EXERCISING WITH MYELOFIBROSIS A NEW JOURNEY
by Jeremy Smith
It’s been a while since my last MPN LIFE column and my first since learning my Polycythemia Vera had converted to Myelofibrosis this past July. I have learned a great deal about exercising with an MPN over the past twenty-three years and have shared my experiences with you here and on Facebook.
Since being diagnosed with MF I now believe I better understand why many MF patients struggle to exercise more than PV patients do. I have also learned there may be a difference in your exercise results or ability to exercise depending on the drugs you may be on. The impact of spleen size is another huge issue we have not talked about either
I am no longer willing to completely agree with either those who say anyone with an MPN can exercise or those who say it’s impossible. Of course unlike other cancer’s we do not have the multitude of large clinical trials that can be very helpful. Most of our work and discoveries come from the direct results of our sharing information together. Another reason why it’s important to participate in the fatigue study Zhen is working on in partnership with Dr. Mesa.
In many ways we are like the early explorers blazing the trails and uncovering life’s mysteries for those who will follow us decades later. This month’s column will start with me sharing my experiences with you. I hope to follow up with additional articles that focus specifically on what you can do to help keep yourself moving forward whether you have ET, PV or MF.
The two biggest challenges I’ve faced so far are an enlarged spleen and dealing with the mental impact of my new diagnosis. Constantly worried as to how much time I have left my Chi was completely out of whack. I was miserable to be around and drove everyone crazy. I regularly ranted on and on with my darkest thoughts. I even stopped exercising during the first few weeks, a huge mistake.
July 14 2012
I was sitting in my backyard when my iPhone calendar reminder popped up. It said one week to Healdsburg Ride. I had totally forgotten about the ride with everything going on. In one week I had a forty-five mile bike ride through the rolling hills of the beautiful wine country of Healdsburg, CA July 21st and I had not been training for almost three weeks. I began to wonder if I could even complete the ride. I ran into the house and with a panic on my face told my wife the ride was next week. She looked at me and said. “ So what. You don’t think you can do it? Get on your bike right now and find out.”
I changed into my cycling garb, grabbed my bike headed out on my local twenty-six mile training loop.
This loop is a good test as it has an excellent combination of steep and rolling hills to test out my lungs and oxygen capacity. With some long straightaways to see how long I can hold a steady speed of 25 MPH. In the past I use this loop along with indoor spin training to measure my cardiovascular abilities. I highly recommend you create your own loop for cycling, running or walking.
During the ride I noticed one significant change. My enlarged spleen created a huge problem for me when I needed to get out of my seat and push up a steep hill, something that is necessary for riding up hills. I had never experienced this previously so I was not sure what the impact would be on a much longer ride with steeper and much longer hill climbing.
Day of Reckoning
The sound of a hotel phone ringing announcing a 5:15AM wakeup call is never a pleasant experience no matter where you are. Knowing it’s going to hit 100 degrees on the ride today is much worse. I loaded up both my water bottles with HEED and then made breakfast and headed out for the start of the ride.
As I began the ride it’s a beautiful clear sunny morning. There is still plenty of shade. The large hills in the background are a long way off at this point but they await me.
At mile thirty I am starting to get painful cramping as I limp my way in to the last of the sponsored rest stops, where food and beverage is plentiful. I never get cramps when I ride as I eat a constant diet and consume a lot of fluids during rides of more than two hours to keep my system balanced.
At the stop I consume four bananas, a full liter of Gatorade and some peanut butter cookies and head back out on the road. According to my GPS it’s now ninety-three degrees and not a cloud in sight.
At mile forty I am climbing my last hill and completely drenched from perspiration. Pedaling through the cramps is getting difficult now. I have to rest for five minutes. The bananas and Gatorade should have killed any cramps. As I get back on my bike and pedal off I wonder to myself is this how my longer rides will be with MF.
Almost there now I can see the parking lot where my car awaits. 500 feet left to go when my legs seize up from cramps. My shoes are locked in to the clips and the cramps are so bad I cannot move my legs to release my feet from the clips. I know what’s coming next and I attempt to point my bike to the grass alongside the road but we do not make it.
Falling to the ground on a bike while your feet are locked in to clips is never graceful or fun. I try to mentally prepare myself as my right ankles smashes in to the pavement, gashing my right elbow. Thankfully the cramping has stopped. I begin to smile and then laugh as I look up and can see my car in the distance. So close yet so far! I get up and walk the rest of the way to my car and load the bike in the back. I start the car and turn on the air conditioning. I struggled during my ride and welcome the two-hour drive home as I feel victorious in completing it even through my ride time and struggles were awful. I know tomorrow I will awake to a sore body.
BACK TO THE REAL WORLD
After a restful Tylenol- filled Sunday I return to work on Monday. Early on the busyness of my work helps take my mind off of my diagnosis. In the afternoon I receive an email from my doctor’s office with my CBC results. I realize I have become obsessive over my CBC numbers, which are taken weekly now, and I read them like the box score of a completed baseball game. Then I compare them to the past six months of data. I am officially a mental wreck driving myself further down a dark hole over my numbers and recent diagnosis. I wonder if I was this bad when I was first diagnosed with PV. I cannot remember anymore.
Later that week I ask Mary Jo if we could just get the heck out of town and head to Hawaii for a week of relaxation. Requirements:
- A beachfront condo right on the beach.
- Be allowed to skip the normal touristy stuff families like to do.
- All I am going to do is swim, run and relax on the beach.
- No one talks to me about MF.
The condo Mary Jo selected was in the town of Lahaina about a forty-five minute drive from the Airport. For some reason Hawaii is the only place I can truly relax. Don’t even know why but there I can just turn my mind off.
The next morning I head out for a run. As I am running I realize I have a new uninvited friend along for the run. “Hello Mr. Spleen. Why are you here and why won’t you stop poking me while I am running?” I have to cut my run short as I am feeling some pain. I decide to turn my run in to a walk instead. Now Mr. Spleen is quiet.
The next morning I went outside to enjoy the surf and was happy to see large waves pounding the beach. I quickly organized Mary Jo and our kids, grabbing our Boogie Boards and towels and we proceed on to the beach for some body surfing.
I catch some good waves and feel I am 10 years old again on the shores of Cape Cod with my parents and brothers body surfing. An innocent mind captivated by the beauty of the sounds coming from the power of the ocean waves and the warm blue Hawaiian waters.
I see my next wave coming and I start to swim out to meet it for one more glorious ride in to shore. In a quick few seconds I realize this is a really large wave and I am completely out of position for it arrival. The sheer power of the wave picking me and forcing me back down to the bottom of the ocean causes me to become disoriented and have lost control of everything including my Boogie Board, which comes loose and swivels back at me in the form of a weapon knocking me hard on the head.
I roll over several more times and come crashing down with a violent crash on to the shore of the beach. Landing squarely on the left side of my body. Mr. Spleen makes a quick appearance as he has taken a direct hit and it’s painful. I want to hide the pain but I cannot stand up. Mary Jo notices what has happened and the order comes down from Mama bear, body surfing has come to a close for me on this trip.
The next morning I awaken to a bruised spleen accompanied by black and blue marks on my abdomen. As I head downstairs for breakfast I am thinking to myself “Welcome to myelofibrosis.” I had previously taken plenty of falls while Mountain Biking but I had PV then. My spleen was under control then. This was something I needed to make sure I was keenly aware of from now on.
Modifications to the exercise program
For the next couple of months when I attempted crunches or tried to rise out of my seat while cycling I would experience pain. In late August I started PEG-INFN and in October flew to NYC and met with Dr. Silver who quickly schooled me on the do’s and don’ts of exercising with MF.
On the advice of Dr. Silver I have stopped doing crunches and all running. Dr. Silver said exercise movements like running put up and down motion pressure on the spleen, which can be damaging. I am thankful for his advice, as I would have most likely pushed through the pain eventually damaging my spleen. As of today the INFN has not only controlled my counts but in December I have finally seen a reduction in the size of my spleen. I can sleep again on the left side of my body without any discomfort and I am taking great caution with my exercising per Dr. Silver.
I am fortunate not to have the fatigue normally associated with MF. I continue to exercise regularly and still believe exercise and diet are the keys to beating fatigue and depression. I have noticed a huge difference in my energy level after switching from Hydrea to PEG-INFN and I can spend more time out in the cold weather again without my fingers and toes turning white for the first time in twenty years. This has allowed me to have a more flexible workout schedule.
I am also able to breath deeper, longer and more easily when exercising at more intense levels. The fogginess I used to get sometimes while on Hydrea is completely gone now as well. I have noticed I do not bruise as easily I did while on Hydrea.
It’s January and the start of a New Year and I ask that all of you who haven’t startede an exercise program. If you need help with creating one or just need advice on your current program please contact me at firstname.lastname@example.org.
© Jeremy Smith and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Jeremy Smith and MPNforum.com with appropriate and specific direction to the original content.
Comments on: "MPN LIFE: Exercising with MF." (17)
I really enjoyed your article. I too am trying to modify my exercise program. Would you please reply back with an updated email address? I’d like to get your input on my current exercise program. Thank you
Thanks for your comment, Bobby. Probably the best way to contact Jeremy directly is via his Facebook group, MPN Life.
Julie thank you for writing. I will not be getting a BMT unless my health changes. So far the PEG INFN is keeping everything stable. It’s early so only time will tell. I continue to exercise and travel on business each week. I do not have any signs of fatigue. Wish you the best.
Hi Jeremy I am sorry that you have converted to MF. Will you be getting a BMT? Thinking of you and hope you continue to be so upbeat.
Karen yes I remember your kind comments along with others. Yes we rescued a five year old Pit Bull who we named Maizy. I spend time working with a pit bull rescue organization trying to protect them from begging destroyed.
After reading articles about how food impacts our blood and cholesterol I to made changes. I shop from local farms first Whole Foods second.
Hi again Jeremy,
You asked about our diet. In 1996 my husband was diagnosed with coronary artery disease and had 2 stents implanted in his left anterior descending artery. After that we went to cardiac rehab at University of Michigan (they allowed spouses to participate too which was great!). We also went to Stress Management courses there and saw a dietician weekly for a year. We went on to become coaches in cardiac rehab for several years. So we have been trying to eat healthfully since 1996. We do most of our shopping at Whole Foods as we are so fortunate to have two in Ann Arbor. We eat organic as much as possible. I think the fuel we put into our bodies is of extreme importance right up there with exercise. We have a piece of chocolate every day and our motto is everything in moderation. Jeremy, I don’t know if you will remember but we exchanged some private emails when you lost your beloved dog. Do you have a pet now? We have our two wonderful Keeshonds who delight us every day.
Rebecca have you tried INFN or another Drug to help with your spleen and MF.
Karen I forgot to add what a great attitude you have about the conversion to MF. I am going to start thinking like that.
Thank you so much for sharing. What a great story I wish you the best and love hearing about your exercise. Please keep us all up to date. Did you make any dietary changes?
Very interesting, and not a little entertaining! You know, we are all so different though…..thankfully. I have been doing my 5-6 mile run per day since my 2004 diagnosis with MF, albeit more slowly. My spleen seems to be enlarging over the years and my hgb has been as low as 7.8 and as high as 11.1. Still I run. I will likely quit racing my (motorcycle) dirt bike because wrecks on this machine are even more painful than a boogie board. I cant say I have all the answers…just my unique experience. Thanks for sharing yours!
Jeremy thank you SO much! I loved reading your upbeat article. I have also moved from PV (1998) to early MF. Like you, this caused me a lot of mental anguish in the beginning. Then I decided…ya’ know this is a continuum and I knew it was coming so I am no different today than I was yesterday. I had my very first BMB in November and my fibrosis is 1 with no blasts or other ugly stuff so I was pleased. Like you, my only problem was my increasing spleen which in December was 21 cm. I realized that it simply could not continue to increase in size. I am thrilled to say that I am on a Jak1 trial by Incyte. This drug decreases the spleen without any reduction in counts! My spleen is now down to about 15 cm after only being on the drug since Dec. 10. I have not had a single side effect from this drug. I go to University of Michigan. I feel awesome, no fatigue, no nothing but I have never had fatigue…I think the daily exercise has a lot to do with that. I never ran long distances or did crunches and we only ride our bikes 25 miles at a time, but I can still do everything I always did every day at the gym and in my life which includes walking our dogs 1.5 miles every day before going to the gym. For the first time in years my left side dips in and I have a waist that looks just like the right side!! Yippee!.
Thank you Kathy. One of things I never say is cant. We can accomplish anything. I enjoy the PEG more than the Hydrea.
So glad that you shared your spleen with us. That shows an incredible amount of trust. :-)
As you know, I still have PV (or so I think) but was lucky enough to convince my insurance co. to pay for Pegasys. Am unable to take HU and I believe the Peg came just in time. Can’t approach your exercise level but am so pleased that you were able to wrap your mind and spirit around your new dx. Peace……………
Jeremy, What exquisite descriptions. I almost reached up to wipe the sweat from my brow from the shear effort of the ride. It’s interesting to know that there are specific exercise restrictions related to the type of MPN you have. My son who is in the Army doesn’t do sit-ups or run so his PT has been modified from that of the unaffected soldier. Since many hematologists seem to not be particularly familiar with many specifics of MPNs, do you think they would be prepared to counsel their patients on specific exercise limitations or modifications?
Thank you. Glad you enjoyed my article.
Most MPN Specialists or other Doctors do not understand the importance of exercising with an MPN because they do not train in school for this and since so many MPN Patients are generally well over sixty they let it go. I believe ten years from now this will change but it will take time and more evidence to prove exercising with an MPN is not just something you should do but must do. With that said Dr. Silver is the only specialist I have met with that advised me about changing my exercise routine to accommodate my increased spleen size, which I did not have deal with when I had PV but with MF now its very different. Had I not been given this advice I would have continued down my path and possibly damaged my spleen. TO be honest with you I do not believe most Doctors or specialists really care about exercise and how it can eliminate fatigue because so many of them do not even acknowledge patients who have fatigue. I will write more about the specifics of exercise either next month or the following month.
Can’t believe that hugh wave and your board hitting you on the head, ouch. Thank you for your article, it just may get me off the couch.
Thank you for taking the time to read my column. Please take the time to consider exercising and remember its something you should do the rest of your life. Once you start seeing the results you will wonder why you did not start earlier.