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Newly diognosed with CML and taking the Tasigna Please HELP

Started by Dina , Oct 09 2011 06:51 PM

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32 replies to this topic

#21 Dina

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Posted 10 October 2011 - 02:24 PM

Ha Ha Ha you really made me laugh this time. Thank you. I love that show and used to watch it all the time.

It's probably just the bad luck and some freak occurance, lucky us.

My doc told me: if you didn't eat healthy you could get and be suffering form the diabities, cholesterol and plus the CML,

so think about it.

But I have to admit it, no matter how scared, shocked and frustruated I am about the whole thing,

I really do feel confident about the future. Something is telling me if I was that unlucky to get this very rare disease maybe

I will be that lucky to witnes a possible cure or a near cure in the future.

I'm so thankful for the medicine we have today and so greatful for the scientist and the doctors with their discoveries that resulted

with the medicine so we can control our disease.

I just can't help but not wonder, why, what have I done wrong, how long I still have left, is Tasigna right medicine for me????

Guess I will newer know the answer on most of my questions.

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#22 Lizzybee

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Posted 10 October 2011 - 02:41 PM

I have a family history of heart disease (but not the type that Tasigna causes), so I was concerned that I would imagine heart problems on Tasigna. My onc told me that the specific problem that Tasigna causes is not something that I would be able to feel. So I know that if I feel a palpitation or something, it is not related to the QT syndrome that Tasigna causes. I was glad to know that, because otherwise I'd have probably been calling my onc weekly imagining that I was dying of a Tasigna-caused heart problem. :-)

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#23 Dina

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Posted 10 October 2011 - 03:45 PM

Hi Lizzy thanks for you comment.

How long have you been on the tasigna??

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#24 Lizzybee

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Posted 10 October 2011 - 08:19 PM

I started on July 12, so about 3 months.

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#25 MDeRosia

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Posted 10 October 2011 - 09:14 PM

I am a bit dismayed. I was doing so well on Tasigna. Started treatment 8/3/2011 - Tasigna got the WBCs in line fast.........then out of nowhere, my liver numbers skyrocketed. They put me on 1/2 dose and numbers continued to rise...sounds l;ike they will be changing me to Sprycel.

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#26 Dina

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Posted 10 October 2011 - 09:19 PM

Hey Lizzy, is Tasigna your first treatment?

Sorry to hear that Rosia. Hope Sprycel is going to work for you this time.

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#27 Guest_billronm_*

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Posted 10 October 2011 - 10:50 PM

Dear Dina,

I'm so sorry you have to join us but welcome to our site. There are so many side effects to tki's minor ones really but terrifying to us so we all understand what you are going through. Everything Trey and Lucky say are right I would trust their dx above some oncs.The fact that your doctor ran all those tests and your heart is fine shows he is a very good doctor. I have a very close relationship with my pcp so she also gets the results of any other tests we get. Sometimes I get overwhelmed with everything just like you are now. Just call your pcp and she can look at your test results and reassure you that they are okay and if there is any doubt they will send you to another cardiologist etc if they think they should. Just hearing that from someone you know and trust will really help you adjust. I go through the same thing I get a full cardio workup every year and when I get palpitations or any other wierd feeling I remind myself that I just passed every test and it's only anxiety. If I still have doubts I call my pcp.But so far I just remind myself that my heart is okay. And eventually they stop. I have had cml 4 years now with no problems I was on Gleevac but I had gi issues from a previous condition and now I'm on Sprycel and doing fine. Our bodies have to adjust to these new meds It's so hard for all of us to know if what we feel is a side effect or nerves. Just trust your instincts and stay here with us on this site and we will all help you through the rough times because we all have been through them. And we all need your support because we get pretty stressed out to.

Sincerely Billie

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#28 Dina

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Posted 12 October 2011 - 12:09 PM

Thank You Billie.

I also want to thank everyone who has responded so far.

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#29 Lizzybee

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Posted 12 October 2011 - 03:39 PM

Dina,

Tasigna is my first treatment unless you count 5 days of Hydrea (chemo) to get my wbc knocked down fast. They were 317k when I was diagnosed.

My husband read an article on the internet that said the latest studies are showing that the long term prognosis might be better when Tasigna or Sprycel is used as the front line treatment instead of Gleevec. It's like bringing out the big guns first.

Elizabeth

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#30 Dina

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Posted 12 October 2011 - 04:34 PM

Yeah my husband is pro Tasigna as well, I hope both of them are right.

How old are you Elizabeth? I'm 36.

And how are you feeling so far?

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#31 Lizzybee

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Posted 12 October 2011 - 08:31 PM

I'm 47. I am still having ups and downs. I'm feeling good this week. Some weeks, I am just tired.

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#32 Guest_billronm_*

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Posted 12 October 2011 - 10:23 PM

Dear MDR,

Boy it isn't bad enough to find out you have cml but then have your liver numbers rise that's downright nasty. You haven't had enough time to even absorb the fact you have cml.Then Tasigma giving you problems sometimes it seems like we can't get a break one thing after another.But you will be fine we all respond to the meds differently.I'm 4 years since dx, I took Gleevac for over 3 years then took a 5 week break and started on Sprycel. What a relief my stomache just couldn't handle the gi issues I already had stomache problems throw in some Gleevac and a porta potty and I was good to go. Just not very far. My onc wanted to put me on Tasigma but I said no. I could never be able to keep up with the schedule. I'm on other meds for a different problem and trying to squeeze Tasigma in between all those other pills no way. In the last few weeks I found out I have high blood pressure I'm on 2 different bp meds so thats 3 more pills a day.

I've been on Sprycel less than a year and it agrees with me so much more than G. The first 2 weeks I had a nasty headache but it eased up around the third week, and you can take it anytime of the day with or without food and my blood work is good so I'm glad I switched from Gleevac. It's always scary changing meds but I think you'll like S much better if you go on it. Geez you still haven't had time to accept anything and now this.But once your body adjusts to the meds you might have some fatigue or not but basically your life will go on the way it was. Cml is not cureable but it can be controlled for many years the docs tell me old age will get you first. I'm old. They are so close to a cure and a couple new meds with less side effects it could happen anyday.

So take care I won't say don't worry but try to get on the board occasionlly you'll find so much support and information it will really ease your mind. I know it helped me a lot.Billie