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My mom was just diagnosed with MM. She is on Coumadin. The Dr. wants to do a bone marrow biopsy but the hospital can’t get her blood thick enough. She is home from the hospital with no follow-up, main reason is because she can’t walk anymore, unknown neurological problem. Medicare doesn’t pay for EMS so she can’t follow-up with any Dr. because can’t get her to the vehicle. She is so scared of falling. If she receives no treatment how long will she survive. She already has acute renal failure, anemia, vitamin B12 defecency.
ReplyHi Linda-
I am sorry to learn of your mom’s situation. I will assume that your mom is on Coumadin due to heart issues (like my folks…). Without more specifics is difficult for me to estimate how she will survive without treatment. Although I have to say that toxicity might not be good for your mom right now. For instance, is sounds like your mom is not a candidate for a stem cell transplant.
The only thing I can think of regarding your mom’s inability to get to the doctor or hospital is a service like Lotsa Helping Hands.
I have personal experience with LHH and the computer based caregiver organization (of friends of a cancer patient friend of mine a few years ago) worked extremely well. If your mom has any local family or friends they may be able to help.
The last issue I can suggest (and I don’t know enough about your mom’s MM to know really) is that velcade is a chemotherapy that often reverses kidney failure. Curcumin and omega 3 fatty acids have been studied to increase the efficacy of velcade while reducing it’s toxicity. Consider a lower dose of velcade perhaps.
Let me know if you have any questions or comments. Hang in there.
David Emerson
ReplyDoctor,
I have been treated for MM for about two years. Presently I am on maintenance chemo Velcade for four weeks and then one off. My blood numbers are very good.
Now that my condition is dormant is there any history of how long the disease will stay like this. I am 67 and feel pretty good.
ReplyHi Paul-
Thanks for bestowing a medical degree on me but I have to confess that I am a multiple myeloma survivor just like you. I was first diagnosed in ’94.
I will assume that you are in complete remission. With “very good blood numbers” your are doing well. If you didn’t mention side effects you are doing really well. Maintenance therapy like velcade would be difficult if you were experiencing peripheral neuropathy or some other side effect caused by toxicity.
How long you experience complete remission is anyone’s guess. Even your onc. can’t tell you with any certainty. There are, however, evidence-based therapies explaining how MMers in complete remission can reduce their risks of relapse (MM returning).
I will post and link several articles below for you to read and decide if you would like to pursue antioxidant supplementation to perhaps prolong your remission.
Omega-3 fatty acids (aka fish oil) kills multiple myeloma and enhances Velcade
I will link posts I have written about Omega 3, Resveritrol and Curcumin, what I take, why I take it, etc.
As I mentioned above Paul, I am not a doctor and cannot prescribe medicine. I have read MM accounts of people who’s remissions last one year or ten years. Mine lasted only 10 months, local radiation, another 10 month remission.
I will say that conventional oncology still considers MM to be incurable- we have to think outside the box to achieve lasting remissions. I’ve done so with integrative therapies such as those linked above.
Let me know if you have any questions. Thanks and hang in there.
David Emerson
ReplyHave Myeloma, already had stem cell treatment 2 years ago with the thalidomide treatment. Paraproteins are increasing again. Can you give me more details other than stem cell? Try to eat healthy, stopped biphosphonates 3 months ago due to no quality of life. Started regular walking again and gentle yoga. Feeling reasonably good. Janet
ReplyHi Janet-
I am sorry to read of your mm diagnosis and that you are coming out of remission from your autologus stem cell transplant. However, there are many therapies to discuss beside another stem cell transplant. Both conventional and non-conventional. Also, please continue to eat well, regular walking, gentle yoga. No matter what you do, all of these therapies are great for you.
Most of my blog posts about myeloma focus on taking an “integrative” approach to therapy. Meaning by combining a conventional therapy like Velcade (bortezomib) with non-conventional therapy such as cannabidiol, DCA or curcumin- each blog post linked below will include research studies that explain who, what, when, etc.
Below are links to studies about Velcade enhanced with CBD, DCA, Curcumin, and Resveritrol. All these non-conventional supplements are low-cost and can be purchased through Amazon. Not CBD or DCA but the others.
Cannabidiol (CBD) kills multiple myeloma and enhances Velcade against MM-
DCA, Velcade and multiple myeloma href=”http://www.moloncol.org/article/S1574-7891%2808%2900125-7/abstract” target=”_blank” rel=”nofollow”>
Curcumin in combination with bortezomib synergistically induced apoptosis in human multiple myeloma U266 cells
Resveritrol and Velcade-
What are your thoughts about these integrative therapies?
thanks
David Emerson
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