24 replies to this topic

[LivingWellWithCML]

Hi everyone,

I am a newly diagnosed 42 yr old Chronic Phase CML patient.  I was diagnosed on Mar 26 2011 with ~ 150,000 WBC.  I did Hydro until Apr 11 and switched to Gleevec 400mg on Apr 13, so I'm about a week into targeted therapy - WBC on Apr 15 was normal (Gleevec keeping things stable after the Hydro -- does it work this fast??).   I have a zillion questions , but I wanted to start with a question for any folks who are living with CML and are pretty active runners.  Before my diagnosis, I was running about 15 - 20 miles/week, but my pace had slowed down by about a minute/mile for the past three months or so -- which is what prompted me to go into my GP to get checked out.  Amazing to think, but running is the reason that I caught this thing before my annual physical!

Are there any folks out here who are pretty heavy runners (or perhaps distance bikers and/or swimmers) who are managing their CML with Gleevec?  If so, I'd love to hear about your experience and potentially what to expect.  I haven't experienced any noticeable side effects from Gleevec (yet?), but my running is already speeding back up (presumably because my RBC is heading back up to normal, cause it was a bit low at diagnosis).  I'm hoping that this amazing therapy will allow me to return to original running form, because this particular form exercise is really important to my personal well-being.  Is this a realistic expectation?

Thanks in advance for any feedback, and I look forward to getting to know others on the discussion board.

Dan

[CallMeLucky]

Hi Dan,

Welcome and sorry you had to join us.  Glad to hear your treatment has begun and so far things are going well, yes Gleevec can get blood counts back under control very quickly, so that is a great sign.

With regards to running, while I am not a runner, I do exercise for about an hour everyday, fairly rigorously.  I find it helps with a lot of the side effects like muscle aches and fatigue.  Probably my biggest complaint on Gleevec is the fatigue level.  I am 37 and was diagnosed 7/2010.  I am also on Gleevec 400mg per day.  I hesitate to tell you what to expect because everyone seems to have a different experience on these drugs.  Some people seem to shake it off pretty well, others take it a bit harder and it definitely slows them down.  If we are talking in generalities I think at your age, with your fitness level, you will likely fair along ok in this area of exercise.  I think it is reasonable to expect that you will probably not be able to hit the same levels you were before you got sick, but you may be able to maintain and some days do better than others.  There will likely be days where you will feel pretty tired, but then other days where you feel pretty good.  It really is hard to predict so what I am basically telling you is what my experience has been.

You should read this recent thread http://community.lls.org/thread/10056, it was a conversation about participating in triathlons, so there was some good information in it and responses from people who are more active.

Life with CML is different, but it is still good and there is every reason to plan to be around a long time living with the disease.

Ask away when it comes to questions, there are a lot of very knowledgeable people on here who have been living with the disease for many years.  There is a lot of good advice and topics range from the obvious to the down right personal.  We all understand, we are all going through it, so feel free to be as open as you want about anything.

Once again, welcome, I hope you have a good journey and you feel well.

[LivingWellWithCML]

Fantastic, thank you very much for your quick response!  That is a great thread that you pointed me to ... exactly what I was looking for.  I was above average but not at an elite level - I run the Peachtree 10K Road Race in Atlanta every July 4th and my time is usually around 49 minutes.  In scanning through that thread, it sounds like a very realistic expectation to get back to that pace while on Gleevec (assuming that CHR is achieved and maintained), so that is something to look forward to.  I completed my longest run this morning since the diagnosis and my pace was measurably faster (and with controlled breathing!), which was something I haven't felt in a few months - it made my morning!  Perhaps the RBC is returning to a normal level on Gleevec?  My next blood check is on Friday Apr 22, so we'll see.

I am cautiously optimistic at the moment, because I haven't felt any of the initial side effects that some folks seem to get near the beginning of treatment (nausea, muscle cramps).  I'm taking Gleevec with a big bowl of multi-grain Cheerios and a glass of water at 7am daily, so I imagine that's helping me avoid the queasy feeling.  Definitely hoping that this is a good sign!

I really appreciate your feedback - it is definitely helpful to read and interact with others who have been dealing with this awhile...

Dan

[Marnie]

Hi, Dan. . .welcome to the club.  I used to be a pretty serious runner. . .10K, marathon, triathlon.  But I trashed my knees and had to give it up quite a few years ago.  That said. . .my diagnosis of cml almost 2 yrs ago has not slowed me down in kayaking, bicycling, snowboarding, motorcycling, trail riding, basketball, etc, etc.  I'm guessing you'll be able to keep up your running at the same pace that you used to.   Good luck, and keep on with the fun stuff.  Life's too short to give up on what we love to do!

Marnie

[sferrazza]

Hi,

I think everyone is so different with how they respond to the cancer as well as what type of drugs they take.  I am 45 and diagnosed a year ago.  I was put on Gleevec but had so many terrible side effects, one being severe fatigue.  I used to run 25-30 miles a week 18 months ago and now I go out once a week or so.  I'm now trying Tasigna and having severe headaches, I cut back and now working up to the full dose and will see what happens.  I also think there are ebbs and flows with this illness as I have had great days where I feel like I could run forever and days where I don't want to get out of bed.  I'm looking forward to running again full time because it's what kept me sane!

I hope that you can continue to run and feel good.

Susan

[LivingWellWithCML]

Great - thanks for the feedback from everyone.

** Susan - my guess is that you'll be able to eventually get back to full-time running, especially as the fatigue goes away with Tasigna.  I look forward to hearing about your mileage increasing, and we can share our times.   I am curious, though - how long was it before you started getting the severe fatigue on Gleevec?

[CallMeLucky]

For me, the fatigue built up over time.  I would say around the six month mark is when I really felt it the most.  Prior to that the muscle cramps in the leg were more prevalent.  At that time I had pretty much stopped exercising, I was just too worn out.  But I noticed that the pain in the legs was getting worse and it was emulating a restless leg type of cramping so I started to exercise again to try and help.  The exercise did help with the muscle aches and the fatigue.  I still have considerable fatigue, but I am able to push through it when I need to.  Exercising helps my mood and the muscle cramps are much less.  Overall if I could get the fatigue off the table, I would have very little to complain about with regard to treatment.  I'm still hoping that as I get closer to a year and then 18 months on treatment, the fatigue will lessen up.  Also looking forward to the summer.  I went on vacation in November to a tropical climate and in the warm weather I felt much less fatigued (not discounting the fact I was on vacation, but the warmer weather seemed to be a big part of it).

[jjg]

Hi Dan,

I was a very active runner before Glivec (Australian for Gleevec)...I actually ran 100k the week of my diagnosis bone marrow biopsy (Dec 2010). Since then I've had a lot of achillies problems. To be honest I also had other tendon issues before diagnosis so I can't really blame the Glivec. I'm in my 3rd week of a gentle comeback but in the mean time I've been mostly riding with a bit of water running. I didn't start Glivec until mid Feb so I'm just over 2 months in. In the first month I had some side effects that didn't really bug me - numb hands for a week, 5 day rash and a weird feeling in the first hour after Glivec. Then after about 6 weeks I had stomach pain, night time nausea (I take Glivec at breakfast) and significant tiredness. As somebody who has run 100-120k with hard sessions for weeks on end I thought I knew tiredness but occasionally the G tiredness floored me....literally....but I normally bounced back within a few hours. After a few bad weeks I've had a few good weeks - although this morning one eye was almost swollen shut. My bad patch did coincide with lowish hemoglobin which is now back to normal. My white cells are still dropping (anc was 1.5 a wk ago). All the while I have ridden btw 250 and 400k per week - mostly commuting with some 3 hr rides on the wkend. I find that even if I'm stupidly tired at work I can get on the bike and ride (easy) 18k to get home. I think the endorphins put the tiredness on hold until I get home. A couple of times I've ridden home and 5mins later I'm too tired to make my own dinner - enter superhero hubby. I've also noticed that if I run out of food energy I really struggle. I've always been a bit of a camel - able to ride/run for hours without eating or drinking but the CML/glivec has reduced my camel hump.

I do exercise in the morning, which makes me nice and hungry. Then I am able to eat a huge breakfast with the glivec - I don't know if I need to eat so much to take the glivec but I'm hungry. Fortunately since surviving a summer in Atlanta I've always exercised early but I know others struggle to exercise first thing. Often after breakfast I can feel a bit average but if I ride to work I've always recovered enough to ride home. It is a bit strange to me just how tired I can feel with G and then I wake up the next morning feeling just fine. If I was that tired from running before G it would normally be game over for a couple of days until I recovered.

I'm taking 600mg (despite being quite small for my height iykwim) because we are hoping for a quick response for a possible pregnancy. Also the 2nd generation drugs are not approved for first line treatment in Australia yet. I have thought about splitting the dose but I like the fact that I get to exercise when the last G was almost a day ago. Sometimes when we ride late on the wkend I feel as I am getting stronger and stronger towards the end of a 3 hr ride because I'm getting rid of more of the G effects. Sadly when I do exercise long and hard I often get more nausea with the following G - tried anti-nausea meds last wkend and was much happier. It took me ages to work out how much nausea was contributing to my tiredness.

It was interesting to notice that you felt the CML running. I was also aware that something was wrong (elevated heart rates in easy runs) even though my wbc counts were way lower than yours. I always had regular blood tests because of running and iron deficiency. I was diagnosed after 3 tests (six wks apart) showed very slightly elevated wbc numbers. I may just be the lowest wbc count ever at diagnosis - 12,800. Two months before diagnosis I'd had a disappointing race result - probably 10sec/k slower than hoped over 3.8k. 6 wks before that I had raced really well, so I guess the CML started affecting my running just at the wbc counts started scraping above normal. Interestingly enough the blood tests they took just after the BMB (before I started glivec) showed completely normal counts.

I was 37 at diagnosis so realistically my 16min 5k days were coming to a  close anyway, but my main motivation for running was just  that...running. I definitely hope to continue exercising as much as possible, be that running or riding or worst case swimming or really worst case walking. Who knows what will actually happen...maybe a marathon beckons for both of us.

Josie

[LivingWellWithCML]

Josie,

Reading through your post was so helpful.  Thank you for taking the time to outline your experience thus far with Gleevec.  I started on 400mg one week ago today and my running pace has already shown some signs of speeding up - I will get a CBC on Friday to see how I'm responding.  However, based on what I've been reading (from you & others), Gleevec could eventually cause some real fatigue symptoms in a few weeks that will impact my performance, so I guess I just need to be prepared for it and not let it discourage me.  I've done several marathons and would like to do another ... definitely too soon to say whether this illness will allow me to do that.  But hey, things could certainly be a lot worse!  BTW, you were running 16 min 5Ks in your 30s?  That is amazing!!

Oddly enough, the day I got "the call" about my WBC, I ran a 5K race with my 7 year old son that morning and I had to huff & puff to a 26.30, which for me is unusually slow.  And my son beat me by a full minute - ouch!  I was normally about a 22.30 5K runner (sub-20 when I was younger), so I just could not understand why my breathing was so much harder for such a slower pace.  I remember finishing the race and being so puzzled ... thinking that it was an early 40s age thing, but my mind just couldn't shrug it off.  After I got "the call" that afternoon and got diagnosed in the ER, it all started to make sense.  Perhaps I should be proud that I ran a respectable 5K with 150,000 WBC clogging up my blood, LOL.

Thanks again Josie - and keep those legs moving!

Dan

[LivingWellWithCML]

Hey all,

Just a quick update for those who were interacting on this thread.  I'm still on Gleevec 400mg and approaching the three month point.  I'm preparing for the Atlanta Peachtree Road Race on July 4th (dubbed the world's largest 10K road race with ~ 60,000 participants!) and did my unofficial pre-race run on a marked 10K hilly route today at a solid 8 minutes/mile.  I am ecstatic and so thankful for this amazing TKI!  When I was diagnosed at the end of March, I could barely meander through a few miles (with stops and unusual amounts of extra breathing, which was ultimately how I caught the CML), so this is a big step forward in my physical well-being in a short period of time.  My last CBC (run a week ago) does show that I still have some mild Gleevec anemia, so I am still a bit baffled that I'm running as well as I am.

With all of that said, I do have what is hopefully a silly question -- is it possible to be exercising too hard when you're in early TKI treatment (< 1 year)?  Can regular and fairly intense exercise have a negative impact on the effectiveness of TKIs, and do any of your oncs express concern and tell you to take it easy?  I ask because my fitness potential has increased drastically since I started Gleevec, so I've jumped on it and am now running pretty hard 4x/week, swimming hard 2x/week, and doing weights hard 3x/week - and although it feels amazing and allows me to fight through any potential "Gleevec fatigue", I still wonder if pushing my body that hard can somehow freak out the CML.

Have you all heard any recommendations or thoughts from your oncs, or the CML experts regarding the intensity of exercise as one attempts to beat down CML early?

Thanks again for your great interactions on this forum...

Dan

[Marnie]

Hey, Dan!!  Congrats and good luck at the race.  I USED to be a big-time runner. . .marathon, triathlon, and every summer spent running 10Ks all over the state.  But that was before I destroyed my knees (3 knee surgeries later the surgeon told me to decide. . .keep running, or be able to walk in middle age).

So I can't give you any advice or knowledge about running while on TKIs.  But I continue to be extremely active while on Gleevec and now Sprycel.  Serious kayaking, snowboarding, dirtbiking, motorcycle touring, hiking, etc.  I say, do what your body lets you do.  Make sure that your doc knows what you're doing and o.k.s it, but don't let cml change your life if possible.  I participated in dirt bike camp 3 weeks after diagnosis (doc approved as long as I got my WBC down from 265,000).

Wish I still had my 25-year-old knees. . .I'd be out there with you.

Marnie

[jjg]

Hi Dan,

Good to hear that you are enjoying your exercise. I am still able to exercise everyday but not even close to pre CML levels. Part of that is that I've had some injuries and part of that is fatigue/muscle recovery issues that are definitely Gleevec related. When I told my hem that I ran 50k that week she was very happy for me. I didn't tell her I also rode or swam but I don't think that would have fazed her. Both my sports doc (who diagnosed me and who has seen me with bad G fatigue when I could barely stand) and my hem tell me I am responsible for listening to my own body - but they know I have been doing this since I was 10.

I think that the main thing is not to get too run down. The levels of exercise you report are very healthy for a normal person - as opposed to running twice a day which might get you very fit but pushes your immune system to the edge. So if you are recovering well between sessions, not catching every bug or seeing other signs of stress (high heart rate, skin infections, poor mood etc) then I'd say go for it. Measuring your resting heart rate daily is a very good tool for detecting over training and impending illness. The signs of over training with CML should be no different from without CML but they might come unexpectedly at times when we don't think we are doing so much.

I am on 600mg of Gleevec (4.5 months). There are days/weeks where it hits me pretty hard...and other times when I feel close to normal. I want to be on 600 for the moment because I'm in a hurry, but that fact that you are feeling good on 400 encourages me for a possible dose reduction in the future.

Enjoy the race and wearing your T-shirt!

Josie

[Pin]

Hi Josie,

Sorry to hijack this thread - but I don't know how else to contact you...

I read in a prevoius post that you did some IVF cycles before treatment - have the doctors told you what your options might be in having children in the future?

The reason I ask is that I'm 29 and really wanted to have children but I have already started my treatment and no one is really giving me any answers about this

Thanks,

P.

[jjg]

Hi Pin,

I started our own thread.

Josie

[Trey]

High activity likely forces more WBCs out of the marrow and into the blood.  The leukemic cells are more susceptible to the TKI drugs when they venture out into the blood.  There are hiding places in the marrow.  So activity of any type is likely a good thing for those with CML.

[AlexGM]

I have to begin by saying that -- Trey, I love your comments. You always come in with great bits of info.
I'm 54 and have been on Gleevec for four and and a half years and have gone through many of the side effects others mention.
I guess that my level of exercise is about at the level that Dan describes.
Before being diagnosed I used to run about 50k a week.
At first my onc. asked me to reduce my exercise activities to about half.
But then I tried to pick it back up and two years later I ran a half marathon.
I had a respectable time at 1h 44m but got myself a gluteus injury that I'm still trying to get over.
Nowadays I run three times a week. (about 35k)
The most bothersome of the Gleevec side effects have been muscle cramps, even of muscles I did not could cramp.
But I find that by exercising regularly those are controlled.
And at different times I definitely have felt reduced levels of energy.
My onc. told me that the Gleevec affects my red blood counts/ iron levels so I started taking an iron supplement that has brought up my iron (and energy) levels.
As far as energy levels sometimes I also think that I'm about to be 55 so I should not expect to have the energy of a 30 year old.
Good luck to all and keep exercising!
Alex

[LivingWellWithCML]

Thanks so much everyone.  Your comments are incredibly helpful.

BTW, I like Trey's theory a lot!

I think the short story is that we should all exercise to our own physical limits and not overdo it - some of us may walk, while others might be ultra-marathoners ... it's all relative.  I have been following that young man's case that recently developed on the board and noticed that he had just run a 1/2 marathon before finding out that he had rapidly progressed to BC phase after reaching a 1.5 yr MMR on Gleevec.  I am praying for him and watching his Caringbridge site, but it sounds like his exercise level had nothing to do with disease progression.

Keep that heart pumping folks, and I'll let you all know how Peachtree goes for me.  I'm hoping to squeak out a sub-50-minute time ... if so, then I'll be back to my pre-CML running form.  We'll see!

Dan

[tallsandwich]

Hi,

I'm in the 3rd year of Glivec 400, I have learnt the following:

- Exercise as much as you can (your limits) and you will sleep better - helps overcome the chronic mental fatigue.

- Cramps are only a problem with intense sports (for me Ice Hockey gives me bad cramps the night after playing, but if I referee a game the cramps are much reduced as the effort is less intense and more paced).

- Running is no problem for cramps but I only do short distances or around 8km / 5 miles to help with good sleep.

- Cycling is no problem but I do at max 16km / 10 miles just for fun.

- Running full marathons is damaging to your body, the only reason to go beyond a half marathon is for egotistical reasons. Don't expect full marathon work to help your tolerence of Glivec, as it is an exercise in pusing your body to its limits and in heath and scientific terms it is counterproductive in pretty much anyway you look at it (other than telling your friends you ran a marathon). Better to stick to sensible sustainable distances and avoid yo-yo amounts of exercise.

That's as much as I know.

[LivingWellWithCML]

Agreed.  I've done three marathons and ran them all pretty well, so I have nothing else to prove.   I might do another 1/2 marathon someday, but I think I'll stick to 5K and 10K races ... that'll likely be my Gleevec "sweet spot" ... until such point that my knees give out, LOL.

[tallsandwich]

Wow - now there's a positive phrase "Gleevec sweet spot" - full marks for having a well adjusted mental attitude :-)