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My MM journey began in 2006. Tumors @ T-11 & L2, multiple back surgeries @MDAnderson, followed by autologous stem cell transplants in 2007 & 2017. Velcade Maint. shots from 2017 to 2021. Currently on Revlamid 15 mg, dex. & bi-weekly empliciti IV. Now that rev. has gone generic, my insurance co. will only pay generic. I’ve fought MM battle for 16 yrs, have exhausted all stem cell transplants & must rely on chemo.. Any input/info. is appreciated as it looks like this 65 yr old grandmother must now do some of my own research for alternatives. Can’t help but be frustrated with big pharma right now…Reply
First and foremost Anita, you must know that are an exemplary MM survivor. Congratulations on your 16 year survival thus far. I’m guessing of course but I believe that you:
Were stage II or stage III at diagnosis? I say this because of your bone involvement at diagnosis.
Proof that autologous stem cell transplantation can increase overall survival aka OS.
Proof that low-dose maintenance therapy can increase OS as well- both velcade and bortezomib in your case.
To clarify your treatment history, your induction therapy and first ASCT stabilized you and you reached remission and stopped all therapy in ’06,’07? You enjoyed a remission until 2016-17 when you underwent a second ASCT?
After your second ASCT, you added low-dose Velcade as maintenance therapy? And you remained in remission until 2021? At some point last year (2021) you decided to switch from Velcade maintenance to Expliciti , Revlimid, dex.?
In my experience, your therapies going forward will depend on your MM having become refractory to a previous therapy. This is obvious, I know, I’m just laying a base…
In theory, your mm is refractory to protease inhibitors (velcade) and immunomodulatory drugs (revlimid). Ask your onc. if you are refractory to these two classes of chemo. The link below is to info about Panobinostat combined with Velcade.
Another possibility is Daratumumab aka darzelex. Though this drug is similar to empliciti, it seems as if this therapy is different enough that it may be worth a try.
Finally, and this therapy may have already been discussed, you can try CAR-T therapy. If you have the option, I would hold off CAR-T therapy as long as possible only because oncology seems to be improving this therapy regularly.
Those are conventional therapy options.
Evidence-based but non-conventional therapies would be treatments that are not FDA approved- I have read studies that cite several integrative therapies- this would be curcumin, thymoquinone, etc. enhancing the efficacy of protease inhibitors.
Further, therapies such as antineoplaston therapy, insulin-potentiation therapy, etc. Therapies that don’t have the support of studies/research and are therefore difficult for the patient (you) to assess.
I’m mentioning therapies that are not FDA approved simply to give you an idea of what is out there.
I have thrown many ideas at you. Let me know if you have any questions.
Hang in there,
I found out about you through reading about a lawsuit you had against Ohio medical insurance company. My mother in law was recently diagnosed with MM. I was looking for your insight on the antineoplaston therapy.Reply
I am sorry to learn of your MIL’s MM diagnosis. I wrote an extensive blog post about this issue as this question comes up a lot. I
will link the post below. Because I have researched and use a spectrum of evidence-based non-conventional therapies like ANP, I encourage your
MIL to register for the MM Cancer Coaching Program- both the course and consultation.
Let me know if you have any questions.
I was diagnosed 1yr ago with MM. I responded remarkably well to my treatments and as of Feb am in remission. I have a great deal of confidence in my oncologist and how he has handled my journey with one exception. My diagnosis was do to a broken rib and it was discovered that I had a large tumor on my spine and a number of smaller ones all over my body. Consequently I had a great deal of pain in the beginning. It took a bit to get it under control do to my reluctance to using opioids. In the end I ended up on morphine. I only take 15mg extended release every 12 hrs. I have approached him several times about getting off the morphine but he is extremely reluctant to do that but I can’t understand why. I realize everyone’s pain tolerance is different but since you have dealt with this for so long what have you used for pain management. I have read several of the CBD articles and I don’t get a feeling that you are entirely sold on that as a pain management replacement for narcotics. Can you help me find a replacement for morphine. My oncologist tells me it’s a very small dosage and he feels like I should remain on it. I’m concerned about long term use. I know I’m not promised 20 yrs or even two for that matter but I don’t want to find myself down the road even 5 yrs on 50mg of morphine because we have to keep upping the dosage because of the amount of time I’ve been on it. I appreciate any input you might have for me. Thank youReply