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Hello David,
First of all thank you for the effort in sharing and educating folks on MM. I was diagnosed with MM in Mar 2020. After the standard VRD induction, I underwent HDM based ASCT in Dec. The first ASCT was successful and I was in CR. However, I have a high risk MM. The doctors advised a tandem. I underwent a second transplant in April. My second transplant was Super Beam regimen. Currently home and recovering. I’m hoping for a full recovery and CR.
In prep for post transplant, I wanted to reach out for the thought on Revlamid maintenance. I’m 48 years old. All the studies show a better PFS to be on Revlamid Maintenance. But there is information based on age.
Given my age, tandem transplant and CR, can you share your thoughts on maintenance therapy.
Many thanks in advance for your time and guidance.
Thanks
Seshan Sarma
Hi Seshan-
I am sorry to read of your MM diagnosis however it seems as if you are treating your MM aggressively and it seems as if you have researched your situation thoroughly.
Having had few questions about the “Super-Beam therapy,” I thought I should link and excerpt some info. My thinking is that the “super-beam therapy” is the ASCT procedure that the University of Arkansas (Little Rock) pioneered under Bart Barlogie?
Also, when you say that you are “high-risk” it means that you have genetic abnormalities that are the reason why you chose to have the second ASCT?
If this is correct, my thinking is that this procedure is
very aggressive- much toxicity but you are young and high risk-
high risk, high return meaning possible long PFS and possible OS
genetic abnormalities can present a sort of wild card or unknown outcome for your situation…
The short answer to your question about low-dose Revlimid maintenance therapy is that it depends on your response to the Super-Beam Therapy meaning, how deep is your CR (complete remission). You didn’t mention MRD negative or positive status…
Since that answer doesn’t provide much information for you I will elaborate further.
In my experience, conventional MM focuses on the short-term. By short-term I’m talking 3, 4 maybe five years, maximum. You have achieved a complete response which is ideal. However,
there are a number of studies that cite the possible late stage side effects that can come with the amount of chemotherapy that you’ve had.
according to research, maintenance therapy does not provide gains in OS (overall survival aka length of life)
My point is that at 48, you have treated your high-risk MM aggressively which will hopefully result in a long PFS. But more toxicity will not result in longer OS and my increase your risks of long-term and late stage side effects.
Let me know if you have any questions. Good luck,
David Emerson
“While maintenance or continuous therapy with Revlimid is the current standard of care for patients with standard-risk myeloma, sub-group analyses of high-risk patients in clinical trials has established that Revlimid maintenance does not prolong overall survival for many patients with high-risk cytogenetic …”
Super (S)-Beam for Advanced and Refractory Multiple Myeloma (ARMM)
https://www.researchgate.net/publication/336481252_Super_S-Beam_for_Advanced_and_Refractory_Multiple_Myeloma_ARMM
“Background- Despite availability of novel agents, many MM patients still relapse and require salvage interventions. In the Arkansas program, we have attempted to procure initially sufficient hematopoietic precursor cells, for use in high-dose therapy salvage regimens once phase I-II trials have been exhausted.
We are reporting on the efficacy in terms of response rate, EFS and OS of ARMM patients receiving S-BEAM.
S-BEAM comprised standard BEAM (
carmustine 300 mg/m2 on day 1,
etoposide 200 mg/m2 days 1–4,
cytarabine 400 mg/m2 days 1–4,
melphalan 140 mg/m2 on day 5)
with the addition of cisplatin (10-12.5mg/m2/d CI × 5d),
bortezomib (1.3-1.5mg/m2 on days 1 + 4),
thalidomide (100-200mg/d for 5 days) or lenalidomide (25-100mg/d for 5 days),
DEX (40-100mg/d for 5 days) plus rapamycin (3mg d1, 1mg d2-5).
Results The characteristics of 147 patients treated included prior transplant (Tx) in 67% (2Tx, 29%; =>3Tx, 11%), and prior exposure and resistance in virtually all patients (92%) to bortezomib, thalidomide, lenalidomide applied in VTD, VRD or with chemotherapy VTD-PACE.
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Hello again David,
Thank you for replying ASAP.
I read all your comments and links regarding Revlimid toxicity vs benefits and archived all your videos since my MM diagnosis stage 2 in may 2018.
I find all comments understandable and judicious.
As you imagine, I already know quite a bit about the « official » benefits and side effects of being on LDRMT.
It is nevertheless conforting to have an other perspective of someone who can talk about MM thru his own « 25 years off » experience.
Osteoporosis led to 3 compression vertebral fractures.and lower back arthrosis for wich my oncologist prescribed a once a month IV session to fortify my bones.
Concerning Revlimid side effects, I had a minor rash and some short lived fatigue episodes in the first months of Revlimid intake.
For the past months although, diarrhea is my main concern since it can happen without minimum notice day or night.
I told my oncologist and he was almost convinced that Revlimid is the culprit since it prevents the proper assimilation of bile acid thru my intestines.
He prescribed some anti cholesterol tablets for me to take everyday (2 grams of Colestid) away from my other medication, Colestid should prevent malabsorption of the bile and help alleviate diarrhea episodes.
Although reluctant to take some more medication, I am seriously considering starting taking Colestid soon as the episodes of diarrhea are to frequent and bothersome as you can imagine.
As you expressed in your latest video, there is no obvious contradiction in healthy nutrition and supplementation on the contrary according to latest studies on the subject linked on your blogue…simple and logical conclusion anyway.
Thank you for your well documented blogues and videos.
Your support and experienced input are appreciated.
Regards.
Marc
Hi Marc- It looks as though you are managing your MM as well as can be expected. Thanks for the kind comments. Good luck and hang in there,
David
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