Jump to content


From JrsBoo to CarolineCookie!

  • Please log in to reply
3 replies to this topic

#1 CarolineCookie


    New Member

  • Members
  • Pip
  • 3 posts

Posted 13 July 2014 - 04:23 PM

Well, I used to be JRsBoo.  But then the new website came along..........and due to my TKIs I can no longer remember which email address I used.  


So I am reregistered with a new name: CarolineCookie.


I have been posting to Youtube a lot, and some of them are about the CML journey.  If you are interested the link to my channel is:  https://www.youtube....71hCoHQatSO3wMw.  


There is also just a bunch of goofy stuff on the channel as well.  But I know how excited I am every time I meet one of us, and I find it helpful to put a face with the posts.


And now a short update.  


I was on 100 mg sprycel for 2.5 years.  6 months on Ponatinib 15mg.  Then back to Sprycel at 50 mg then 20 mg.  


Recently had to stop the sprycel due to shortness of breath.  They found some pulmonary function had decreased, but not enough to stop the sprycel.  


I was given the option to stop all drugs and take my chances.  Or go back on sprycel 20 mg and see what happens.


I acknowledge that I was caught early (27K wbc), and my response deep and fast.  


I probably could stop taking the tkis.  probably.  But there is no real assurance that it won't come back.  


The research on stopping doesn't have "me" in the profile.  And I don't fit the profile of those that were able to stop, they are all on different drug for different length of time.


I am risk averse.


I waffled.  I debated.  I cried.  I didn't want to make this decision, what if I chose wrong????


I decided to go back on the sprycel, despite the severity of the side effects (yes, even at 20).  


Back to my couch, with pain and fatigue.  I could feel the fuzziness descend 20 minutes after taking the drug.  


I keep my fingers crossed that someone, somewhere is coming up with a definitive answer.  Until then, I am drugged.

#2 Trey


    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 13 July 2014 - 09:18 PM

Is talking to yourself using two different names a new TKI side effect?


Is that called Plural Delusion?

#3 hannibellemo


    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 14 July 2014 - 02:14 PM



Glad you're back, sorry that 20mg. is still hitting you so hard! Love the picture, now if I could just find one of me I like! I'm really not as furry as my avatar depicts!  :D





"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#4 Credmiston


    New Member

  • Members
  • Pip
  • 4 posts

Posted 26 July 2014 - 12:57 AM

Thanks Pat! As you can see, I had to get ANOTHER account. Sigh. This new sight looks slick, but is full of buggies. My husband took that pic as I was cooking. My favorite activity.


1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users