Myeloma In Paradise: Taking A Vacation From Multiple Myeloma
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 (lenalidomide) and methylprednisolone ever since undergoing initial treatment with Velcade (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.
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You are a star, sir (that's a very British expression). It is about living, and the Alps are stunning, and you are blessed by the ability to escape. I wish my Sheila could escape the constant daily fear of myeloma as you have done. I plan to take her to Nice again to enjoy a) the old town b) the "smellies," like Fragonard at Grasse (perfumeries for those not acquainted with crazy Canadian-Brit humour) c) the "arties" at St Paul de Vence and d) the view at Eze whilst having a glass of wine looking down at the billionaires' houses (millionaires cannot afford them).
Great attitude. I think we have to have balance in our lives. I'm not yet where you are on this journey, but I hope to be one day, and I hope I approach it with your attitude. While I know I will need to make adjustments in what I do in the future, I don't want to "stop living" so that I might "live longer."
Tom,
Great article, I totally understand about the gastrointestinal delights, I just try to watch what I eat and drink and other times I say the heck with it and enjoy my favorite foods, most of the times it's fine little to no issues.
I haven't taken a Revlimid vacation, coming up on my 3rd anniversary, aka birthday, of my stem cell transplant. I feel very lucky that I can do everything I did before discovering I had multiple myeloma. I cut my own grass weekly with a self propelled lawn mow, still wash my own car, help my wife with the house work, and try and take walks as much as I can. High humidity days do affect me but they affect most people too.
I loved this column! I am sure the break you took from Revlimid will only serve to help, not harm you.
After my stem cell transplant, my doctor wanted me to take a reduced dosage of Revlimid, Velcade, dexamethasone (RVD). After about 6 months on this regimen, I landed in the hospital with really severe muscle pain that mimicked a heart attack. Of course I also had all the digestive lovelies, too, even on only 5 mg of Revlimid. After careful consideration, I continued with Velcade and dex (bi-weekly), dropping the Revlimid, even though my doctor offered to have me off all maintenance, since I was in stringent complete response (sCR). But, I was reluctant to do that since I have one of the high-risk abnormalities (addition of chromosome 1). It was definitely the Revlimid that was causing most of the problems.
It's never easy. I find the Velcade/dex much, much easier to tolerate. If the Revlimid is making your life difficult, could you switch over to Velcade? It made all the difference for me. Of course you have to get to the doctor a couple of times per month, but I would gladly trade that for a better quality of life.
Always enjoy your columns! L'chaim! ("to life!" in Hebrew)
Aloha Miles - You are too kind. I do not feel like a star, just a guy trying to do the best I can to live my life. I am blessed compared to the other folks here who are suffering. I am not advocating skiing for anybody else, only that they live their lives as fully as they can. Sounds like your trip for your Sheila is right up that alley.
Aloha Mark - I think just consciously knowing that you want to keep going after an enjoyable life is the biggest hurdle to getting there. It can be so discouraging to keep getting bad news on the health front – it's really hard for all of us (me included) to keep our chins up. Just keep trying.
Aloha Jack - Sounds like you are in a similar boat to myself. Glad you can stay active and enjoy the things you want. I too try to watch what I eat. I find that I can tolerate a beer or two early in my cycle, but towards the end I need to avoid all alcohol and watch the high fat foods. Maybe some cool lemonade for those high humidity days (we get lots of those also).
Aloha Ellen - I'm very glad you liked it. I agree that Revlimid is the bad actor in my regimen. Unfortunately, my body doesn't like Velcade even more. I stayed on the steroid this last "vacation" and it didn't seem to bother me at all. It also may have helped to keep my free light chains from spiking too much. L'chaim to you as well!
Great article, and I really admire you. When I was diagnosed 5 years ago at age 66, my first response was "Well, there goes retirement and travel!'
However, since then, I worked three more years (at half time) and have traveled to Europe twice, Barbados, and DC, along with a number of trips to see the grandchildren and other family. It wasn't quite skiing the Alps, but the most recent trip was to Poland and the Czech Republic with no knowledge of the language, a bad knee on the cobblestones, and a restricted diet (celiac disease.) I was still off medication after my transplant, looking to go back on soon. It was wonderful. My doctor's attitude was a non-enthusiastic "Well, I guess you have to live your life," which is exactly what I am trying to do.
Hi Tom. I relate to this column, even though I haven't started myeloma treatment yet. I have been "high risk" smoldering since diagnosis in 2009, and "ultra high risk" (aka active myeloma without CRAB symptoms under recent guidelines) for at least the last 3 years. Many patients in my situation have chosen (or been advised by their physician) to start treatment or a clinical trial in the hope of postponing "progression" and extending overall survival. Nevertheless, I have chosen (in consultation with myeloma specialists that I trust) to continue to watch and wait while reducing my work hours (and stress!) and spending as much time as possible focusing on enjoying life.
It has worked so far and I hope this continues for a long time, with the understanding that at some point (possibly soon) I may need to start treatment. In the meantime, I travel frequently and actually am planning a trip this summer that will include the Swiss and Italian Alps.
It's so nice to know that despite treatment side effects you have managed to take breaks and experience quality of life along with the added quantity that the treatments provide. Here's to many more good times for all of us.
Tom, just wanted to send a THANK YOU your way for the wonderful article.
I too am a multiple myeloma patient and understand fully all that you talked about. Your article has encouraged me to make every effort to try and do something special with my family. Now I just need to figure out what!
I was diagnosed Christmas of 2009. Since then, I've undergone Velcade, Revlimid with dex, and Pomalyst with dex, and I'm now on Pomalyst, Kyprolis, and dex. I completed a second stem cell transplant this past July. I know what you mean about the "chemo fog" and the gastrointestinal issues. LOL
I think I've been fortunate with a good oncologist. We have an open line of communication, and I've never felt that my best interests were not being considered.
Again, thanks for the wonderful article.
Such a timely topic for me! Just yesterday I was bemoaning not feeling like myself, as I start my 6th RVd induction cycle. The first few were a breeze, but now I'm having significant fatigue – fatigue that even the dex doesn't cut through adequately.
So, I was wondering: will maintenance keep me in this place, only somewhat less so? Will I ever feel like myself again?
Now, I realize what's wrong with those questions, but I was mourning so thinking them. And a bit sad. Until reading about your vacation!
Awesome.
There are so many ways to craft our lives while living with this disease, and I suspect I'll be inclined to rip a page from your book one day down the road.
Thanks.
This was an awesome article. Good for you! I cannot wait to "recover" and get my energy back. Mentally I am there, but my body just doesn't want to cooperate just yet. Running out of patience but so happy to hear multiple myeloma patients doing what I anticipate doing soon!
This is awesome. I am a 4-year remission statistic. I crave the freedom you are talking about here. I am happy for you. The "fog" of the Revlimid is not my ideal "norm".
Hi, Thomas!
Your vacation sounds wonderful. The happiness factor, whatever that is, makes all the difference for each one of us multiple myeloma patients, I think. Thanks for another great column. I always look forward to reading your messages from Paradise.
Tom,
This is an interesting article. I too have been on maintenance but it is Velcade and dex. I don't seem to have any notable fatigue or fog from the Velcade. All of my symptoms seem to derive from the dex. I am curious if the Revlimid is what is causing most of your fog and digestive issues? The methylprednisolone (MP) is less potent than dex (4 mg of MP = 0.75 of dex) and it breaks down faster. So I bet the Revlimid is the issue. What is your dosage?
I have been on maintenance for 7 years. I got off of Revlimid in 2012 and have been on the current protocol since. I may have to go back on Revlimid as my sFLC are showing a slow but steady rise. Thus my question.
I have always been very active and an avid cyclist. I don't recall that the Revlimid caused any additional issues but then I was on 3 drugs so it was hard to differentiate. The dex really winds me up for a day or so and then I come down. That is the one that I have always noticed the most.
Great article I just had my 10th birthday from transplant. Having a wonderful life after transplant. My wife and I have visited 49 states, and numerous foreign countries. We have logged 100,000 miles on one car and 40,000 on the second. Will be starting another road trip the end of the month. The intestinal trials and tribulations from the Revlimid can be a pain when traveling, but you get used to it after awhile. The compromised immune system seems to be my biggest problem when traveling by air. I always wear a mask while on the planes and in airports. Seems like people cannot cover their coughs. As far as the chemo fog, well yeah, I got that too. It seems like we all have the same side effects of the drugs, but life is still great. Love being retired.
What a great column. I smiled all the way through it! Happy trails, Tom!
Tom,
Wonderful article and thank you for sharing your outlook. What a great trip to the Alps! There is truly something to the power of our mind and our attitude to affect an outcome. After my diagnosis and tandem stem cell transplants, we wanted to invest in some family time between careers. I was blessed to reach CR. We put everything in storage and lived on the military pension / disability. We spent 8 months overseas in Europe / Israel, cash flowing everything (read 'watching the budget'!), staying in AirBnBs like a local and worldschooling the kids. I relapsed on the way, we cut the trip a bit short and we returned for me to restart treatment. Now, thank God, back in remission and doing maintenance therapy on carfilzomib (Kyprolis), Revlimid, and dex. I agree with you, now is the time for us all to live this one, precious life we've been given. Thank you for sharing!
Aloha All,
Thank you so much for all the positive feedback. It reminded me why I write - it's to inspire this kind of dialogue.
Judy - Don't worry about your doc's lack of enthusiasm. He is just worried about you and forgets that you can't be as happy in a plastic bubble.
Jason - Way to get a head start on living!
Michael - "Special" is of course different for all of us. We have decided to make "special" times an ongoing goal. For us, it is travel to different activities and adventures. For others it might be something far less physically or financially taxing. Even a simple meal together can be made very special.
Moonscape - For me, the 9 months of RVD was way worse than the maintenance. The dex bothered me the most, so using the methylprednisolone helps a lot. You will feel better. Just try to have patience.
Traci - Your body will catch up. Hang in there!
Janice - If the fog is the norm, see what fun you can make while you have it. For me it comes and goes, so I do less when it is around. I find I can still do most anything though, just for a shorter period of time. My poker and golf buds love it when I play in the fog since they usually win! Even short bursts of fun are better than no fun at all.
Sylvia - You are too kind. I think having a smile is one of the best medicines I have found.
Ron - I am on 10 mg of Revlimid. I really didn't like the dex, that's why I switched to the methylprednisolone. Our plan now is to stay on the Revlimid until it stops working, then go back to the Velcade. Glad to hear about your cycling; keep those wheels turning!
Jim - You are my inspiration! 140,000 miles is awesome! I hope I make it that far both figuratively and literally! Glad to hear you are making lemonade out of these lemons.
April - Thank you! You are one of my inspirations!
Brent - You will never lose that special time with your family. More importantly, they will never lose that time with you. You have also taught your kids a lesson they will pass down to theirs. I'm very happy for you and look forward to hearing about your new adventures.
I would say that chemo vacation did a lot of healing for the soul. Well done.
Nine years since my multiple myeloma diagnosis, one of the very lucky ones. Less than one year total on any treatment. Eight years drug free. I have had two auto transplants, seven years apart. Doctor and I talked about doing maintenance after this one, but I decided against it. Fifteen months post transplant, still CR. I will always take the risk of NOT doing treatment when my numbers are low enough. Not just the side effects of the drugs, but all the time spent doing treatment, labs, and doc visits.
Maybe I am in denial, but for me denial works. Reading about your trip made my day!
Way to go, Tom!
I hope you have many more vacations that are just as much fun.
Tom, I am late replying because I have been on my own vacation from Revlimid and dex, plus Empliciti. I am 5 years post stem cell transplant, and the last 3 years I have been on 4 treatment lines. I still take drug holidays so my husband and I can travel. Just recently we took our pop-up camper and camped across Utah, Nevada, the California coast, and back again for 14 nights and days. I found each day I was so mindful of sights, sounds, and experiences. I store up the memories for when I sit in the cancer center receiving the latest drug. My GI tract also likes the break from Revlimid. Quality of life, I deliberately choose. I have a medical team who may not endorse my breaks but do support my decisions. Your vacation from drugs, lab tests, and hospital visits sounded wonderful. Thanks for the article.
Tom, I really enjoyed this column, and two points in particular resonated. Firstly, I also sometimes feel guilty that I have been doing so well. Secondly, I am starting to wonder about taking a brief break from the Revlimid / dex that I have been on since 2014. My numbers are pretty stable, and it would be really good to be free of GI issues for a while! I mentioned the idea at my last checkup; now, with your example, I will probably push for it next time. I'm not going to go downhill skiing though: anything other than cross-country terrifies me!
Aloha Trevor,
Please be careful about the decision you are making. As we know, everybody's disease is different and I would hate to hear that your health was seriously compromised because of my example.
I see this as a gamble that I take and I take it with the full knowledge that my life could be shortened because of it. Treatment is a very individual decision we all must make for ourselves.
If you do take a vacation, I hope it is the best ever! Good luck on those cross country skis. That is some hard work!
Aloha
Tom