7 replies to this topic

[cpsn0000]

I have been told I am in Complete Hematological Remission with no evidence of CML detected under a microscope. My platelets continue to be a problem after 6 months of on and off again treatment. I am currently only taking 20mg of Sprycel and still awaiting the balance of my Bone Marrow Biopsy report to come back. I am currently on Neumega shots to increase my platelet production but still talking Stem Cell transplant if I can stablalize my platelet count with being on meds, even if they stay at 20,000 or 30,000.

Question is, from what I read about neumega, aren't you supposed to stop taking the chemo pill, take the shots for about 2 weeks worth to see any result and then re-start your chemo? Or can you take this medication while taking Sprycel?

Is it correct to still recommend Stem Cell transplant even though there has been no progression or any evidence of me having CML right now? Granted, I am still waiting for the balance of my BMB report to come back but was curious to see what Trey and company have to say on this?

[cpsn0000]

I also stopped Sprycel today since my platelet counts are 20,000 and only taking 2 shots of neumega thus far.

[Trey]

You are actually in Complete Cytogenetic Response (CCyR), which is better than CHR.

You asked:

"...aren't you supposed to  stop taking the chemo pill, take the shots for about 2 weeks worth to  see any result and then re-start your chemo?"

No.  We are not taking "chemo" so don't read the "chemo" directions.  Keep taking the Sprycel.

"Is  it correct to still recommend Stem Cell transplant even though there  has been no progression or any evidence of me having CML right now?"

I don't know why anyone would discuss transplant unless you have some specific high risk factor(s).  Ask the Onc why they are discussing transplant and make them be very, very, very specific (such as diagnosed in Blast Phase or something similar).  Otherwise tell them to go away.  We discussed this previously, and I suggested you scoff at them.  Have you scoffed at them?

http://community.lls.org/thread/9914

[cpsn0000]

I did blow up when messages kept being realyed from the doctor thru the nurse to me and things have been much better since then. I am at a loss right now. I know some people can take a year or longer for some counts to stop going up and down and hold steady low or steady high. If I had such a good response, still waiting on chromosome part, why walk me down Stem Cell transplant land? Granted on 20mg of Sprycel for 2 weeks and now off for at least a week or two before resuming..May increase me to 5 shots a week with Neumega to help increase platelet production. My platelet shows normal production according to marrow report...I feel like I am fighting a losing battle and should just except the fact that a stem cell is in my near future.

[cpsn0000]

Trey,

They were sying since I presented with a large spleen and mutiple symptoms I was graded on their scale for being in a medium to high risk to progress but after December's BMB and this current information, I have proven their little score table wrong. It is sad that only 20mg of Sprycel knocks my counts down but they want me to be able to stay on at least 50mg of Sprycel and be able to hold around 30,000 instead of always dropping off.

I mean, I was off 7 weeks from Tasigna, platelets came back up to 109 but went down two weeks later to the 80's. Spend 2 weeks on 20mg of Sprycel and down to 20,000....just crazy..I am hoping Neumega works for me....took 2 shots and no chane. Taking 4 more shots this coming week to see if it helps...

I may be better off getting like 5 or 6 bags of platets since Sprycel doesn't attack normal cells.....instead of getting only 1 bag...

[Trey]

Those little "risk score" thingys are mostly out-dated, out-moded, and out-housed.

[Tedsey]

I hold at PLT 20,000 on 100mg Sprycel (with occasional fluctuations upward).  Why do your oncs want 30K?  Have you shown any signs of bleeding?  Glad to hear Trey scoff at the score tables.  The oncs I have seen are hard-core believers in them (one onc was in practice 3 years and one over 30).  I was told by both I am at high risk to progress.  I would like to thumb my nose, but I am only 18 months in.  Don't have enough years to be so bold.

Have you gone below 20,000 or do you just stay in that range?  I have never been given a PLT transfusion or Neumega.  I hope things go well for you and you are able to stay on the Sprycel.

Teds    

[cpsn0000]

Tedsey,

Thank you for your response. They would just like t see my hold around 20,000-30,000 for platelets with staying on the medication and not keep coming off. I don't think Neumega will do anything and will most likely get my 3rd platelet transfusion tomorrow or the next day...I will keep you posted.