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[…] Myeloma Patients are ALL “Toxicity-Vulnerable” […]
ReplyThis past Friday was the first I ever heard that I had cancer, MM. It still has to be proved by biopsy but Dr. seems rather sure I have it. Biopsy soon to happen. So all this info is new to me. Thanks for the education.
ReplyHi David, I’m looking for your opinion. Based on recent blood work my Dr wanted to repeat a pet scan and bone marrow biopsy each of which I had 2 years ago. The pet scan was clear and still no lesions were found. The biopsy showed 15% plasma cells originally, now up to 30+%. We met with the Dr today and he is recommending RVD treatment if I choose to start treatment now. He did say it was not urgent for me to start immediately. I have no CRAB symptoms, all my kidney, liver blood work has been good. I am in good overall health. I exercise regularly, follow an anticancer diet and have been using many supplements. We mentioned RVD Lite but the Dr thought because of my health I should do the full regiment. I did send my recent labs to your email last week. We would value your opinion so we can make a decision on what to do. Thank you for all your work! Look forward to hearing from you.
ReplyHi Fred-
I will assume that you have been in pre-myeloma (mgus or smm) for years now. Well done. Your diet, supplementation, and lifestyle all are pre-habilitating you. If you would like to bone up on pre-habilitation, please refer to the guide about this concept in the Pre-MM CC course.
When you choose to begin therapy, the general issue you face is best summarized in the article linked below. In the cure vs. control debate essay, Dr. Rajkumar talks about a high dose vs. low dose approach to myeloma management.
I am generally in favor of another imaging study to get a handle on any bone involvement you have. 30% plasma cells, technically is low but some oncs call it full MM.
Most conventional oncologists will follow the FDA approved standard of care induction regimen of RVD. Conventional mm oncology believes in the importance of an aggressive approach to therapy. That’s just the way mm oncology works in the U.S.
Consider consulting with William Berenson M.D. MM specialist who is a master at managing low dose myeloma.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923461/
Let me know if you have any other questions.
David Emerson
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
ReplyDear David, I am having a period of no treatment.
I am eighty and I was diagnosed in April 2016. I was also diagnosed with bowel cancer later that year. The bowel cancer was tiny and was treated with radiation and surgery before the end of that year. The bowel cancer has not been a problem since then.
I started MM treatment in January of 2017. In my memory it was thalidomide, but I think there were other treatments as well as I remember being in day ward and liquids running into me, also injections into the abdomen.
I soon felt strange sensations in my feet and before long thalidomide was reduced and then abandoned.
The haematologist told me that I wasn’t a candidate for stem cell therapy after all and for about nine months I had no treatment.
May I say here that the only MM symptoms I have had have been difficult nose bleeds and frequent pneumonia; however, these symptoms if that is what they were have not persisted and outwardly I appear perfectly healthy.
I think I began on Lenalidomide early in 2018 because the haemotologists thought my paraproteins (that is the surrogate they use here) had reached an unacceptable level. The treatment was Lenalidomide and dexamethosone. After year the dexamethosone was dropped.
The paraprotein levels came down, became stationary, then started to rise. A new haematologist took over. He doubled the Lenalidomide dose, added dexamethosone and cylophosamide. In a few months this regime got the paraproteins down to two.
At this level I asked for a holiday from treatment as a lot of my life was being spent in the toilet and I had to prepare by not eating for any appointment.
After three weeks my toilet activity is more normal, i.e. once or twice a day,
After the bowel cancer operation I had an iliostomy which the surgical fiends left in place for nineteen months, so my bowel had forgotten what it’s job was. This meant handball between surgery and hamotlogy as to who was responsible for the diarrhoea and loss of bowel control.
Anyway, there’s the whole boring story. I look well, I feel well. I will have a blood test Tuesday week and a hospital review the week after that.
[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
ReplyIm 71 years old and was diagnosed November 13 2020 in stage one with IgA multiple myeloma. I was walking through a stand of dead trees and heard a limb crack above. I snapped my head back and felt a crack in my neck. The mri showed a crack in the C2 and a small lesion. They gave me the news at the Hospital in Tupelo MS. The next day I was on my way to Moffit in Tampa FL. I live in Naples FL only a hundred miles away.
I got the kyphoplasty a couple of weeks later. My team of Doctors scheduled my treatment of RVD- lite to start January 4 2020. I became very sick by that day with my calcium level being 15.8. They admitted in the hospital that day for a week until my numbers came down before starting treatment.
Five cycles of treatment and an ASCT in June. Did very well through the transplant very few side effects. My m-spike started out after the transplant at .03 and began to slowly climb each week to .63. Did a bone biopsy and found seven percent still.
I started back on RVD-lite plus Darzalex. Every week for eight weeks, every other week for 12 weeks, then once a month.
Sorry for the long story but I wanted you to know my story to now. My question is can you survive very long with your bone marrow showing 7-10 percent? I’m very concerned about my kidneys they have me on 800 mg of Acyclovir daily for 6 months. Even my kidney Doctor is concerned of the length of time for that high dose.
My numbers are all very good for my kidneys and my liver and my heart is very strong with clear arteries.
I am very interested in your program and have already bought in. Am slowly working my way through.
God bless everyone with this dreaded desease and I hope everyone is able to live a long quality life
Hi Reed- I replied to your question via your email address- David Emerson
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” Carf. Induced Heart Damage in Multiple Myeloma Multiple Myeloma- Newly Diagnosed Without Intent to ASCT […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
Reply[…] Multiple Myeloma Patients are ALL “Toxicity-Vulnerable” […]
ReplyWhat doses are used with RVD lite? My M-spike has climbed back up to 1.6 and I am scheduled to go back on VRd using 25mg Revlimid,40mg Dex once per week and I am not sure the Valcade dose tomorrow. I am 70 and did 8 courses of VRd from 11/16 to 4/17. I have been off all chemo since then.
ReplyHi Jim,
To answers to your question “What doses are used with RVD lite?” Once a chemotherapy regimen has been approved by the FDA, it is up to the oncologist to determine the dosing schedule. Yes, there is an equation based on body weight but your oncologist decides. The real issue is what, if any side effects are you experiencing? Your m-spike is pretty low so you don’t need to undergo aggressive chemotherapy.
The other issue for you to consider is how did you react to your original 8 courses of VRd? If you tolerated that induction therapy well then again, there is less for your oncologist to worry about it.
I would be remiss if I didn’t mention evidence-based non-conventional integrative therapies. For example, curcumin has been shown to enhance the efficacy of Velcade (bortezomib).
Integrative therapies such as curcumin have been shown to slow multidrug resistance. Let me know if you have any other questions.
David Emerson
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