35 replies to this topic

[Randofu]

Just curious if anyone has had this (what I believe to be) side effect, or if anyone can at least tell me what it is.

Yesterday I noticed some very tiny red dots on my hand, and didn't think too much of it. It's not really like a rash, since the skin itself is still smooth and unaffected.  It almost looks like freckles, except they're too red, a little smaller, and there are too many of them densely packed together.  Since it was just on my hand, I didn't really think anything of it.

Then this morning I noticed it all up and down my legs.  However, it is pretty small, and it's kind of hard to notice, so it's possible that I've had it for a long time down there and it just didn't strike me as odd until I saw something similar on my hand.

Have fun figuring out my side effect of the day. 

[Trey]

They are likely petechia (plural is actually petechiae), and are caused by the leukemia, not the Gleevec.  Is your platelet count low?  Sorry to tell you, but they don't go away without laser zapping.

http://en.wikipedia.org/wiki/Petechia

[everonward]

Hi there

I too get the little dark red dots on my skin. Only had them on my hands and usually on the palm side around the base of fingers and thumbs. However, they do come and go. Last month I had a couple of clusters of about 6 or 7 dots around both thumbs and on the moons of the palms. Current situation is none at all. Perhaps these are something different.

They are dark red, about the size of a pen dot, completely flat and do not itch. I tend to notice them when applying hand cream.

So many side effects, so many questions.

Marian

[Trey]

Marian,

Your issue sounds to me like the Gleevec rash, but of course I don't know without seeing it.  My petechia have never gone away, since they are actually embedded dried blood under the skin.

[sandimartini47]

Hi Randy,

When I was first diagnosed, I had red dots over my arms and hands and my oncologist said that was from the leukemia--not to worry.  They seemed to have gone away after awhile but many of them have come back in different places on my arms and hands--they are all different shapes and sizes--some are dots and some are a little bigger; I know all kinds of things keep happening to us, take care, sandi

[Randofu]

Actually, petechia was what first came to mind, since I had it as a kid...  But this seems slightly different to me.  The dots seem smaller and more regular.  But maybe that's just a coincidence.

I'm sure it's fine, but I'll make a note to mention it to my doc the next time.  Thanks. 

[janekaye]

I'm not on Gleevec, but since switching to Sprycel, small red spots have become LARGE red spots, dry skin, itchy, aggravating, you name it!  Dermatologist has prescribed a cream which helps a bit, but doesn't eliminate the problem.

I have read that Gleevec causes skin issues as well, but I really didn't experience those until I switched to Sprycel.  Oh well, you get rid of some side effects, you pick up some others --- Murphy's law!!

Best of luck,

-janekaye

[Pesty]

Hi all, since my diagnosis in September I have been reading this discussion board with interest.  I would like to thank you all for all of your input, it has helped me enormously in getting through the first few months. You have all been a huge comfort to me.

I read this post with interest as I have found the same red dots appearing on my chest area. Are they harmful or a sign that the Leukemia is getting worse? 

I am also finding that I have a number of moles appearing on my body.  Does anyone know if this is this related?

Thanks

Michelle

[Trey]

Michelle,

The red dots, whether rash or petechia, do not indicate that the CML is getting worse.  These issues are caused by either the Gleevec itself, or by changes in the blood caused by Gleevec fighting the CML.  Gleevec (and all 3 CML drugs) inhibit more than just the leukemic BCR-ABL.  They also inhibit an enzyme called c-Kit which is a factor in skin cell development.  If the skin problems are caused by changes in the blood, it is usually from changes in the platelet numbers, so ask your doc about your platelet numbers. 

http://www.mayoclinic.com/health/petechiae/HQ01208

Moles could possibly be a side effect of Gleevec inhibiting skin c-Kit, but hard to say.  There is not much data on that issue.  They should be watched by your doc.

[Randofu]

Indeed, that seems to be the case.  I'm at the doc right now, and a blood test indicated that my platelets are low.  My doc is waiting for some more results before deciding how to proceed.

[Pesty]

Hey Randy, Let me know how you get on.  Did you go to the docs for a routine check or for this issue? I wasnt going to bother doing anything about it until I had my next check up on the 29th but you are making me wonder now!

Speak soon.

Michelle

[Randofu]

I just came in for a routine check-up.  Disclaimer: Don't freak out! What I'm about to say could upset you, but I don't think that it's related to my platelet count or my petechia, so don't assume that the same thing will happen to you.  It turns out that the reason the doctor wanted me to stay around was because my WBC was high.  It turns out that they found some blast cells, so things are kind of crazy at the moment...  The doc is switching me to Sprycel, which is another financial headache since I don't have prescription insurance, with the goal of a transplant in the near future.  Fortunately, I already know that my brother is match.  Still, this really sucks... It basically feels like I've been diagnosed with cancer again!

[kcpenne]

I've been in remission from DLBCL for over a year, but have noticed petechiae on my shins that has stayed since Mid-October, and also have been noticing tiny red dots and more freckles than I ever had. I'm getting scans next week and am a little nervous about what this stuff could mean.   Since I have the scans scheduled, I haven't contacted the doctor.  Of course I HOPE its NOTHING....

Just had to put this out somewhere cuz I've had this on my mind for some time.

[td1961]

Randy, Sorry to hear about the new fork in the road. Its a blessing that you have a match for transplant already, your young which helps immensely and you'll be a fighter! Sprycel is no picnic either but maybe it will work better for you. Here's hoping for a PCRU in your future! Best wishes and be well! Tracy

[Pesty]

Randy, I am so sorry to hear about your news. Like the previous post, age is on your side and you have a related doner.  They have a plan and and a road to follow. Sending good vibes from across the pond! Michelle xx

[hannibellemo]

Wow, Randy, I'm so sorry! There are several of us on Sprycel on this board and there is also http://www.newcmldrug.com (go to Sprycel Talk on the site) for questions you may have now or may think of as time goes on with Sprycel. Sending all sorts of postive thoughts your way! Hang in there!

Pat

[BethG]

Hi Randy,

So sorry to hear your news! I walked that walk earlier this year, so I do know how crazy it must be for you right now. And, you're right, it feels a lot like being diagnosed all over again!

Is your doctor running a mutation test on you? I'm sure he is, but you might want to check. If you are failing Gleevec, it is helpful if they know if (or what) mutations you might have developed. The good (is there such a thing in this situation?) news is that you still have Sprycel and Tasignia to try. And, if those stop working there are drug trials you can consider.

I'm not sure if you saw my thread, but I developed the T315I mutation which made me resistant to all the drugs on the market and I was heading to transplant. I did find a drug trial (Ariad) and this new drug is working really well for me. I am very close to PCRU after six months. There are several other trials out there as well.

Hang in there through this tough time. It is sort of like walking a maze without a map. Gather as much information and data as you can so you can make the best decisions for yourself.

Beth

[janekaye]

Hi Randy,

I will echo the feelings expressed by others on the board in saying that I'm very sorry your CML has taken this turn.  On the up side, however, I think you'll find the Sprycel to be a much "kinder" drug than Gleevec (only speaking from my own experience here), and hopefully a much stronger one that will deal quickly with the blast cells.  I'm sure you're in everyone's thoughts these days.

Take care,

-janekaye

[Randofu]

It seems that my CML has become ALL. I was admitted to the hospital today so that I could get some chemo for the next four weeks; then we'll be looking at doing the BMT.

Thanks for the support everyone.  It's going to be a tough couple of weeks.

[PhilB]

Hi Randy,

As with so many others here, my thoughts are with you, your family and your partner as you start this new battle.  I'm not sure many of us (apart from Trey of course) know much about ALL, but we are all still here for you and sending out the positive waves.

It sounds like you have a steep hill to climb, but you are young and have that all important matched sibling donor.  Please keep us all posted as you fight and beat this new beast.

All the best

Phil