18 replies to this topic

[Mobirdies]

I have been taking gleevec for 14 months.  I have low platelets and my white cells have been normal.  My Onc. scheduled an appt. for next week to discuss different treatment options.  He stated that while my blood work counts are stable the genetic tests showed no further decrease in the leukemic cells.  I thought I was doing ok on gleevec and now I'm scared about going to a new medication and having to deal with new side effects and don't know if it will work better for me.

Has anyone experienced a similar situation?  Any feedback you can provide will be greatly appreciated!

[TeddyB]

Hello.

I am on Gleevec myself, 9 months now.

What are your numbers? (Cytogenetic and PCR)

I think it would be easier to answer if you share your results.

Many here have switched drugs, so im sure you will have some answers soon. Some of the ones i read about have had a reduction in side effects when switching so keep your chin up

Teddy.

[Marnie]

Hi, Mobirdies. . .

I was on Gleevec for about a year and a half until my numbers flattened out and then started rising a bit.  I switched to Sprycel (100 mg), and am very happy with the switch.  My numbers immediately dropped significantly.  About a year after switching, I reached PCRu (although I had some issues with using different labs for 3 consecutive PCR tests before that, so it's hard to say exactly how long it took to reach PCRu. . .insurance ARGGGHHH).  My numbers bounced up slightly the next test (.001), and the next two tests (just got the results this week on the latest one) have been .000.  Sprycel was definitely a great choice for me.

I feel a LOT better on Sprycel than I did on Gleevec.  More energy, no GI issues.  The pill is easy to take, with no food restrictions.  My skin is better on Sprycel.  Fatigue is better. 

I was nervous about switching, especially since the 2nd generation drugs are so much stronger than Gleevec, and can have some scary side effects.  Everyone reacts to the TKIs differently and you have to make your own decision.  But I'm sure glad that I made the switch.  God luck on your decision.

Marnie

[jjg]

don't know if it will work better for me.

It's true that you don't know that it will work better for you but if Glivec isn't working than the next drug will not work worse. It's hard to say too much more without knowing your PCR or FISH results. Has anybody said anything about mutation testing?

I'm scared about going to a new medication and having to deal with new side effects

In a population of patients there will always be some horror stories and it is true that the early weeks are often hard on a new treatment. However, I hear that mostly people are finding the newer drugs easier than glivec (the scientific literature backs this up) and certainly in my case I've found tasigna just so so much better. I had accepted a whole lot of crap changes to my life on glivec; of course you do because having a life is such a big deal and a relatively normal life at that. On tasigna I have so much more of a life. I was never actually scared of changing. Like jumping off the 10m diving platform. I just wanted to jump and while I was waiting to jump I was making myself enjoy the view rather than worry about how far down it is.

For me the worst day on Tasigna was like a normal day on 600 glivec and there were never days that good on 800 glivec. At 3 months on tasigna my biggest worry is that I feel so normal I might forget to take it. So I hope my experiences make you feel a little more relaxed about possible side effects. If you are given the option to to try a higher dose of glivec verses a 2nd generation TKI I'd run screaming towards the 2nd generation TKI.

[Mobirdies]

Thanks TeddyB, 

Here are my numbers I got from my doc.  I'm still not too familiar with all the numbers.

Abnormal Chromosome is 48% of the cells (it was 32% three months ago).  The molecular studies showed a value of 1.0538( it was 1.0009 previously). I guess these results are not meeting the one year goal?

Thanks again for your feedback!

Mo

[Mobirdies]

Thanks for the feedback Marnie - congratulation on reaching PCRu.

[Mobirdies]

I'm glad you are doing great.  I appreciate your feedback.  It's nice to have this platform I don't feel like I'm the only one with this illness!

[chriskuo]

Do you know your log reduction?

[TeddyB]

It would seem your cytogenetic response has gone from 32% to 48%, if so then a switch or increased dosage is the right thing to do. I would personaly go for a switch if i had the chance.

Have you had a mutations test?

[CallMeLucky]

You're results are going in wrong direction, better to switch, side effects should be less on newer drugs.  Given low platelets Tasigna is probably your best bet.

[Mobirdies]

Hi TeddyB,

Sorry for the late response but I just now got my blood test result and my doctor stated that the genetics test show mutations.  I have a doctor's appt. tomorrow to talk about treatment options.  I hope whatever medicine he gives me works for me.

[Mobirdies]

Hi JJG,

I just received my result from my genetics test and my doctor stated that I had no mutations. So I hope that was a good news.

[CallMeLucky]

You need to clarify - do you have a mutation or not?

Either way the good news is that with the release of ponatinib there are no known mutations that we do not have a drug for.  Of course there are no guarantees, but this is the best time given the drug choices to be treating CML.

[Trey]

You should not be afraid to switch drugs.  It is necessary and they are not like friends requiring loyalty.  The Gleevec is not working well enough, so switch to another and you will most likely see a better response. 

[Mobirdies]

Thanks everyone!

@CallMeeLucky - Just to clarify I had no mutations and today I had a doctor's appt. and he prescribed Sprycel. So here I go trying a new drug. 

@Trey - I hope you're right - I'll give you an update in 3 months.

[jjg]

Good news on the mutations. Hope you and sprycel get on well together!

[Marnie]

Mobirdies. . .Good luck. . .Sprycel has been very good to me.  Can't speak highly enough about it.  Perhaps you've already started it, but I would recommend starting at half dose (50 mg) for 5 days or so, and then going to full dosage (if that is what your doc is prescribing).  That's what I did, and I had no Sprycel headache (which I had heard about and was worried about).  My numbers have been great with Sprycel.

I do seem to be having some skin issues. . .rashy, itchy patches, driving me crazy. . .and (your avatar looks female) menstrual cycle issues. . .neither proven to be related to Sprycel, or other TKIs, and poo-pooed by my doc, but which I think are directly related to the meds. 

Marnie

[Mayra]

Marnie, I'm on Sprycel and have the same issues you do. 

[Mobirdies]

Thank you Marnie for the feedback - I will pick up my Sprycel on Wednesday, the hospital I go to were out of stock??