“Other major considerations of maintenance therapy revolve around concerns for toxicity including second malignancies..”
Hi David… my name is John. I was diagnosed with Multiple Myeloma at 40 yrs of age. I went to the hospital with back pain and they found some lesions on a couple of my disc and fewer. I went through 5 rounds of chemo followed by a stem cell transplant. Since then, I was put on low-dose maintenance therapy of 10 mg of Revlimid and there are no traces of m protein in my system.
At this moment, I am feeling terrific, besides some pain that I get around the laces where the lesions were found, but overall back doing all the active stuff that I always did (ie hockey, weight training).
I always kept myself in good shape, but since being diagnosed I wanted to make sure that I was putting food back into my body that, I thought would help ward off the Myeloma from coming back. I guess, something I can do than just asking the Revlimid to do all the work.
I’m very much into nutrition, and I have read some articles about foods that aid in fighting this disease.
If you have any info on nutrition that can help the fight against MM, I would very much like to see it. I’m not a fan of popping pills just to make things go away and I do believe Better nutrition Does help getting rid of diseases.
I enjoyed reading about your journey and applaud you on your 25 yrs beating this disease. You are an inspiration and I after reading this, your story made me feel that nothing is impossible. All the best
Thanks for reaching out. Great to read that you are in complete remission. Especially great to read that your life is pretty-much back to normal if you can play ice hockey again as well as lift weights. I have a couple of hockey-playing pals from college. Both are still playing old-man hockey and loving it. I’m not saying that you are an old man…:-)
- MM diagnosis
- induction chemo (RVD?)
- Autologous stem cell transplant (where did you have yours?)
- low-dose maintenance Revlimid
is an excellent example of the “standard-of-care” for newly diagnosed MM patients. How old are you now?
I have always believed that conventional oncology has gotten good at stabilizing newly diagnosed MM. Standard-of-care induction therapy of RVD, achieves almost a 100% response rate, with 80% of NDMM patients (I think) achieving at least a partial remission. Many more VGPR and CR. Some even MRD negative…
And that’s great, as far as it goes.
The challenge for the 40 year old, as I see it, is the long-term picture. At this point in my response, I have to list my assumptions. Correct any that you don’t agree with Jamie.
If I were a 40 year old NDMM-
- My OS (overall survival aka length of life) goal would be to die of old age in my sleep
- My quality of life goal (QOL) goal would be… minimal pain and suffering.
The standard-of-care for relapsed, refractory MM patients is to cycle through chemo singlets, doublets and triplet regimens based on the drug classes below:
- Immunomodulatory drugs-Thalidomide, Lenalidomide (Revlimid), and pomalidomide (Pomalyst)
- Proteasome inhibitors-Bortezomib (Velcade), Carfilzomib (Kyprolis), and Ixazomib (Ninlaro)
- Monoclonal antibodies- Elotuzumab (Empliciti) and daratumumab (Darzalex)
- Immunotherapy- Isatuximab (Sarclisa)
- Nuclear export inhibitors. Selinexor (Xpovio)
- Glucocorticoid- Dexamethason, Prednisone
all in and effort to reach remission again and again, hoping to avoid multi-drug resistance (MDR) and end-stage MM.
The challenge faced by MM survivors relapsing after their first remission is that remissions get shorter and shorter, MM develops resistance to chemotherapy and finally, because of shorter remission and chemo resistance, MM survivors undergo more and more chemo meaning they undergo more and more toxicity, more and more frequently.
The five most common side effects are also the five most common causes of death for mm survivors. See the post below.
The answer, again in my opinion, is for NDMM patients to minimize toxic therapies as much as possible while including non-toxic MM therapies. This includes maintenance therapy. I consider integrative therapies in this as well- integrative therapies shown to enhance the efficacy of conventional chemotherapy.
Let me know if you have any questions. Good luck,
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“What is multiple myeloma?
In my experience the standard-of-care
approach for multiple myeloma patients is misleading. Considering only
FDA approved MM therapies represents short-term thinking. Newly diagnosed multiple myeloma patients are put at a huge disadvantage
if they think short-term.
In my experience, MM is a blood cancer that combines potentially life-threatening symptoms and a series of life-threatening side effects. All at the same time. Let me explain…”
“Specifically, controversy surrounds the optimal use and duration of maintenance therapy. We conducted a comprehensive literature search to analyze the most current literature and to provide recommendations for maintenance therapy in multiple myeloma…
Among the trials, bortezomib and lenalidomide were used with different dosing, frequency and combination strategies amongst different studies making comparisons difficult and limiting the strength of any single recommendation.
Despite the variability, there is strong evidence to suggest that maintenance therapy improves PFS. Data regarding OS is more variable, but at least three trials suggest improved OS with maintenance therapy.22, 27, 31
Other major considerations of maintenance therapy revolve around concerns for toxicity including second malignancies, optimal duration of therapy and selection of agent specifically with regard to depth of response and disease risk stratification, and cost of therapy.”