7 replies to this topic

[jcoon]

Hi everyone.  I am 27 and was just diagnosed last september, 2011 and have been on sprycel ever since.  About a month ago my PCR and bone aspirate came out totally clean which was great news.  However since then I have been so paranoid of a recurrence.  I have a big bruise on my thigh, just like the bruises i had right before i was diagnosed.  and today my leg muscles felt achy, just like they did right before i was diagnosed.  I keep palpating my abdomen to feel if my spleen is enlarged again (its not) but im tired of the anxiety.  My next blood draw is in a few weeks and im already nervous about something resurfacing.  i wish i could just relax and enjoy being in remission. 

my question is, has anyone else on sprycel felt like the side effects feel similar to their CML symptoms?  should i just assume any scary symptom is a side effect of my medication and not new symptoms of CML?  from what ive found online bruising easily and muscle aches are sprycel side effects, so im trying to not freak out too much.

[jcoon]

Thanks for the quick reply Billie, its so comforting to hear from others who are going through the same thing.  after being diagnosed its easy to keep expecting bad news.  i will relax, but i think it will be with hot chocolate instead of wine

[pammartin]

Hi,

I was diagnosed in early October and I can relate to what you are saying.  I don't remember banging my arm on anything, but there is a purple looking bruise that appears.  I seem to be sleeping a lot again, for a while I had more energy, that always sends a scare into me.  I try to give myself some leeway, I am still new to this and it hasn't been that long since you were diagnosed either.  Almost everyone on this board has told me it takes around a year to start to really feel comfortable, even with great early results, CML hits us like a freight train and it takes a while to recover from the train wreck.  I am waiting for the time when results begin to mean less, the anxiety that accompanies every test we take is horrid, I have to fight to not allow it to take over my thoughts and life until I once again hear I am 'ok'.  I hope you had a chance to enjoy your hot chocolate and secured a great nights sleep!  I am rebelling at present, I am to go in for labs every week, the co-pay for the labs just rose again, it is now over $80 a week, then with gas so high, I still travel about 30 miles round trip for new lab I am using, kick in the Sprycel co-pay and CML isn't all that cheap to maintain.  I figure I can go for labs 2 times a month, and by summer if things stay the same I am going once a month, then by fall I am only going for the PCR test in Pittsburgh.  I realize I am not following dr's orders, but I am not cutting dosage of the Sprycel nor am I skipping doses at this point (although I would be telling a lie if I wrote I never thought of both options.)  I can't stand how I feel, I allow CML to control my life, my thoughts, and many of my actions, and the ones I try to overcome I struggle with, no matter how my intentions are the night before, I end up sleeping part of the day away when morning comes.  Somehow, some way, I am going to win this entire battle with the CML, it packs a pretty good punch but one of these days I am going to remember banging my knee on that darn corner of the coffee table when I do it, and then when the scary purple bruise appears I am going to say, 'Pamela, you are a serious klutz!'

Take care

Pam

[Trey]

The easily bruising issue is usually a "blood quality" issue, often related to  platelets.  Prior to diagnosis the platelet issue is caused by the CML, and after the CML is under control there can be blood quality issues that can cause the person to easily bruise.  These can be either low platelets or else poor quality platelets which do not clot as well, or maybe a combination of both.  It can take the body a couple years to recover blood quality to "normal" levels, even though the CBC blood counts are sufficient.

[pammartin]

Thanks Trey, I had read something you posted in the past about poor quality platelets but had forgotten about the post until today.  I find it interesting it takes years for recovery, amazing stuff.

[jcoon]

Thanks so much for the responses.  Pam, im right there with ya.  im trying to not let it control my life, but the past few days it has been constantly on my mind.  i just want to have another clean blood result, but just like you said, ill probably get worried again until the next result.  i think with time it will be less scary. 

im so sorry to hear about your expensis, just something else to add stress right?  i used to get bw done every week, but after my blood count went back to normal i only had to go once a month.  also, are you taking advantage of the sprycel support program where they pay up to $100 of your co-pay, every month for a year?  my oncologist told me there are programs out there for the medication expenses, and i shouldnt worry about them. with the co-pay assistance i dont have to pay any co-pay, so i am very lucky.  anyways, hope today is a positive day for you, take care!

jenelle

[jcoon]

thanks for the great info Trey!