17 replies to this topic

[jessw333]

Hello! I have CML, and was doing ok up until the past month or so, my plateletes shot up (the only thing) and I am not responding to Gleevec as I should. Has anyone else had this problem? Just wondering. Good luck to you all....Jessica

[Susan61]

Hi Jessica:  I do not think that I have spoken to you.  When were you diagnosed, and how long have you been on Gleevec?  You might just need a higher dose.  That sometimes works before switching to another TKI.

I hope you do well with whatever they decide to do.

     I asked how long you are on Gleevec, because sometimes  if you just started the numbers can go up before they start to come down.

Susan

[jessw333]

Hi Susan! THanks for the response. I am new, just joined today. It is wonderful so far.

I have been on Gleevec for almost ten years...yikes! I have to be honest, I didnt take it very well the past few months, and it started to show in my CBC.

The only thing showing was my plateletes....1.5 million/risk for stroke for three weeks. Im on hydroxeua to control that...i think that is better now.

I dont have J2K, just more of the philadelphia chromosome...scared that it could turn into accelerated/is turning into it?

ANyways, think I just have to up my dosage and hope for the best!

What is your story?

[Susan61]

Hi Jess:  Welcome to our group, and your great response for so long.  I thought maybe you were new to Gleevec.  Most likely your on 400mg which is the basic dose for many of us.  If you go back into the archives you could probably find my story, but to make it short let me just say that I was diagnosed in 1998.  I did the Interferon with Ara-C Shots because Gleevec was not available then. It did not work for me, and Gleevec was in clinical trial just when I had no other things to try.  I was not a candidate for a BMT.  I started Gleevec in the trial which was STI-571 as you probably know anyhow in Oct. of 2000.  I have been PCRU since 2003.  That would be my other question.  Did you get to PCRU? because then I would be surprised if you lost your response after so long at PCRU.

     We have some great people on here who have been through it all, and we have some who can really get down to the bottom line for you with advice who study everything on CML constantly.  I have gotten answers better and more accurate on here than from doctors.  I am not saying do not listen to your Oncologist, but they are only human like us.

    My platelets run in the low range, but not in a danger zone.  I get blood work every 3 months for just routine check on my numbers etc.  Then I get my routine blood work along with a PCR test every 6 months, and I am due in 2 weeks for the PCR test.  I still get very nervous worrying about losing my response to Gleevec.  I think that is normal for all of us.  Share a little bit more if you would like.  Hope you get to know everybody on here.  We get new people everyday, some are new to posting, and others are just new to CML.

Happy New Year

Susan

[jessw333]

Thanks Susan. This has been great, and informative.

My story has been pretty lucky in the grand scheme of things. I have been on gleevec for almost ten years now and it has done wonders for me. Just a little nausea..always just the 400.  I found out I had CML, the month FDA approved it. It did wonders for me, as of now though, I may be rejecting it. BUt could be my fault for not taking it as i should. I dont know if its that or if my CML is going into a different phase. That worries me, but I have to be positive (something I have been struggling with). I heard positive thinking rules so much more than the diesese and I believe it, just hard to actually do it with the possible end results I am faced with. The "what ifs" drive me to this negative place....it is pretty hard some days. But at the same time, I have been blessed to live such a "normal" life the past ten years....time will tell I suppose. Seize the day!

[scuba]

Hi Jess,

Chances are that if you just return to taking Gleevec as you should and be "diligent" about it, you will return to where you were.

When you said you have not been taking it as you should - what do you mean?  Did you just stop taking it? - and if so for how long at a time?

Were you ever PCRu?

[Susan61]

Hi:  I am confused as to what you did.  Did you cut back on your dose or stop it because you felt you were on it for so long and maybe did not need it anymore.  Did you get to PCRU?  I do agree that positive thinking helps you in many ways, but it will not take over for a medication that you need.  I agree with Scuba, that if you have not been taking it to go back on it and see what kind of response you get.

I do not even want to cut back on my dose as long as it keeps doing its job.

Susan

[Dina]

Hope Gleevec has not stopped working for you, and even if it did,

there are two more drugs that you can always switched to,

am I right??? Anybody???

[markmendonca]

call tasgina they help me. my copayment was $2900.00 i called and filled out paper work and i pay $33 mail order.  Mark

[sarah1403989277]

ok dumb question whats a pcr test and what is pcru?

[Marnie]

Not a dumb question, but it is something you should know.  Polymerese Chain Reaction (hope I spelled it correctly) is a test they do to determine the level of BCR-Abl in your blood.  PCRu stands for PCR undetectible, which means the leukemic load is too small to be detected by the tools used (that's a good thing).  If you google PCR, you can get pretty good information about how the test is done on your blood.  You should be having this test every 3 months, and you should be sure to have the blood drawn early in the day and early in the week so that the sample does not degrade over the weekend.  The blood sample should be processed at the same lab each time, as results from different labs cannot be compared accurately.  The lab techs will put the blood sample in a lavendar topped vial for a PCR.  The results take about 2 weeks to come back, so you should schedule your PCR blood draw a couple of weeks before your oncologist appointment.

[sarah1403989277]

ok thats what i always call the special test cos it has to be sent off. so when i had my bone marrow it came back nuc ish 9q34[abl1x2]22q1 1.2 [bcrx3][con bcrx1][60/600]

abnormal fish result,positive for variant bcr-abl gene arrangement

wbc 2.8  rbc 3.27 hgb 12.6 plt 73 

any comments on this

i was on tasigna but i was just holding then tried sprycel for 5 days side effects way too hard on me any suggestions or comments please

this is scary sh**

[Marnie]

Hi, Sarah. . .scary stuff at first, but you learn that this is a disease that can be controlled and lived with.  Your PCR results will come back with a decimal or percent number.  You will need to look for a trend over time, typically 3 test results in a row; obviously a downward trend is what you want.  When I switched from Gleevec to Sprycel, I took a 5 day drug break and then did half dose of Sprycel for 5 days before starting on full dose.  My side effects were minimal with this approach.  Everyone is different.  Give it time. . .side effects typically subside somewhat.

Marnie

[scuba]

Sarah - 60 out of 600 cells (10%) were positive for CML. Your goal is to get that number to zero which puts you into cytogenetic remission (CCyR).

Based on your blood numbers - it does seem that the Sprycel is suppressing your normal cells (plt < 100; WBC < 3.5). It would be good to know your Neutrophil counts (reported as ANC or Neu). That number needs to be above 0.5 (absolute count).

You may be suceptible to myelosuppression at your stage of treatment. All TKI's can cause myelosuppression, but it seems Sprycel causes it more than others. Myelosuppression is when your normal blood making system does not make up the difference in cells killed off by the Sprycel. TKI drugs do seem to suppress the body's ability to make normal cells in addition to killing off the cancer cells.

Dr. Cortes at M.D. Anderson prefers to treat myelosuppression by lowering dose - first - rather than stopping drugs. He would stop you taking any drug until your counts recover - and then resume your treatment on a lower dose. In your case you might be able to reduce your dose first without having to stop.

In my case, I take 20mg of Sprycel each day. That is a very low dose. I can barely see the pill when I take it. And this dose has managed to put me into MMR (zero FISH and 0.1% PCR). And that was 3 months ago. I am about to have another PCR test on Monday.

I did start on 70mg of Sprycel, but it was too much for my system. I entered severe myelosuppression (ANC<1.0) and had to stop. It took 5 months for my counts to recover (but I believe there is a different reason for the long recovery not related to Sprycel) before I was re-started on 20mg. Once I was able to stay on 20mg. continuously, my PCR steadily dropped. No side affects that I feel - energy has returned. I feel completely normal. My normal blood levels, however, are still suppressed - just not as bad. ANC ~ 1.5 (normal is above 2.0).

Hope this helps.

[sarah1403989277]

hey scuba my neut is 42.3 neut auto 1.2

segemented neutrophilis 31% 

this tell u anything and to clear this up i was on tasigna not sprycel when this test was done

[markmendonca]

well thanks just so u no i can't read well and spell so for me Marnie thank you for helping me

[thomaskk]

Hi

How are you doing with your CML ? Are you still on Gleevec ?

Thomas