2 replies to this topic

[raegles]

All of you have responded in the past to help, so I thought I would run my latest dilemma by the experts here.  I was diagnosed in 2/09 and started on 400mg of Gleevec.  Had numerous rashes and was switched to 100mg of Sprycel on 9/09.  I've been gradually since then becomming more fatigued and felt sicker.  My onc prescribed all the usual meds for nausea and fatigue, but indicated I was in molecular remission and should continue with the same treatment regardless of side effects.  Since 11/10 I have felt wiped out.  Started asking my onc about it and he said my RBC was borderline, but nothing to be concerned about.  On Dec 28, 2010 I blacked out on my way back from my onc appt., crossed the center line and hit a tree at about 50 mph head on.  I had my dogs with me and only one of them survived.  I was rushed to the local hospital and stabilized and then sent on to a trauma center with a broken femur, tibia, fibula, ankle and several broken toes.  I have been told my recovery could take months and I may never be able to walk as I did, if at all.  When I got to trauma center they immediatly did the first of four operations which I still need to have.  Before they would operate in the hospital, they gave me a blood transfusion for my low RBC.  They ended up giving me 4 units and I know I didn't lose that much blood in accident. I felt like I did when I was 30 and I'm 56.  Despite a leg in pieces and the associated pain, my personality totally changed.  I was like a new man.  Since comming home between surgeries I have slowly started to feel like I did in November.  I finally talked the home health nurse into taking blood and surprise, surprise, my RBC is low again!  My onc was contacted and he said the level wasn't low enough for me to be transfused.  I finally convinced him that it was what I needed and he agreed.  So tomorrow I may feel like a kid again after my transfusion.  My RBC was 9.8 which means nothing to me.  Is it possible that if that isn't a low normally, that it could be a low for me?  Am I more sensitive to a borderline RBC?  I feel weak, naseaus, and light headed, all signs of anemia.  Just wondered what any of your thoughts are.  Thanks in advance!

[Trey]

"Interesting" is one term for your experience.  Others come to mind.  Glad you are doing OK.  Sorry about the dog.

You said you current RBC is 9.8 -- maybe it is .98 or something?  Normal is 4.2 - 5.7

I suppose you could say that anemia is hazardous.

This is another reason to look at reduced dosage of TKI drug after continuous PCRU.

[simone4]

Raegles, I am so sad to hear of your accident and the loss of your dog.

Could you try Gleevec again?  Maybe this time the rashes will not be so bad.

I had bad rashes as well with G., but my dosage was lowered to 300mg. and

although I am not PCRU, I am CCyR.  I'll take that, in fact.

My thoughts are that your RBC is not that low, but maybe Sprycel is

causing problems that need attention. Has you seen a cardiologist?

Maybe the blackout was not CML related.

I hope your leg heals, as well as all the other broken parts.

I wish you the best.

Simone