In January, I met with Dr. M. Once again, my cancer showed signs of awakening. I feel good. I am not overtly symptomatic. Nevertheless, the myeloma stretched and yawned. After a nearly 2 1/2-year nap, my drug-free remission was about to end.
Since last October, we’ve discussed a course of action. I digested statistics from clinical trial findings. The doctor weighed in with his experience. Opinions from several other respected sources aided me in my deliberations. Finally, I assessed my own treatment history. No doubt, the chemo I received in 2008 altered the environment of my bone marrow. Those drugs subdued the disease. Over time, though, the cancer adapted and the surviving cells began to grow.
During the intervening months while thinking about what to do, MM claimed the lives of two members of my support group and an online acquaintance. That, coupled with the undeniable activity of my disease, broke the resolve to withhold treatment. I agreed to begin a maintenance therapy of 10mg of revlimid daily, three weeks on, one week off … indefinitely.
My rationale is a gut decision as much as it is about the clinical findings. Stable disease lulls one into complacency. This creates a Hamlet-like dilemma for the patient. Do you strike out at the cancer, or wait? No matter what you decide, it’s a coin toss with your life in the balance. Heads or tails; make the call.
Elsewhere, life goes on indifferent to my stewing over the choices. Winter arrived with enthusiasm. Ski resorts opened early. The season’s frigid momentum persisted through the holidays, clenching the long nights in an icy grip. Then, with New Year’s arrival, its hold loosened when the rains of El Niño drenched the western states.
At home, our modest sized Hood River, swollen to flood stage, growled with boulders tumbling downstream. Pear farmers renewed the premiums on their crop insurance as the thawing ground awakened the roots of trees accustomed to dormancy.
Dormancy, as blood cancer patients and farmers know, is a good thing. Temporary inactivity helps plants rest and rejuvenate. Nature’s balance depends on a period of suspended animation that unleashes itself in a nurturing climate. Too early, and the plant is vulnerable; too late and it may not mature.
Cancer, on the other hand, is more about co-existence with a situation that is out of balance. A patient, such as I, attempts to stay one step ahead. If eliminating the disease is unlikely, then perhaps suppressing it can moderate the ill effects. With luck, a durable remission is possible. In fact, given the dynamics of research into multiple myeloma, surviving until new treatments become available is a reasonable strategy.
Am I convinced about my decision? No. But I feel fortunate to have choices. The dirty little secret about revlimid is that a 21-day supply of this miraculous drug can cost over $10,000.00. That is not a misprint. Obviously, I don’t pay that. I have health insurance that happens to cover the drug. But for those that don’t, the choices about their cancer treatment are much more difficult than mine.
Good Blood, Bad Blood 
For what it’s worth, I had excellent results with low-dose oral Cytoxan (100mg/day). The only side effects were minor, such as thinning of the fingernails and dryer skin. The advantage is that it put me into long remissions several times. Also, it is possible to harvest stem cells after Cytoxan. I collected my cells early, and stored them (1998). My auto SCT in 2005 gave me 2.5 years CR after five years of delay with oral Cytoxan.
It is my belief that if I had had the SCT early, I wouldn’t be here now. The risk, though, in delay, is that when the time comes you might not be eligible.
I do like the idea of saving drugs that generally do not produce drug-free remissiosn until they prove to be necessary.
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John,
My husband and I enjoy your writing, photos and perspective. It truly is all about choices isn’t it? We do the best we can to be educated on the research and then step out in faith that we are making the right decisions along with our medical team. EZ began 10 mg Revlimid maintenance therapy last month, 5 months post transplant, on the advice of his oncologists. He wrote about it on our blog. Blessings to you as the journey continues.
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Thanks for sharing. I just love your writing style. Even when writing about a subject as scary as this, I want to hunker down and read it again as if it is a favourite book.
As you know, I have been on REV maintenance for 22 cycles now. My decision will come soon – whether to exceed the 2 year mark given the recent French Study results. I will let the dust settle before walking down that path.
You have my e-mail, so if you have any questions about the supplements that I use to mitigate some of the side effects I would be happy to share. Better yet – if you do get side effects, seeing a good ND with MM experience may be helpful. I find that I have no PN and really my only major side effect is that I’m often very tired. I need to work on that, but maybe as I exercise more it will improve.
For me, given the aggressive nature of my sneaky MM this was the choice I made so that I could buy time for new meds to be approved in case it was needed. So far so good.
But I admit to also doing lots of veggie juices, yoga, walking, saunas, and of course I am working up to 8 g Curcumin and following Margaret’s advice when possible.
Good luck, and don’t hesitate to contact me for anything.
hannaO
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John, I read your post yesterday, but didn’t know what to say. You seem to know and understand everything so well.
You are a brave man. Your words give me hope that this world is a good place.
I am thinking of you and wish you all that is best.
Liliana
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I imagine you know the news about Revlimid and the risk, albeit not huge, of developing secondary cancers… See, e.g.: http://www.myelomabeacon.com/news/2011/02/05/revlimid-lenalidomide-cancer-controversy-flares/
Well, I know that you will follow Spanky’s wise advice and trust your instincts, John, but I can’t help but worry…Take care! (I know you will…:-))
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John,
All good thoughts are with you in your decision. If you are at all interested, my mom is seeing a renowned Chinese medical doctor in Portland, and he is very optimistic about the possibility of reversing MM. She has been going to him for a little over a month, at this point, so she hasn’t had any hard numbers to compare with, but we will see how it plays out. I can give you his info if so.
Jessica
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I cannot say more than any of the other well wishers only that I continue with my prayers and send all very best wishes during this time of choices. Revlimid is a good drug except for those with kidney problems and for you John, a small maintenance amount does seem the best option at this time. Your photos are lovely as always.
Stay strong and well.
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Sending love to you and Marilyn. I have been wondering how you are doing–nice to have an update.
B~
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Your quiet courage always amazes me, John. God’s love shines on you!
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A word of support here, John.
Thanks for sharing your journey. You are a brave man, as someone else alluded to.
Take care, Matt
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Treatment paths for MM is a lot of instinct. Even with data, science, studies, medical opinions, it still boils down to what feels right and makes sense to you. Good luck with everything and let’s hope the beast can be coaxed back into a good long hibernation. You can put PN into my blog search window and perhaps find some options that might work to help minimize it.
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