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Myeloma In Paradise: Taking A Vacation From Multiple Myeloma
By: Tom Shell; Published: May 11, 2016 @ 10:07 am | Comments Disabled
I just returned from a long trip to Europe, and boy do I feel refreshed! The reason I think I feel so good is that I took a holiday not just from work and the mundane problems of home, but I also took a holiday from my multiple myeloma.
I once again find myself feeling guilty for being one of the healthiest guys in the myeloma ward, so let me explain.
My wife and I spent about three weeks in Switzerland and Italy without the kids. It was a great trip. I took this trip as an opportunity to take a break from my maintenance therapy. That made it an awesome trip!
I have been on maintenance therapy of Revlimid [1] (lenalidomide) and methylprednisolone ever since undergoing initial treatment with Velcade [2] (bortezomib), Revlimid, and dexamethasone in 2013 (my cancer load dropped sufficiently with initial treatment that I did not have a stem cell transplant).
Not to sound ungrateful as I know how fortunate I am to still be symptom free, but being on maintenance therapy leaves a lot to be desired! The grind of the monthly chemo fog has gotten old, to say nothing of the gastrointestinal delights that I experience.
I have been responding well to the maintenance therapy, so I have kept on it. My free light chains seem to bounce around at barely tolerable levels, but my IgG and M-protein continue to be at acceptable levels. In consultation with my oncologist, I take breaks once in a while from my treatment. Typically for only one cycle, or one month, and usually I try to coordinate them with a vacation or significant event that I don’t want to feel sick for.
I pay particular attention to how my body responds to these treatment holidays and can conclude that, after three years of taking treatment holidays every now and then, I seem to bounce back every time. After my treatment holiday, my free light chains are usually higher, but they recover pretty quickly and return to my “normal” range.
At least equally important, though, is how much these treatment holidays help me mentally. In fact, they help me A LOT. I get to remember what it feels like to feel normal again, even if it’s only for a week or two. I say only a week or two, because it takes a good two weeks to clean out the lingering effects of treatment before I notice the improvement.
During this most recent treatment holiday, I was able to push myself to go skiing in the Swiss Alps for the first time. I had some trepidation about hitting the 12,000 foot high ski runs, but once the adrenaline started flowing, my body remembered what to do. My stamina was pretty limited and my knees hurt for days afterwards, but boy was it fun!
The boost in confidence and overall well-being that pushing myself to that level gave me was invaluable. I wasn’t sure that it was good idea for a 53-year old, out-of-shape cancer patient to actually ski the Alps, but the glow I felt then and continue to feel now tells me I did the right thing. You absolutely cannot believe how stunningly beautiful the Matterhorn is in real life!
Now you might be asking yourself: Why would I take these risks?
Taking a break from Revlimid treatment is not recommended by my myeloma specialist because it could shorten the time that this medicine will continue to work for me. I understand.
Skiing down a mountain on my broken down body is certainly not recommended by any sane physician because I could end up with lots of broken things. I understand.
What science is unable to account for, though, is what a treatment holiday does for me, the individual. It is impossible to run double blind studies on those who take three breaks a year from treatment versus those who take one. You can’t measure whether it is more beneficial to go skiing or to read a good book.
The effects of how much being happy extends our lives cannot be measured. They can only be measured by us. It is different for each of us. For me, I attribute being happy to why my body is holding its own (for now) in this fight. Anecdotally, I see this phenomenon in other cancer patients I know as well.
Being happy, whatever that means to you, seems to often help one’s health.
I know I could be wrong about taking breaks from my Revlimid. I know it could lead to my cancer adapting to it. But I also know that these things can (and probably will) happen anyway.
So for me the decision is to enjoy these fabulous little windows into normalcy so much that they outweigh any lost treatment effectiveness. I don’t want to shorten my time left with my wife and boys, but I certainly don’t want them to get the message that once you’ve been dealt some bad cards in life you have to just fold your hand and wait for death.
My favorite treatment currently is to lay down exhausted from too much skiing, too much good wine, and too much fresh pasta.
All that said, I also need to add that for now my vacation is over. I am back on my Revlimid and methylprednisolone.
This too is part of my life now. I accept that these drugs are helping to keep me alive. But I sure am looking forward to the next vacation!
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here [3].
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URLs in this post:
[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[2] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[3] here: https://myelomabeacon.org/author/tom-shell/
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