13 replies to this topic

[GermanGirlxoxo]

Hey ya'll, So I was diagnosed with CML last year and have been through hell and back with different treatments to try and get it under control. Tasigna is my last option to see if works before I get a BMT. I already have meetings with BMT doctor and stuff to get things set up but I have my fingers crossed that this Tasigna will work since none of the other TKI's have for me and I have NO mutations. They pretty much have no idea why my body is not responding . My concern is side effects anyone has on tasigna.. I am about to start taking it in about two days and from what I've read about it and what my doctor has told me about it I'm not going to lie I'm freaked out. I had an ECG and it came back normal and will have another after a week of being on drug but like any of ya'll on it what kinda side effects do you have? I know drug companies have to write everything someone claims to get so I'm hoping all these things listed arn't realistically going to happen but with the luck i've had who knows... Any in sight would be amazing and thank you in advance!!

xoxo

[Trey]

Mostly, Tasigna had some apparent bad luck during the clinical trials that forced the QT interval warning.  I have not heard of anyone having serious QT interval heart problems as a direct result of Tasigna.  Otherwise, many people have fewer side effects with Tasigna than other drugs.  It is a very individual experience with these three CML drugs. 

We would be interested in your story about how you got to this point, including CML Phase at diagnosis, any high risk factors, and how you responded (or failed to respond) to Gleevec and Sprycel. 

[GermanGirlxoxo]

Hi Trey thank you for responding.. My story is very long and aggervating but I will give you the gists of it. I was originally diagnosed with CML and put on Gleevec, I didn't respond to treatment and my platelettes went sky rocketting in the 2 millions.  After 3 months they did another biopsy to check and see if I was having any mutations. I ended up getting placed into the hospital due to negative reaction to sprycel. My numbers dropped I was having constant blood transfusions and having heart issues. It's been a long year battle for myself and my family trying to help me through all side effects and hospital stays. Since I am non responding to treatment and a "young age" my specalist said we're going to end up doing a BMT. I just feel like I'm at my whits end and don't know what to expect with this new drug...

[Pinkbubbles9642]

: ( I'm so sorry for everything you are going through. my side effects so far have been : kind of a sunburn type feeling rash, bone pain and fatigue. I really hope this med works for both of us we are kind of going through the same thing but I never was able to take sprycel.. Good luck with this and if you need anyone to talk to message me we can fight together : )

[GerryL]

Hi GermanGirl.

My doc was recommending switching from Gleevec to Tasigna if I felt the side effects from the Gleevec were getting the better of me.

Two reasons I haven't are that - I responded very well to the Gleevec and Tasigna can cause rashes. I get enough rashes from Gleevec, so didn't want to risk any more.

There are a number of people on the discussion board who are taking Tasigna with minimal side effects.

Good luck with the Tasigna - hopefully it will be the drug for you.

[GermanGirlxoxo]

Thanks for the response MJ, so your side effects are pretty much the same as all the other TKI's nothing more extream. That's kinda nice to know. I'm sorry you are going through a hard time as well, we can def fight together and i'm here for you as well!

[GermanGirlxoxo]

I wish Gleevec would have worked for me :-/... I am glad that you are responding well to it! Rock on if it's working why switch ya know. thanks for the luck wishes I'm hoping it works too but after everything I've gone through I'm on the pestimistic side but trying to be hopeful.  :-D

[Trey]

Here are some thoughts from your inputs:

Gleevec may not have worked well enough, but the platelets can go up for a while even while taking the TKI drugs.  It can take a few months for the platelets to settle down and drop to normal range. 

It appears the Sprycel side effects were the main issue for that drug.  Some here take very low dosage (down to 20mg per day) since the side effects are more significant for them, and that low dosage has worked well against the CML.  A much lower dosage of Sprycel could be an option.  (What was the reaction that led to being hospitalized?)

You said they checked for "mutations".  There are two types, one is chromosome mutation, and the other in kinase mutation.  It is the kinase mutation that can prevent the TKI drug from working.  Are you sure they did the kinase mutation test?

Here is a posting on Transplant:

http://community.lls.../message/101557

A more detailed story could help others who go through what you have experienced, if you want to provide more information. 

[KerriD]

My Doctor started me on Tasigna at DX in August 2011.  I had some stomach issues, fatigue and itchy skin at first.  Those side effects have lessened.  I have also had hair loss....luckily I had a lot of hair to start with....it is much thinner now. I feel very forunate that my Onc put me on Tasigna. I have had great results with it.  My last PCR test on 1/2/2012 showed that the CML is undectable in my blood.  

I hope this eases some of your anxiety about the Tasigna.    Please try to remain hopeful!

Good Luck to you

[GermanGirlxoxo]

Thank you KeriD, does ease my tension a little bit but congrats on the PCR test how awesome is that for you hun!!!

[GermanGirlxoxo]

thank you Trey

[matt92711]

Tasigna is great! (relatively to being well and not needing to take any drugs of course).

I wonder why the TKI was not working if it is as you say there were no mutations. Hopefully the Tasigna will work for you. Don't worry about the QT prolongation as that seems to be something that has not been an issue since the early trials. Also, Tasigna whatever the risks (and I think they are minimal) is way better than going through a BMT.

Wishing you the best.

[WoofWoof]

I  switched to Tasigna because of the side effects I was suffering from Gleevec. Tasigna is much more managable and with proper monitoring of your cardio, should not be a problem. As Trey says, Tasigna got a bum rap for the QT prolongation during testing. My opinion is for you to try Tasigna I'm sure it would be much less invasive then a BMT.

[grannyd]

Hi, hope you do well on tasigna. I have been on tasigna since first diagnosed. Started Feb. 1st of 2010 and it has been great!! Only side effect for me has been fatigue, which I think goes with all the TKI's--I reached CMR in 5 months-----I also follow the eating rules of no food 2 hours before & 1 hour after taking tasigna, I think that is the biggest factor for most people worried about the QT. Prayers to you that you will be able to take tasigna & it works for you!!! granny d