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Getting ready to start a new TKI. Bummed


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#1 Darlene_Jack

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Posted 29 January 2015 - 09:53 PM

Well I was on sprycel for a year n a half. Developed boarder line pulmonary htn. Was taken of. Sprycel in September. My PCR went up n I have to restart. I was hoping that maybe I would be one of the lucky ones n stay off forever. Guess not. I go Tuesday to find out which TKI I start. Anger n depression has set in. Just want to be normal. Feel good.
One breath at a time

Darlene jack...

#2 Marnie

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Posted 29 January 2015 - 11:00 PM

Hang in there, Darlene.  I'm pretty much in the same boat.  I don't think I'll ever be off TKIs.  Oh well.  Keep plugging away and put your emotional energy into something you enjoy.  It's not worth wasting time or energy on something you can't control.

 

Marnie



#3 gerry

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Posted 29 January 2015 - 11:25 PM

Hi Darlene,

Hopefully the new TKI will treat you better. :)



#4 chriskuo

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Posted 30 January 2015 - 04:46 AM

Having a problem with Gleevec is not a cause for concern. You have multiple options and almost surely at least 1 of them will treat you better.

#5 Darlene_Jack

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Posted 30 January 2015 - 12:32 PM

I'm sure things will be "normal" again. Back to reality I guess. I did enjoy the lady 4 months off of sprycel. Thanks for the support. This is a great place to come. Take care all
One breath at a time

Darlene jack...

#6 Darlene_Jack

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Posted 30 January 2015 - 12:33 PM

Darn spell check. Lol. Meant last 4 months off of sprycel
One breath at a time

Darlene jack...

#7 pammartin

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Posted 30 January 2015 - 06:12 PM

Spell check has become my greatest advisory. Proof reading has become a necessity.

Last year I drove a school van. Waiting to pick up the elementary kids, I often received a text from a mother who picked up her son. My phone jingled and the text message said, 'I am going to get pregnant, I will be at the side door of the school.' After a few minutes of enjoying the laugh I sent back to the mom, 'Ok, but don't you think you should pick some place a little more private?' Almost a year later she still apologizes and I am still laughing.

#8 Marnie

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Posted 30 January 2015 - 06:18 PM

I had forgotten that story, Pam.  I got another chuckle out of it.  Maybe that's a bonus to getting old.  It's just as funny the second time around because you already forgot about the first time.



#9 ritan/

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Posted 01 February 2015 - 11:10 AM

were you undetectable when they took you off? if not, the relapse was expected and wouldn't necessarily later prevent them from trying a stopping of treatment after 2 years undetectable.



#10 Darlene_Jack

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Posted 16 February 2015 - 03:09 PM

I was at 0% PCR. Was enjoying it. Now back up. I am getting ready to start Bosutinib. It been out since 2012. Is anyone else on this mes. Thanks again for all the positive words. Your a great group.
One breath at a time

Darlene jack...

#11 gerry

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Posted 16 February 2015 - 07:57 PM

Hi Darlene,

Not sure how long you were 0%PCR. For most of us that have stopped you need to be at least two years PCRU before stopping. Hopefully the Bosutinib works for you and knocks you down to negative quickly and you can have a go at stopping after a couple of years of PCRU.



#12 Darlene_Jack

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Posted 17 February 2015 - 11:42 AM

Hi Gerry,

 

I was only 0% PCR for about a year.  I was just really hopeful that I would stay that way, Its ok, im gearing up for round 2. I will update you all on Bosutinib.  Sounds like there isn't a whole lot of people on this one.  I got a response from 2 people that take this one.  They were very helpful.  Take care all and thanks for the positive words


One breath at a time

Darlene jack...




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