Thanks David- its great to be in the Beating Myeloma group to help fight my MM. My main question is “How long can a young person live with multiple myeloma?”
I am 38 years old and my wife and I have three babies. I have no choice but to live a long life and be there for my family so am definitely looking for long term MM survival-
Further, an breaking boundaries my diagnostics so far are as I’ve said 16% plasma in liquid portion an they can see 50% in marrow under microscope but still waiting for full results which will take weeks-
My oncologist said that she’s concerned that I need to start treatment sooner than later because of high protein in my blood and regardless of final bmb the treatment is the same.
Shes give me a few months to live without treatment. My calcium is fine my kidneys are fine. I am mildly anemic.
My symptoms are bone pain on sturnum where bone shape has changed, pain on my ribs, hurts with deep breaths coughs and sneezing is hell. I can’t pick my kids up it hurts too much.
Several things. Even the best, most positive MM outcomes of NDMM patients are 12-15 year overall survival stories. If you are 38 and you main question is “how long can a young person live with multiple myeloma,” my experience is that you must consider outside-the-box, not standard-of-care thinking.
First and foremost, begin pre-habilitation. Eat as cleanly as possible, no tobacco, as little alcohol as possible, daily, moderate exercise, supplementation from the supplement guide (omega-3 fatty acids, curcumin, resveratrol- all shown to be anti-MM). Consider the therapies discussed in the non-conventional guide as well.
Secondly, you should see or at least talk with a MM specialist. The information and evaluations you sent me don’t look like they are written by MM specialists or even hematologist/oncologists. The reason for working with MM specialists or at least an oncologist with MM experience is that MM is a rare blood cancer. It is possible that the doctors you are currently working with have little or NO experience working with MM patients.
Certainly NO experience working with a MM patient younger than 60 years of age. Your goal is to manage your MM for the next 20 or 30 years, right? You don’t want to start now by working with doctor with no MM experience, do you?
My understanding of the geography of England is limited. Is the hospital below accessible to you? They seem to have some experience with MM treatments. This experience is important to you.
Thirdly, do you have blood or urine test results that you can send me?
- Complete blood count,
- metabolic panel,
- free light chain assay,
- immunoglobulins, etc.
Dr. Campbell, in his recommendations, says “Urgent staging is recommended.” Have you been given a stage? These diagnostic tests are needed to determine your stage. Your stage is needed to determine your therapy plan.
Your questions:
- “Whats the reasons for not having stem cell transplant to live longer?
- “Is it better to only have chemo?”
- “What other none conventional treatments go along side it?”
all revolve around the same issues.
And those are, the “standard-of-care” therapies for MM all are designed for older patients (65-75) and have a proven 5-7 year average survival. These are proven, actual MM statistics.
I agree that depending on your current stage, you should begin therapy. The issue is how much therapy now, and how will you respond to that therapy? An autologous stem cell transplant is high-dose, aggressive chemotherapy.
The standard-of-care also include some thing called “induction therapy.” This is usually a triplet combination of chemo regimens called VRD or velcade (Bortezomib, revlimid and dexamethasone). You may be able to stabilize your MM with one or more courses of this induction therapy without having to undergo an ASCT.
Less chemo, less toxicity now will mean fewer, if any, side effects now.
The single most important issue that the 38 year old MM patient (you) face is called multi-drug resistance or MDR. All MM patients and survivors eventually develop MDR. MDR means that a person’s MM develops resistance to all forms of chemotherapy and become resistant to them. All MM patients relapse and eventually become resistant to chemo. Chemo stops working.
You want to prevent reaching MDR. That statement sounds obvious…But standard-of-care, aggressive chemotherapy regimens all focus on stabilizing average MM (older) MM patients. All standard-of-care regimens focus on the short term.
While I certainly agree that you must stabilize your MM, I also believe that you must balance your induction therapies with long-term concerns. I think you must balance the short term with the long term.
This resistance varies. About 20% of all newly diagnosed patients do not respond to chemo at all, another 20% of NDMM patients relapse after about 1-2 years, another 20% of NDMM patients relapse after 3-4 years, another 20% relapse after 4-5 years and a small percentage of MM patients have long first remissions- some as long as 8-10 years.
That’s an estimate above but you get the idea.
Okay, I’ve thrown A LOT of information at you. Let me summarize.
- Begin pre-habilitation
- Consider a second opinion with a MM specialist
- Send me your blood and urine diagnostic testing info
“Prehabilitation is not a new concept, nor is it specific to cancer. At its core, prehabilitation is designed to improve a person’s physical and psychological health in anticipation of an upcoming stressor. Furthermore, prehabilitation is part of the rehabilitation care continuum and is defined temporally as those assessments and interventions that occur after diagnosis but before acute treatment begins…”
“I have remained in complete remission through a combination of nutrition, supplementation, lifestyle and mind-body therapies. Anti-angiogenic (anti-Myeloma) nutrition runs throughout these themes…”
“Nonetheless, MM patients successively relapse after one or more treatment regimens or become refractory, mostly due to drug resistance. This review focuses on the main drugs used in MM treatment and on causes of drug resistance, including cytogenetic, genetic and epigenetic alterations, abnormal drug transport and metabolism, dysregulation of apoptosis, autophagy activation and other intracellular signaling pathways, the presence of cancer stem cells, and the tumor microenvironment…
Furthermore, we highlight the areas that need to be further clarified in an attempt to identify novel therapeutic targets to counteract drug resistance in MM patients…”
