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Multiple Myeloma Diagnosis- Reaching Multi-Drug Resistance, End-Stage MM- Help!
“Multiple myeloma, the blood cancer itself, causes bone, kidney, blood and heart damage. Multiple myeloma therapies cause bone, kidney, blood and heart damage.”
Good Afternoon David- I am hoping you can help me with some advice for my 65 yr old Mother with MM. It’s been about 1.5yrs since her diagnosis. She had an autologous stem cell transplant (ASCT) last year and has been on various treatments and now levels are constantly rising. Is she facing multi-drug resistence aka MDR?
Pomalidomide (pomalyst) has now been prescribed, my Mother is not wanting to continue treatment, she has had 2 blood transfusions , cataracts are forming in both eyes and numerous other side effects.
Without treatment specialists predict less than 6 months , we seem to be running out of time (MDR?).
CBD isn’t easily available here in Australia, what would you recommend dosage for black seed oil ? Is this something that can be taken whilst on Pom?
Any advice would be appreciated, Regards Ginny
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Hi Ginny- I will excerpt your comments below in order to break down your situation and reply to your mom’s MDR challenges as best I can.
1) “It’s been about 1.5 yrs since her diagnosis of MM. She had an autologous stem cell transplant (ASCT) last year and has been on various treatments and now levels are constantly rising.” Is she facing multi-drug resistence aka MDR?
Without knowing more about your mom’s treatments, remission and relapses, based on your comments, yes, I believe your mom is approaching multi-drug resistance (MDR). In essence, your mom’s MM is no longer responding to any chemotherapy regimens.
Though all MM patients hope that their treatments result in years of “overall survival,” conventional MM treatments don’t always turn out as we hope. I will link 4 blog posts below that talk about 4 different evidence-based but non-toxic therapies, all that have been shown to integrate with velcade aka bortezomib.
I will continue to speak to your questions but I the only therapy plan that I know of, at this point, is to go back to either velcade or revlimid- low dose combined with integrative therapies.
2) “Pomalidomide has now been prescribed, my Mother is not wanting to continue treatment , she has had 2 blood transfusions , cataracts are forming in both eyes and numerous other side effects.”
My guess is that your mom underwent blood transfusions because of either/or anemia or thrombocytopenia- both are common side effects of chemotherapy. Her blood counts, red, white, platelets are low. She has felt bone-tired since her diagnosis of MM. I can’t blame her.
Re cataracts- I developed cataracts in both eyes shortly after dexamethasone. Common side effect. The good news is that cataracts is a pretty easy fix. I am assuming that Aussie eye doctors are as good as American eye doctors. I had my cataract surgery about 22 years ago. Both of my eyes are doing, have done well.
We can talk more about other side effects. I have lived through many short, long-term and late stage side effects. I think that low dose chemotherapy combined with integrative therapies will be gentle enough on your mom while the therapies help her bone, blood, kidney, heart, etc.
Regarding pomalidomide, I will have to do more research but because Pomalidomide/pomalyst is similar to revlimid/lenadilomide I believe that this chemo will integrate with some/many of the non-toxic therapies listed below.
I am saying that low dose pomalidomide may work as an integrative therapy. Your mom’s oncologist may be more open to pom because your mom has not tried it yet.
3) “CBD isn’t easily available here in Australia, what would you recommend dosage for black seed oil ? Is this something that can be taken whilst on Pom? “
See the links below for what I think should be considered as integrative therapies. Regarding dosing. None of the studies give specific dosing info. They all say “time and dose dependent manner” meaning the more, the longer, the better.
Does your mom have any side effects from chemotherapy? Nerve damage? Kidney damage? Estimating how long a MM has is often impossible to guess. I was told I was end-stage in 7/97.
Let me know if you have any questions.
Hang in there,
David Emerson
MM Survivor
MM Cancer Coach
Director PeopleBeating Cancer
Recommended Reading:
- Multiple Myeloma Chemotherapy, Allergy, Hypersensitivity, Side Effects?
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Multiple Myeloma Chemotherapy- Proteasome Inhibitors
“Bortezomib (velcade), Carfilzomib (kyprolis) and Ixazomib (ninlaro) are all proteasome inhibitors. All three chemotherapy drugs are multiple myeloma chemotherapy regimens approved by the FDA…
While the solution, in my experience anyway, is evidence-based, it is not FDA approved. In other words, the studies linked below explain that
- curcumin
- omega-3 fatty acids
- resveratrol
- thymoquinone (black seed oil) and
- honokiol
Multiple Myeloma Therapy- Curcumin for Both Symptoms, Side Effects
“However, chemotherapy only has a limited success with severe side effects, especially causing damage to normal tissues such as bone marrow, gastrointestine, heart, liver, renal, neuron, and auditory tissues, etc…
In the present article, we review the preventive effect of curcumin against:
- chemotherapy-induced myelosuppression,
- gastrointestinal toxicity,
- cardiotoxicity,
- hepatotoxicity,
- nephrotoxicity,
- neurotoxicity,
- ototoxicity, and
- genotoxicity,
Multiple Myeloma- Symptoms and Side Effects- Omega-3 Therapy
“Multiple myeloma, the blood cancer itself, causes bone, kidney, blood and heart damage. Multiple myeloma therapies cause bone, kidney, blood and heart damage. Most of the time it is impossible for myeloma patients and survivors to tell the difference between damage done by MM symptoms or damage done from MM side effects. Fortunately, omega-3 fatty acids protect against bone, kidney, blood and heart damage whether the damage is caused by the MM itself or the chemotherapy designed to treat your MM…”
Multiple Myeloma Symptoms, Side Effects- Vitamin D3
“When I say that conventional oncology has MM therapy backwards, I’m saying that your oncologist will push chemotherapy before he/she knows your blood levels of vitamin D3. I think it would be quick, easy and cheap for your oncologist to test your blood and prescribe a vitamin D3 supplement if needed…”
Multiple Myeloma- Black Seed Oil, TQ- Kill MM, Pro Bone, Kidney, Heart-
“Our results show that TQ inhibited the proliferation of MM cells irrespective of their sensitivity to doxorubicin, melphalan or bortezomib… Daily dosing with 3% thymoquinone was successful in reducing blood pressure in healthy adults.”