal with a single Plasmacytoma in Sept 2023. Treatments killed it off in a few weeks. I returned to MRD Negative by 6 weeks and I stopped All MM Meds. I returned to Quarterly clonoSEQ Blood Tests, as a Monitoring Protocol and remain in excellent health (now at age 72).
If I’m ever MRD Positive in the future, I’ll take a brief Treatment of 4 to 8 weeks and after returning to MRD Negative, I’ll return back to my Monitoring Protocol. My Onc completely supports this Plan.
Revlimid, at any level, is a poison. Every month, to receive my next dose I had to do a Phone Interview where I had to Acknowledge this.
My Induction in 2021, had DarzFasPro + RVd. Revlimid is the only of this group that is an Anti-angiogenesis that kills off the Blood Vessels that feed Tumors, like a Bone Lesion Cancer.
As such, Revlimid is a very important Med, so you want it to be able to work when you need it. Keeping it in Reserve is an important step.
Our Bone Marrow Cancer is a Plasma Cancer that is a very slow acting disease. It’s not a solid Tumor like Bone Lesion Tumors.
@A MyMyelomaTeam Member A second opinion is always a good option. Our local hematologist/oncologist referred me to Mayo Clinic in Rochester because my tests kept contradicting each other. My oncologist at Mayo made the official diagnosis of MM but worked closely with our local oncologist for my treatments. I still see my local oncologist every 3 months and meet with the oncologist from Mayo either by zoom or in person every 6 months. I have blood tests here every 3 months and they are analyzed at Mayo with results shared with my local doctors (both oncologist and PCP).
If you decide to get a second opinion, I would highly recommend Mayo. Because we live in Minnesota, I went to the one in Rochester, MN, but they also have clinics in Phoenix, AZ, and Jacksonville, FL.
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