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Switching to Tasigna


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#1 jcastillo

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Posted 03 January 2013 - 03:53 PM

Hi everybody! This is my first time posting here. I was diagnosed in 2006 with CML. Started treatment with Gleevec but the side effects were horrible. Since 2009 I've been taking Sprycel. I came out of remission once in 2010 and my oncologist upped the dose from 50mg to 100mg and I was good. About 2 to 3 months ago I've been having some serious nasuea and stomach pain so my oncologist did a special test. When it came back he said my WBC was normal (9k) but my CML cause was still there. He showed me a chart on how it works and everything and recomended I switch to Tasigna. I trust my oncologist blindly, I said whatever you think is necessary I'll do. But, after I got home I researched Tasigna. Now, I know all these type of drugs, specially these new ones, come with a certain cardiac risk. But Tasigna seems the most prone to and the most warned about from the ones. I've always been a bit of a hypochondriac, heck,  writing this aches my chest. But when it comes to my heart, I panic a bit more. I recently had an irregular heart beat to which I went to Northwestern for. I had a series of test, and everything came back normal. They did an ECG a topo to check for any heart damage and the only they came back with was low pottasium level which could've caused my irregular heart beat. I started to eat healthier since, and also exercise more. I lost some weight. Got my blood pressure down and I'm doing great health and cardiac wise. My heart can go as low as 60 bpm now which for me, is incredible, I've always, up until 3 months ago, consumed high sodium foods and lots of red meat. I've stopped all that since I started reading more about the cardiac side effects of all these treatments. Im a bit worried about Tasigna. What are your expierences for those taking it now?

Thanks guys!



#2 Lori's okay

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Posted 04 January 2013 - 12:54 AM

Hi, sorry you are here but glad you found a good forum.

You've been at this a lot longer than I have, I'm just 1 year into it but T is the only drug I've taken.  I had to have an EKG and Echo before starting and a week after.  Then prior to each 3 month visit I get an EKG.  All have been normal.  The issue with Tasigna and heart is rare and if it is going to show up it supposedly happens early in the treatment so that I just don't worry about that part much any more.  You do have to watch the eating schedule as having food in that 2hour before and hour after dose window is said to increase the blood levels of the drug. 

I hope your treatment goes well.  Congrats on all the positive changes you've made. 

Lori


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#3 cam_kris

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Posted 05 January 2013 - 04:45 PM

Hi jcastillo!

I was dx on March 26th of this year with CML.  I started tasgina april 8th.  I had an ekg every week for the first three
weeks and then nothing since.  I feel great!  I have a hard time believing I have leukema!!  Tasgina has been nothing but
good for me.  "so far"   I guess it can change at anytime but for right now, it treats me right!!

the only thing that i did get was a rash, and that lead to a complete body rash but due to myself not going in right away and getting the meds needed ... it would of never got to that point. 

at one point my Liver enzymes went up for about 3 weeks but came down just as fast

I have no side effects at all.  yes, I am tired more now but that is from the cml it's self but even that is getting better.  I know each drug has there faults but I am justs telling you my experiences with it.

my test results have all been great as well.  I achieved Major Molecuar Response at my 7 month check up!  I am sure hoping at my January check up it will complete.  I know i am hoping for a bit too much here

but a person can at least hope for it!!   I was scared too of tasgina but I was very scared actually a basket case when i was told i had cancer!!!!  so when given the choices of the drugs,  i just thought,  I am this deep might as

well go all the way, Plus my dr really wanted me on tasgina. and plus from what i have been reading, as far as others having horrible side effects... it was a great choice.

I wish you the best of luck with your choice and hoping for the very best outcome for you!!  But  again, from my experience... tasgina Definitely was the way to go!

another thing , I was told that the 2 hours before and 1 hour after eatting was the most important thing you need to watch for Plus NO grapefruit at all.  Other then that, its a breeze!

Let me know what you choose to do and if you did go on tasgina, how it is working for you!!

Take Care!!

Kris



#4 jcastillo

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Posted 11 January 2013 - 04:13 PM

Thank you so much for the responses guys. my Onc still has me on Sprycel because the insurance co. has not yet approved my Tasigna. But you guys response has put me at ease a little bit. I am still working out 3 o 4 times a week and I feel great. I also started a low dose aspirin regimine on my own. I see my doctor tomorrow hipefull he won't take me off it. I feel safer taken it. And you Kris, you are right, we've aleady been thru a lot. Might as well go in deep. When I was diagnosed I was shock as well. Took a while to accept it. Still hope and pray everyday that it doesn't come back. I have to kids to raise and to get thru college to walk down the isle and grankids to babysit! I'll keep you posted.

Sorry it took so long to respond I thought maybe when somebody would respond I would get an email or something. So I thought nobody responded.






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