Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission
Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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SMM is now Multiple Myeloma- Fatigue, Fear, Depression, Help!
Although not in a true remission, I have been successful in coexisting with myeloma for almost 12 years now…”
Hi David- I was diagnosed with smoldering multiple myeloma (SMM) two years ago. It is now become active multiple myeloma. I can barely walk across the room without being out of breath.
I had a PET scan done last Friday. We’ll find out the results from my oncologist on Monday.
I Just wanted to know how you handled the depression, and fear. What treatments you found helpful, and useful to serve. And did you get stem cell transplants or did you do some of the other therapies like I said I’m new to all this thank you for your time- Louise
Hi Louise,
I am sorry to read of your SMM progressing to frank MM. My guess is that your shortness of breath is a result of low red blood cells. Your red blood cells (hemoglobin) are reduced because your MM is growing crowding out the RBC’s. Fewer RBCs means less oxygen is absorbed aka shortness of breath.
This is the most common symptom of MM. That’s the bad news.
The good news is that you are early stage MM. Early stage means that you have a host of therapy options that are not available to MM patients with advanced disease. Other possible symptoms are
- bone involvement,
- kidney involvement and
- thick or viscous blood.
Regarding your question “Just wanted to know how you handled the depression, and fear” I have three replies.
First and foremost, MM diagnosed at an early stage is a different animal that what you will learn about from your oncologist. This is a result of MM statistics. 95% of MM patients are diagnosed at stage 2 or 3. So when you are told that the average life expectancy of a MM patient is 5-7 years, it doesn’t apply to you.
Right off the bat consider:
- Prehabilitation
- MM specialists
- Complementary/Integrative therapies
Secondly, I will link a study that explains prehabilitation and cancer.
Thirdly, I do think that mind-body therapies are useful for us MM patients living with MM for years. I will link a blog post below about mind-body therapies that are important to my survival (and all MM patients survival).
I do not mean to sound as though I am minimizing your diagnosis. Yes, MM is an serious, complicated, incurable disease. However, the past 26 years has taught me that conventional oncologist is only a piece of the MM puzzle. I will link a post about the importance of consulting with a MM specialist below.
Regarding your second question “ What treatments you found helpful, and useful to serve.” The third blog post linked below talks about a MM patient who is doing well following a “low-dose” therapy plan. While this is a large and complicated subject (the FDA, standard-of-care MM therapies, etc. etc.), the point I want to make is that you
should consider therapy plans that you oncologist may not talk about.
Which is my segue into your third question “And did you get stem cell transplants or did you do some of the other therapies..?” I did both an autologous stem cell transplant and “some of the other therapies…”
I had an ASCT in 12/95, and relapsed 10 months later. I underwent more radiation, remission, relapse and “there is nothing more we can do for you…” That sentence still rings in my head…
Autologous stem cell transplantation may have a place in a therapy plan for a MM with advanced disease. As I’ve said, this is not you. Yes, harvest your stem cells after you have
- prehabilitated
- undergone a little chemo, manageable toxicity
- begun evidence-based complimentary and integrative therapies
And if you do all the above therapies then we can discuss the pros and cons of ASCT.
My point is that conventional MM therapies is only a small piece of the MM picture. The gentlemen in the post below has not followed standard-of-care MM practices and is doing remarkably well.
As I say Louise, I got carried away with this reply. I hope it helps. Let me know if you have any questions.
Thanks
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Surviving Multiple Myeloma- Coping w/ Fear of Relapse
- Multiple Myeloma in the Elderly- Minimize Toxicity-Increase Non-Toxic Therapies
- Multiple Myeloma Chemotherapy, Allergy, Hypersensitivity, Side Effects?
Multiple Myeloma-10 Mind-Body Cancer Therapies Better than Chemo-
“I have come to believe that my mental health is just as important as my physical health in managing my multiple myeloma. The links below show the studies that cite how important mind-body therapies are to MM patients and survivors.
I understand that mind-body therapies don’t get much respect when it comes to a MM diagnosis. All I am saying is that the mind-body therapies below are complementary therapies to be added into your regimen and that they are what I have been doing for years now…”
Cancer Prehabilitation for Patients Starting from Active Treatment to Surveillance
“The purpose of this brief summary is to introduce the concept of cancer prehabilitation and the role of oncology nurses in prehabilitation care. Cancer prehabilitation has been defined by Sliver and Baima (2013) as “a process on the cancer continuum of care that occurs between the time of cancer diagnosis and the beginning of acute treatment.”
The evidence supports the notion that prehabilitation programs can improve physical and psychological health outcomes and decrease overall health care costs. The care model for cancer prehabilitation should include timely and efficient assessment throughout the care continuum with a focus on improving outcomes in cancer at every stage…”
Multiple Myeloma Specialists- Why?
“You’ve been diagnosed with incurable cancer. You’re trying to manage your emotions and perhaps the emotions of those closest to you. Going to a hematologist/oncologist seems like the best thing to do, right? Studies show that hematologists/oncologists who specialize in multiple myeloma provide much better overall survival statistics than non-specialists….”
Long-Term Multiple Myeloma Survival- The Keys To Success-
“Furthermore, gene analysis studies show that curcumin enhances the cytotoxic effect of lenalidomide via suppression of the cereblon and multi-drug resistant genes.”
Although not in a true remission, I have been successful in coexisting with myeloma for almost 12 years now…”