6 replies to this topic

[pammartin]

Ok my wise CML family, few questions for the latest developments.  Just quick recap so past reading is not needed, after two and half weeks of 140 Sprycel and 2000 mg of Hydrea daily, the platelets did come down, but boy they hit the lows along with the white count.  Last Monday they had risen to 100,000 and white count was just a tad below 500.  Today, one week later, platelets are 400,000, and white count is 450.  Trey, you will appreciate this, they finally told me to stop taking the allipurinol, they were just about a week late, I stopped it several days ago, I am still supposed to take aspirin, but they did reduce it to the baby, and not 2 full strength daily (stopped that several days ago also).  So, now that is all taken care of, I am to start the 140 Sprycel today, and return for blood work on Thursday, if the white count continues to go down, I am to visit oncologist office for shots, (3 times per week) for white count, I can't remember what the name of the med is for the life of me.  I know my situation has not been textbook from the beginning, but I am looking for advice from the people who might have already traveled this route, or one similar.  Or for that matter, anyone who has knowledge or opinion.  Has anyone went off Sprycel for almost three weeks and then returned to the drug, if so were the side effects as severe as the first round?  I am not looking forward to those railroad spikes being driven in my head.  It is, what is it, but this time I am going to make use of the xanax and ibuprofen instead of suffering because I am concerned with the liver. 

I pushed to restart the Sprycel at 100 mg, it didn't work before, but we are in a different ballgame now.  No one would budge.  Even oncologist office was a bit skeptical about the dosage because of my white count.  So bottom line is, Sprycel 140 mg, low dose aspirin, what does anyone/everyone think?

Thanks

[Trey]

Your blood count yo-yo is not such an unusual story to us.  It is actually fairly standard, especially for women, to have initial issues with low blood counts.  The wild card is that you took Hydroxyurea and Sprycel at the same time, which really drove your platelets down hard.  When you say your WBC is "450", I assume you mean your ANC is .450 so the Sprycel 140 is very likely too much for the re-start, but you will see soon enough. 

[pammartin]

Thanks Trey, I was driving when called with results, no place to pull over to jot info down.  I was just confused when they starting talking about platelets raising too quickly again, thought I was in for another 2 million or close mark.  The shots for jump starting white count, I apologize, still cannot remember the name, how effective are they, if it is possible to foresee the potential results?  If I had the 100 mg Sprycel, that would be what would go in my mouth, I wouldn't touch the 140 mg, but they have me frightened about the platelets, so I started the 140's this eve.  Sad that many others go through this yo-yo with blood counts, but comforting to hear it is not all that unusual.  Triple thanks!

[Trey]

Do what your Onc says.  You will be able to adjust as you go along.  The good news is driving the leukemic cell count down.  There is no exact science here.

[pammartin]

Thanks, I have resigned myself to the directions, hopefully tomorrow I will awake with little side effects and this yo yo can shorten it's string just a bit.  You are right, there is still good news, need to focus on that.

[pammartin]

Guess it's better than pain in the ass.