CureTalk interview with Nick continues…(click here for Part 1).
Me: What is your opinion on Kyprolis/Carfilzomib FDA approval?
Nick: It is an important development, both for me and for those who pursue less aggressive treatment. In the case of the latter group, their disease will almost certainly become resistant / refractory to other modes of treatment and if they live long enough, they will reach a point where the disease no longer responds to anything. There is a critical need for continued drug development to extend the lives of these patients. Some have pooh-poohed the fact and that it might only extend life by a few months. When you’re looking at death, a few months could be the difference between saying goodbye and not, between preparing a spouse to deal with finances or not, between seeing a child graduate college or not, etc. Don’t trivialize even a few more months of life.
Meanwhile, for myself, in the slight chance (the data shows less than 5%) that I relapse; I have used a lot of the available arsenal up in my primary treatment. So I, too, would likely benefit from future drug development.
There has been some hand-wringing about cardiac episodes related to Carfilzomib. Let me be blunt: the primary side effect of untreated Myeloma is DEATH. I would not suggest that Carfilzomib be first line therapy – and I don’t think many are suggesting that – however when one has exhausted other drugs, and one is looking at the chance of a heart attack versus the certainty of death from advancing Myeloma, it’s a pretty easy choice.
I am unabashedly in favor of “big pharma.” Big pharma has kept me alive. Big pharma – and the profits that they make from their drugs – are what has kept me and thousands if not tens of thousands of others with Myeloma alive. I hope they make a huge pile of money and are motivated to make other drugs as well.
Me: Most people suffering from multiple myeloma are skeptical about transplants. You have had a couple, what was your mantra to combat and survive?
Nick: I think, if the first sentence is true, this is a pretty sad thing.
I do maintain a blog, and in that blog, I have taken care not to pass judgment on people’s treatment decisions that might differ from my own. I think humility and respect demand that approach. However, in responding to this question, I’m going to abandon that in the interest of potentially helping some readers. I’m going to take a controversial approach…here goes:
I believe that tandem autologous transplants can cure the majority of newly diagnosed patients, when administered as part of a therapy protocol with cure as its goal. I believe doctors that do not share this theory with patients – even if they don’t agree with it – are doing these patients a HUGE disservice. The data is out there and I have yet to hear a satisfactory answer as to why people don’t embrace it. I do feel that in the next few years it will be commonly accepted.
Consider the following:
When I was diagnosed (October 2008) nobody used Velcade in up-front therapy, except my doctor. Now, it is essentially the standard of care.
When I was diagnosed, nobody used Revlimid in up-front therapy, except my doctor. Now, it is essentially the standard of care.
When I was diagnosed, people didn’t believe maintenance therapy made a difference, except my doctor. Now, it is essentially the standard of care.
When I was diagnosed, only my doctor believed tandem transplants were likely curative…we’ll see how this one turns out but his record is good enough for me.
If one believes, as all seem to do, that without transplants the disease will eventually come back – and if one believes that with transplants there is a good chance it won’t, which fewer believe – it becomes a very simple decision for a young, otherwise healthy patient to get a transplant. And by young, I mean 75 and younger. Anybody for whom 5-10 years of remaining life isn’t long enough. At 80 years old, I might have been prepared to have five good years and call it a life. At 40, I had a lot left to do.
So, my mantra to survive was to get the transplants! : )
As far as dealing with them, honestly it’s not that big a deal. Anybody who is facing death and is worried about losing their hair or two weeks of diarrhea isn’t being honest with themselves about where this disease leads. I am not suggesting transplants are fun: you wouldn’t do them if you didn’t have to. But if you want to beat the disease, you have to. Simple as that.
I’m also not suggesting that anybody pursue a transplant until one is ready to be treated. People who have smoldering myeloma can live for years without needing active treatment.
When one is ready, if one is at the right age, I strongly believe (obviously) that the tandem transplant route is the way to go. My doctor sees more Myeloma than any other doctor in the world. He is not some crazy outlier with a clinic who treats 20 patients a year. His clinic sees 20 new patients every week.
When one goes through the transplant, the mantra is: in two weeks, I’ll feel fine, and no matter how bad I feel, the cancer is getting it worse. A transplant is not open-heart surgery. You are tired for two weeks and there’s nothing you can do. You will have diarrhea, and can take (or not, depending on your tolerance) Imodium for it. You may have mouth sores, which are pretty awful from what I understand but chewing ice during the administration of the transplant chemo appears to mitigate their appearance somewhat. You will probably not have any nausea. Everybody is different but I suspect about 80% of transplant recipients breeze through it. I took 17 days to recover from my first transplant and 14 days to recover from the second. I was on an airplane 16 days after my second transplant. Again: this is not open-heart surgery.
There will come a time – hopefully soon – when transplants will not be necessary for a cure. Until we are there, they remain the best hope for long-term survival, with or without an actual cure.
Me: What would you like to tell our readers about fighting myeloma and living a normal life?
Nick: Mostly, that it is possible.
Part of the reason I started a blog is because the only reading materials I could find were about how your life would be irrevocably changed, you’ll measure your birth date from the day of your transplant, blah blah blah.
My life is 85% back to normal. I work, I eat, I drink wine, I play golf, I do all the things I did before I was diagnosed, essentially, albeit with a bit less energy that I’d like but that doesn’t slow me down too much. I have a few side effects from my meds. I deal with them – every time I feel sorry for myself that I’ve gained 15 pounds or have stomach cramps once or twice a week or am tuckered out by 9PM on a Friday, I remind myself that I could be DEAD. I’m lucky I was diagnosed the way I was, I’m lucky I had a generally “low risk” type of the disease (about 85% of newly diagnosed patients will have this, the other 15% are not as fortunate and for them, the outlook is sadly still quite dire). I’m lucky I responded to therapy. I am lucky in so many ways.
In addition, that, perhaps, is the one way your life will change: you will, if you are open to it, become a little more appreciative, a little more patient, and a little more focused on enjoying each day. Not living each day like it is your last, because that is surrendering to the disease and robs you of the many pleasures of planning for the future. But finding at least one thing in each day to enjoy – a conversation with an old friend, a dialogue with a new patient, dinner with a spouse or a child, engaging in a favored hobby, etc. For the healthy and the ill, it is just like Ferris Bueller said: life moves pretty fast…if you don’t stop and look around once in a while, you could miss it. : )
This has been a wonderful and insightful interview and I am sure it would benefit many multiple myeloma patients. Thank you Nick for your time and your words.
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- CureTalk Interview With Pat Killingsworth, Author And Multiple Myeloma Survivor
- Stem Cell Transplants For Older Patients