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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Multiple Myeloma Induction- Reached Remission Early…
“maintenance therapy emerged as an option aiming to extend the duration of the response through continued treatment and thereby improving progression-free survival and overall survival.”
Hi David- I was diagnosed with MM five months ago. I have completed 4 of 6 courses of RVd (revlimid, velcade, dexamethasone) multiple myeloma induction therapy.
I’ve reported side effects to my oncologist and he doesn’t seem concerned, OR he wants to wait to see if it persists.
The side effects that I have experienced are:
- Much noisier tinnitus; so much so that I think it is interfering with my hearing. This has been an effect since I started treatment. I’ve had tinnitus since an accident back in 2011.
- Oncologist said that I’ve had abnormal protein since 2012.
- I’ve reported changes in my vision, my very thinking processes-
- I have a drippy nose,
- Of course there is my balance issue, which I’ve had since 2011, but now is more pronounced to where I have to walk deliberately with my hiking staff ( yeah well, so things are hard to let go of )-
- Of course there is the fatigue, occasional no taste, no smell thing. Basically aging seems to be accelerated during the last almost two years.
I am wondering if chemo or MM could be effecting my brain. I’ve reported a slight pain in my upper arm; feels like the muscle but I don’t know.
Mentally, I’ve changed. I have to nag myself to do things that I used to just do; like getting outdoors, taking a walk, reading ( I used to love ).
The last couple of days, I’ve read more ( books ).
I am now on a 14 day off with my RVd. I guess it’s still 21 on. This schedule is new.
I am in remission ( my summary says ), and my treatment ends in Oct..or so. I’ve missed a Zometa infusion because of the COVID-19 problem. Mon. I decided to go ahead and get my labs and than Wed. my infusion ( 4/6th ).
This island has not ” Reported” cases right now. My infusion nurse has said that if I feel uncomfortable about coming in because of the virus, I can cancel.
I have some gloves and masks and made some that cover below my chin also….just simple no-sew bandanas.
Bottom line; this cancer has changed me mentally and physically; age, I refuse to accept as a cause as far as side effects. Current events don’t help, however. Kate
Hi Kate,
I will reply to your questions/comments below.
1) ” wondering if chemo or MM could be effecting my brain”
Yes, chemotherapy causes chemobrain. Exercise, brain games, curcumin, etc. Discontinuing chemotherapy should improve this side effect.
2) “I have a drippy nose.”
Yes, this is caused by chemo. See if it stops once chemo stops.
3) “Of course there is my balance issue, which I’ve had since 2011, but now is more pronounced to where I have to walk deliberately with my hiking staff ( yeah well, so things are hard to let go of ).”
Consider supplementation with vitamin D. Vitamin D3 is also good for bone health. MM patients are often deficient in vitamin D blood levels. Especially if you live in less sunny parts of the U.S. BTW, I use two hiking staffs…just sayin…
4) “Mentally, I’ve changed. I have to nag myself to do things that I used to just do; like getting outdoors, taking a walk, reading ( I used to love ). The last couple of days, I’ve read more ( books ). Of course there is the fatigue, occasional no taste, no smell thing. Basically aging seems to be accelerated during the last almost two years.”
I’m sure you’ve heard this often but a MM diagnosis, chemotherapy, all of it, is tough on our minds, thinking, moods, etc. It really is. Please read the mind-body therapy guide if you have not already. Again supplementation- curcumin, resveratrol, vitamin D3, etc.
5) “I am in remission (my summary says ),”
If you would like to discuss your being in remission, I would like to. The issue is what your summary means by remission (complete, very good partial, partial, etc.). And more importantly, what will happen if you continue with your further treatment through October (If I read you correctly).
Multiple myeloma induction therapy, especially revlimid, velcade, dexamethasone, is great at ORR aka overall response rates. Most every MM patient “responds” to RVd. You have “responded” to RVd. That’s great.
The downside to RVd induction therapy, or any chemotherapy for that matter, is that it can be a lot of toxicity for the patient. I want to look at your testing, but my guess is that you responded well to RVd and you may be better off discontinuing your RVd.
Do you know your most recent diagnostic levels? What is your m-spike? Free light chains? Can you send me your reports via email?
6) “I’ve missed a Zometa infusion because of the COVID-19 problem. Mon. I decided to go ahead and get my labs and than Wed. my infusion ( 4/6th ). This island has not ” Reported” cases right now. My infusion nurse has said that if I feel uncomfortable about coming in because of the virus, I can cancel.”
Regarding your Zometa infusions. If I understand you, you have had 4 monthly infusions thus far. Studies say that your bones have already deceived a good deal of benefit from the first four infusions. If you walk, take vitamin D, curcumin, etc. your bone health may be fine.
Do you have any bone pain?
My point in all the above is that you may be better off, your MM, your side effects, everything, may be better off if you stop your induction therapy now, after 4 courses of therapy. Your side effects may go away, your energy may return, you will not have to spend any more money on chemo (for now)…
The point of induction therapy (your first four rounds of therapy) is to put you in remission. You have reached remission.
Another treatment option is for you to begin low-dose maintenance therapy- say, 5 mg of revlimid (one capsule a day), much, much less toxicity. Low-dose chemo is designed to lengthen and deepen your remission.
Don’t forget that curcumin, omega-3 fatty acids, other integrative therapies enhance the efficacy of Revlimid…
Let me know if you have your most recent diagnostic testing results.
Hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
Lenalidomide as maintenance for every newly diagnosed patient with multiple myeloma
“In patients with newly diagnosed multiple myeloma, how to maintain the responses achieved after optimal therapeutic strategies was a challenge, and maintenance therapy emerged as an option aiming to extend the duration of the response through continued treatment and thereby improving progression-free survival and overall survival. Because maintenance treatment is administered as continuous therapy, emphasis is placed on the convenience of administration, tolerability, and toxicity…
Metronomic chemotherapy
“Toxic effects and chemoresistance are major hurdles in chemotherapy and to avoid these problems caused by traditional chemotherapeutic regimens, a new modality of drug administration called “metronomic chemotherapy” has emerged.
Such regimen involves the frequent administration of conventional chemotherapeutic agents at very low doses to target activated endothelial cells in tumors, the advantages of which include minimal adverse effects and a rare chance of developing acquired drug resistance.
Previously it was thought that they act by targeting angiogenesis, but recently additional mechanisms have been discovered which has established metronomic chemotherapy as a type of multi-targeted therapy. The knowledge gained from the preclinical studies of metronomic chemotherapy, along with clinical experience, will help to design better therapeutic protocols against cancer…”