4 replies to this topic

[cryjohn]

I had a strange thing happen yesterday (have had it once before in my knee).  I was getting out of the car, wasn't even touching anything and felt a pain in my thumb.  Within 5 minutes it was swollen and purple!  The last time it happened my platelets were a little low so the doc on call advised that I go to the ER to get labs and monitor for a blood clot. All turned out negative then.  My platelets now are within normal range. Just wondering if anyone else have had this kind of experience?  Is Gleevec or CML related or totally random?  Although a bit better my thumb is still swollen and purple.  I did speak with my onc. today.  He indicated he hadn't heard of this kind of event while on Gleevec.  He does want to see me tomorrow.

Thanks

Crystal

[Trey]

Not sure it is related to CML or Gleevec, but poor platelet quality as a result of the CML is a possibility.

You should ask your doc about Raynaud's Syndrome if your symptoms seem to match this:

http://www.medicinen...non/article.htm

You might also want to read this:

http://www.medhelp.o...gers/show/32048

Let us know what you find out.  Hope all goes well.

[hannibellemo]

CJ.

I've had that happen a couple of times. Once I remember slightly bumping a knuckle, key word "slight" and was surprised when it developed a hematoma. They seem to go away very quickly and I haven't had it happen in a couple of years. I was on Gleevec at that time, but not sure that has anything to do with it.

My most recent oddity was purpura on the tops of my toes. After a month that has gone, also.

Pat

[HeatherZ]

I have the problem too but it is always in my eye.  Just because the Onc said he had never heard of it happening, make sure they record it because it may happen to others as well.  I know my Onc is working on something to record anything that could be side effects from the TKI drugs so docs all over can reference what other patients have experienced.  Hang in there Susan!

Heather

dx 3/2010 G400 since

[cryjohn]

Thank you for your responses.  I did see my onc today and guess what, platelets have dropped.  I was running around 165 for about the last 4 months and now they are 130.  Really not that low but for me it must be because when I had the burst in my knee last fall my platelets where around 120.  So, finding out the platelets have dropped explains why the bruising is so bad.  They really didn't give me a good reason for the sudden drop.  My WBC & RBC continue to be below normal, however my HGB was within normal, 11.7 (first time in months).

The doc did indicate the "everyone is different" and for some people 120 or 130 platelets won't cause problems, however my threshold seems to be around that range.  Boy, I sure hope they don't all of a sudden decide to take a nose dive below 100....I'd be able to start a "Blue Woman Group" ! 

Again, thanks for your help.

Crystal