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What Should I Do Now That My Multiple Myeloma Has Returned?

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What Should I Do Now That My Multiple Myeloma Has Returned?

Yesterday I began to explore and share the short term therapy options for my returning (refractory) multiple myeloma. Summing things up I wrote: “To use a military analogy, all myeloma patients are all fighting a delaying action. We are stalling—holding off the enemy for as long as we can until reinforcements arrive.”

I also wrote how “every long term mm survivor I had interviewed over the past few years recommended following the same approach—stick with the last treatment that worked as long as you possibly can. Why? Because there is no guarantee the next therapy you try will work as well—if at all. And because squeezing the last few months, weeks or days out of each treatment is how one year turns into two, then three, then five and then ten.”

So what are my next best options? First, taking a page from all of those long-lived myeloma patients—keep doing what I’m doing! Revlimid has worked so well for me up to now, it only makes sense to stay with this drug. Upping the dose and/or dosing frequency is worth a try. If and when that doesn’t work, Velcade is the next logical step—or possibly using both Revlimid and Velcade together—and then adding dexamethasone. I might also consider one or more clinical studies available to refractory multiple myeloma patients. One uses vorinostat. Another pomalidomide. Still another uses Onyx’s new wonder-drug, carfilzomib. I may not qualify for any of these at this point—or one of these appropriate studies may not be available through Moffitt Cancer Center here in Tampa. I will need to research this. Speaking of Moffitt, my new myeloma doc there, Doctor Melissa Alsina, is concerned using Velcade might speed the progression of my neuropathy (PN). She suggests a stem cell transplant (SCT) before my PN gets any worse. Sound advice, but why not try Velcade to see? Of course a SCT is always an option That’s why Pattie and I visited the American Cancer Society’s Hope Lodge on Thursday. (It’s a great looking place… Hope I qualify to stay if and when I decide to proceed with my SCT)

There are two reasons I want to delay my SCT for now. First, I have so much to do! There are several fast approaching medical conferences I need to cover. I want to finish the second edition of my first book, Living with Multiple Myeloma—and I am almost finished with the first draft of my second book as well. Excuses, I know! My second reason is more sound: Since therapies which worked for a while before a SCT tend to also work again afterwards, theoretically a myeloma patient can buy themselves some more time by staying on these therapies as long as possible before transplantation.

Hey, at least I (and most of you!) have options! Emotionally, I am doing much better the past few days. I am back to my logical, clinical self! I will get another M-spike done in a few weeks, meet with Dr. Alsina, contact my former docs at Mayo and Osceola Medical Center—making sure they concur—and get started on round two of me vs myeloma!

Feel good and keep smiling—and thank you for all of your kind words and e-mails! Pat