19 replies to this topic

[Archer591]

Any CMLers out there doing Triathlons?  Would love to hook up and discuss the side effects of medication while training!  Send me a note or email......

[HeatherZ]

I'm more of a biathalon person - work full time and then take care of the kids, house, and dogs.    Kuddos to you Tom for having the energy level to train for such a strenuous activity!  I know I would not have it in me but I am sure there are some others on here training for various things.

[akjones]

I was training for a marathon. Managed to get an achillies injury 3 weeks ago and am just shaking it now, so the marathon will wait until the fall.

I did run a 1/2 marathon about 6 months after being diagnosed . Only problem I've noticed is that I've lost some of my "high end". I attribute this to my slightly suppressed RBC count, I'm on the low end of normal.  Before getting injured I ran an 18 mile training run and felt as though I could go further so energy level is generally very good.

I was an elite runner in my prime (many years ago), also did a few triathalons.

My CML treatment is going OK, 2 log reduction after a year, on Gleevec. Doctor is thinking about changing meds, not so sure I want to as my side effects have been very minimal.

[cyclejoy]

Hi Tom,

I have never done a triathalon but have done century bike rides before dx in January 2011 - When I was dix I was training for my first ever 1/2 marathon and what a blow it was to discover what I was fighting.  I did complete 8 miles of the 1/2 but ran 11 SLOW miles the weekend before - not bad for a just turned 61 year old lady ;-)))   So now my husband and I are training for a two week bike ride, av. about 35 miles a day and I have NO idea how all of this will work with Sprycel. Since i have never been concerned about speed in any event...more of an "enjoy the journey" type, I figure I have all day to do each ride. So I don't know how the drugs or disease affect one's performance but my onc said just keep hydrated.  I have had minimal side effects other than horribly dry skin -I mean I feel like a lizard ( and hope i don't look like one).    I will be doing a weekend "Spring tune up" weekend after next - of about 35 miles a day  - so will let you know how this goes for me.....and I will be walk/running in the Peachtree Road Race on July 4th, God willing.  I suppose, mostly I don't know how the heat will affect me as it seems like this disease process does create more problems with one's thermostat. This winter I was either too hot or terribly cold and I just don't recall ever feeling that way before having CML.

Amazed by your triathaloning!  When were you dx?

Best wishes.....

[akjones]

My thermostat is broken as well, I cannot stand the cold. Spent this winter wearing thick sweaters all of the time. Living in an old drafty Victorian house does not help.

Andy

[gark]

    Before diagnosis in 2005 I ran marothons and was a 50-70 mile a week runner, as well as cycling.  What made me realize something was wrong was when I was out of breath after just a few blocks of running.  i take 800mg of gleevec, and can only manage 4-6 miles of running 5-6 days of the week.  I can no longer run fast, and i always feel sore, like i used to after 20 milers.  i am too stubborn to quit.  i ride my bike to and from work.  Biking is what i should switch to, as I find it does not bring on the aches and soreness as does running.  i definately am always on the anemic side due to gleevec.  The longest i have been able to run since dx has been 10 miles, and it made me grumpy and useless for the rest of the weekend.

      I think you can do it, as long as you are safe and hydrated.  i have had fairly good results maintaining fitness, although i can no longer take it too previous levels.  Everybody reacts differently to their meds.  Pain and fatigue have been my faithful traveling companions on this five year journey.  I say go for it...or at least some version of IT...Some movement is better than none.  Every lap around the block for me before going to work is my personal victory against pain, cml, and inertia.  love that you are considering it!  Keep us posted on your progress and triumphs!

[Archer591]

Great job!  I am glad you are keeping active.  I am terribly fatigued most of the time, but I certainly feel better with the workouts.  I hope you get back to the triathlons!  I have never been able to be an elite runner, swimmer, or biker, but I am strong in all three, and now the goal is to just stay healthy and finish!  Take care.

[Archer591]

Keep going!  Great attitude on keeping active.  I noticed you are from Portland.....difficult to workout with all the rain!  I just ran the Shamrock run in the rain with 30K+ other people!  Great experience while in Portland.  I am doing Ironman St George this May and have 30 days left of training.  This is my 2nd Ironman since I was diagnosed (April of 2010) and it is taking a lot out of me, both physically and mentally, to get this done.  During my long training rides/runs, I keep trying to think of slogans for a custom shirt to recognize cancer, the LLS, LiveStrong and any other group that helps people with cancer.......the lead slogan in the house at this point is:

Front:  I have Leukemia

Back:  What is your excuse?  

Keep up the workouts!  I am doing Cycle Oregon in September.....should be a ton of fun!

Tom

[gark]

Wow, Tom, that is impressive and very inspiring.  Yeah, the rain squelches the fire of enthusiasm at times, but I always feel so much better after activity.  I love the T-shirt idea.  i have even thought of wearing something like that at times.  No desire to compete at this point, but perhaps a half-marothon after i turn 45 in August would be a goog thing to try.  There is the Portland marathon and half marathon in the fall.  Keep up the good work!  I am truly impressed!

[mcfowler33]

No triatholons for me, although I've been thinking lately of training for something - maybe biking because I hate running with a passion (except when playing basketball).  Cancer kinda wakes you up ya know.....  Anyway, I do play a decent amount of full court basketball (2-3 times per week) and have found that I have only gained energy since my diagnosis on March 9th, 2011.  I'm pretty surprised that I have much more energy now that my WBC is normal than over the last year when I was undiagnosed with an apparent high WBC.  Gleevec for me has had almost no side effects except minor aches that can be fixed with a little Tylenol. So, I have not plans on slowing down - going dirt biking in a couple weekends too!

Im not ready for a triatholon, but do want to do something like it soon....  It can definitely be done Tom!  Train hard and go for it!

Marc

[Trey]

Maybe the back of your shirt:

"I HAVE LEUKEMIA, SO WHAT'S WRONG WITH YOU?"

[Tedsey]

Dear Tom,

I have been diagnosed about 18 months.  I used to be very active.  However, about 5 months on TKIs, I developed severe anemia (amongst other things, like hemorrhaging because of low PLT).  I have had trouble walking across the room without my heart pounding through my chest.  And breathing has often been a struggle just sitting and doing nothing.  Huge change in my lifestyle.  Major bummer, but I am getting used to it.  What I would give to run around the block whenever I wanted or take my toddlers to the park every day.  I admire your strength and determination to not let the CML get the best of you or change your lifestyle.  I like the slogan, "I've got leukemia.  What is your excuse?"  I find I do much more with my added CML issues than your average mom with young and extremely active toddlers.  In that respect, I feel your slogan totally relates to me too.   And although it would be bully to all the stupid people who have said and done such cruel and insensitive things to me since I was dx, I would hate for people to think that having CML is nothing and it would be easy for me to do a triathlon (since I look OK on the outside and have my hair, there are many who think I have been cured without me telling them--including family).  I have always been very militant about eating right and exercising to keep healthy before dx.  Go figure; go figure.  I now have to accept that right now, there is not much I can do about my newly flabby physique and physical weakness (onc's orders again not to work out).  I shall finish my triathalons vicariously through you.

I wish you all the best and continued good health and strength (it really pleases me to hear there are people like you out there with CML; it gives me hope that I will get over all my physical issues and return, once again, to an active life).

Tedsey

P.S.  I made up a slogan for myself to just wear to the grocery store, play parks and kids' museums.  Here it is:  "I've got leukemia.  Quitcher bitchin'."  It is often hard for me to have a lot of empathy for some.  "Like, I can live with my husband not doling out the cash to buy me a bigger diamond or designer purse or latest Mercedes-Benz.  Really.  It is no biggie.  And too bad about your housekeeper and nanny.  It is hard to find good help these days...  And I am so sorry you are depressed to be pregnant with your 3rd boy.  Maybe the next one will be a girl..."  My crazy world at present.  Anyone want to talk molecular biology?

[Archer591]

A lot of great discussion about my upcoming triathlon and being active.  What does everyone think about being active?  I am currently on Gleevec - 400mg and my Doc thinks that being active helps the overwhelming fatigue. 

I am less than four weeks away from my Ironman....I will keep posting on this site and keep all of you updated.  I am participating/finishing with all of you and certainly will be leaning on all of your positive thoughts to keep my body going after hour 10, 11, 12.......

My Daughter posted a great quote on Facebook today......"Everybody dies, but not everyone lives".  Make it a great week and live strong! 

[CallMeLucky]

Tom - I can tell you that exercise has made a big difference.  When I was first dx I had been exercising a good amount ( about 60-90 minutes a day of rigorous exercise; weights, cardio, plyo, yoga).  When I got dx, I stopped for a while to let things settle down.  I then started up again but felt I didn't have enough energy so I started to let it slide.  I was tired all the time and my legs were really aching a lot.  I deceided to get back into it.  It has been very hard, but I find that if I push through it, once I get going, I can do it.  I can't push as hard but I push hard enough to really feel it.  I have to do it in the morning, end of day I am too tired.  I have found that I am slightly less tired throughout the day but most of all, the leg pain is gone.

[gark]

Call Me Lucky, that has been my experience...the leg pain, stiffness, and fatigue are much improved if I push through the initial resistance and fatigue.  Like you morning is best, and afternoon, forget it!  can't do it like i used to, but absolutely have to do a version of IT or i feel like crap.  I am really inspired and happy to see Tom taking it to a level that is rare for even for

super healthy and athletic people.  Tom, keep up the good work, and keep us posted.  You are almost there!  Now I have no excuse this morning!  Let's keep moving to support each other, and especially Tom.  I am shooting for a slow 7 miles run this morning!

[Terrasage]

That's awesome.  I love it.

[eithne01]

God Your'e making me tired just reading this.Fair play to you! I feel so tired all the time,

My legs ache and cramp all the time but I'm going to try the walking again anyway.Good luck with the Ironman.

[Archer591]

Hi all,

A follow-up to my previous post on triathlons.  Last Saturday, May 7th, I completed my 2nd Ironman triathlon in St George Utah.  The course was very difficult and with the addition of 95+ degrees on both the bike and run course, it became a contest of survival.  I crossed the finish line in 14 hours 31 minutes!  Woohoo!

[LivingWellWithCML]

Wow Tom - that is an amazing feat!  Congratulations!  I drive through St. George often ... the terrain is so incredible out there.

Did you take your Gleevec that morning before you started the race? :-)

Dan

[gark]

That is wonderful news, Tom!!   What a victory.  You are one-of-a-kind!  Keep us posted on your progress.  BTW, how are you feeling after ?