6 replies to this topic

[JoshLee]

Hello All,

      I am starting my 4th week on Tasigna this week. So far my counts are pretty good. Last week my counts all come back as a little lower than normal, which I know is not optimal, but my onc. told me that this may happen from time to time. However, my spleen, which has shrunk considerably since diagnosis ( was on hydro. for 4 weeks prior to tasigna ) has gotten a little bit bigger within the past week. Is it common for this to happen over the course of treatment or is this an indicator of something else? It seemed to coincide with my counts going lower. Any ideas?? Thanks for your help. -Josh

[CDW]

Hey Josh,

I've been on tasigna since Nov 10, diagnosed in Oct 10. I'm 32, male and was diagnosed with a WBC of 108k.  I've also noticed fluctuation in spleen size. It went down really quick when i started on Tasigna and i hit Hematologic response in seven weeks. since then my blood counts have all been normal (notwithstanding slightly raised liver values) but my spleen has gone up and down in size (or certainly feels like it). I have found my spleen aches more/feels bigger if i am very tired or have been physically exerting myself - It was really achey when i moved house 3 weeks ago. I'm personally not worried about it too much as my blood counts continue to be normal and i generally feel pretty good. I view it as my body's way of saying "i'm working hard to fix you but right now you're tiring me out, please calm down and just rest will you!" I'm seeing my onc on 9 March so i'll discuss it with her and see what she has to say. I'll post on this thread what she says.

good luck to everyone of us

Chris

[JoshLee]

Hey Chris,

      Thanks for responding. I am 26 years old and was diagnosed on Dec. 23rd. 2010. It gives me a little peace of mind to hear that someone else has been experiencing something similar. I have been a little worried and confused because my counts are actually a little low right now. My WBC is around 4.0 and my platlets are like 133 or something. I believe my RBC and Hemoglobin are a little low as well(I forgot the print out from last week!). You would think that spleen size would correlate? Maybe someone else could shed some light on this. Physically I feel pretty good most of the time, which I am thankful for. I am actually going to get an ultrasound tomorrow because my onc. wants it on file regardless. 7:30 a.m. and I have to drive 45 mins to get there! Dang. I have another question for you if you don't mind. Did you exercise before dx. and if so, do you continue to exercise while I Tasigna? I was having a few heart palpitations at first, but they have lessened significantly. My onc. had me walking around with a heart monitor on for a few weeks so I could keep track of my "events". A little extreme maybe, but I am glad he cares about my health. I get out for a 2 mile brisk walk every day, but am kind of scared to push it by running. What do you think? Thanks for the response....Appreciated more than you know! Best Wishes for the Future. -Josh

[CDW]

Hey Josh,

it sounds like you and i are in similar situations. my counts were initially low and stabilized after 7-8 weeks on Tasigna. In Jan all my counts were back to normal - WBC and platelets had been low but recovered ok. Liver values continue to be ~10% above normal values, but that is a common occurence with Tasigna. I did exercise before CML and it was my relatively rapid drop in stamina and fitness that really prompted a visit to the doc. I took it real easy while my spleen was enlarged to minimize the chance of inadvertant rupture so continued with walking only. I started running in Jan this year and have played volleyball a few times. I still tire easily and my running times are pitiful right now - but i'm not pushing myself too much. I have a busy job and I'd hate to tire myself too much so it impacts work perfromance significantly. I'm intending to exercise more once the warm weather hits, and I will play golf every week. I too have had heart palpitations, although I read elsewhere on the forum that others have experienced this - that is Q#2 for the onc next week. As i'm not a doc i'm reluctant to say get out and run, but only you know how you feel and just take it easy and build up real slow - as someone who has run half marathons and more 10Km races than i can count before dx, pushing out 1.5 miles in 16 minutes was initially a real knock. Just go at your own pace and take your time. you'll know if you push yourself too much because you'll feel tired that day, maybe the next. if so, just relax for a while. My onc encouraged gentle exercise, but that was before i mention the heart palpitations next week :-)

chris

[Trey]

Josh,

I think the Chris and his "amazing talking spleen" has a good point.  The spleen does a number of things.  It tries to regulate blood quality, and that does not always mean that it is regulating only leukemic cells.  it also regulates platelet delivery, storing them for when they are needed.  So it could be platelet fluctuations as well as any number of blood quality issues.  It can take a while for the spleen to feel like it is catching a break after so much abuse from the CML.  Give it a chance to catch its breath, and listen to hear if it talks to you.  "Hey, I workin' down here."

[cometbro]

Hey Josh, i was doing exercise and playing basketball regularly before being diagnosed.  I'm 30 by the way.  With the initial shock and the fact that my spleen was a little enlarged, I decided to take it real easy.  I'm in month 4 of Tasigna and it was a month and a half ago that I started working out again...slowly.  I've been building up and right now i'm pretty much were I was before.  I'm lifting heavy weights and running like I did before.  Don't worry about "losing it".  You can take off a couple of months and get back where you were in a matter of time.  I would go with what Chris and Trey say and just feel it out and listen to your body, carefully.

I'm still afraid of playing basketball though.  Basketball can get physical and I've noticed since taking Tasigna that my skin is drier and cuts easier.  Don't know when I'll get back on that.  I guess I'll wait a little longer until I feel more comfortable.

[CDW]

as promised, I said i'd post here what my onc said about spleen size fluctuations. Onc pretty much echoed what Trey said regarding blood quality and the fact your pleeen operates as part of your immune system. although my spleen feels achey today, she really couldn't feel it. my WBC was 108k when dx, spleen was 96% bigger than normal (volume) and she thinks it could take a long time for it to feel normal again.  as for heart palpitations, she was not overly worried, due ti being sporadic and not seeming to be linked to exercise - did another EKG to make sure QT was ok - this was fine.

so apart from my ALT values being twice upper normal limit, everything else seems ok. I'm going to try improving my water intake over the next 4-6 weeks and see if that does anything for the AST/ALT values - I'd be curious to hear if anyone has had success with this. (it's my idea BTW not the Onc)

hope everyone is well!

Chris