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#1 hannibellemo

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Posted 21 April 2013 - 07:14 AM

Yesterday, after a few days of denial, I admitted to myself that I am, once again, experiencing symptoms of pleural effusion - 11 months to the day after re-starting at 50 mg. I'll call for an x-ray tomorrow but I've stopped Sprycel as of today.

I'm very disappointed needless to say. Liver toxicity on Gleevec, pleural effusion on Sprycel. It sure would be nice to find a drug I could stick with. I wonder which one is next? I assume it will be Tasigna and a whole new set of side effects to get through.

Right now I feel about as gloomy as our weather!

Pat


Pat

 

"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>


#2 simone4

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Posted 21 April 2013 - 09:55 AM

Hi Pat,

Sorry you are experiencing this "mess" again.  I think one of the worse feelings we

can have is not being able to breathe well.  It consumes body and mind.

You are smart to stop the Sprycel now.

Good luck tomorrow.  Maybe the B. drug will

work. (I forgot how to spell it.).

Simone



#3 Barb@Anderson

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Posted 21 April 2013 - 10:58 AM

Hi Pat, I'm sorry you are having to go through this stuff.  I am on Gleevec and have shortness of breath.  My numbers have gone up steadyly since last November and I expect my onc to change my med to Sprycel when I go back next month.  After reading what you are experiencing, I don't know if I want to take this TKI or not.  have enough problems with Gleevec.  He's had me taking 400 mg Mon, Wed, and Fri and 200 the other days.  The 400 has me wiped out.  I fell "lousy" most of the time.  I was feeling really good most of the time on 200 a day but as he said my numbers were increasing so what do I do now?          

Hope you can find something that works for you.. Good luck and God Bless.



#4 hannibellemo

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Posted 21 April 2013 - 04:16 PM

Thanks, Simone! I had gotten to the point that I really didn't mind Sprycel, the reduce dose definitely helped.

Hope all is going well with you. I don't post very often anymore and I miss so much! 

Pat


Pat

 

"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>


#5 hannibellemo

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Posted 21 April 2013 - 04:24 PM

Hi, Barb,

It's funny but other than the liver issue my QOL on Gleevec was great. Of course, I learned not to stretch because of charlie horses I was absolutely shocked when I had to switch.

It took me quite awhile to adjust to Sprycel, but after 4-5 months I did, until the PE at 2.5 years. I think more people do well on Sprycel than not so I wouldn't let that scare you away from giving it a try.

Thanks for the well wishes!

Pat


Pat

 

"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>


#6 hannibellemo

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Posted 21 April 2013 - 04:43 PM

Billie,

When this whole think started about 10 days ago I thought I was just over reacting to you telling me you were on 50 mg. when you got your PE and letting anxiety get the better of me. Then I had no symptoms for the next several days and all of a sudden this past Wed. I got short of breath again and then fine on Thursday but back on Friday.

I will bet the x-ray will show just a blunting of the tip of my lung again like the first time. For some reason I can tell when anything interferes with my breathing. I blame it on being so out of shape.  My doc told me last time I shouldn't even be having symptoms with that little bit of fluid in my lungs. I didn't stop Sprycel until 2 weeks later and what a mistake that was. That's why I stopped today. I don't want to go through that again.

I even got my blood pressure and cholesterol under control because I read that could be a contributing factor. My HDL is 80 for pity's sake!

We can start something new together! Be sure and let us know how your appt. goes tomorrow.

You probably would get some relief from breast reduction surgery but I saw a friend in the hospital after hers and it looked like the most uncomfortable procedure ever! Of course, this was years ago and I'm sure they've improved things since then.

I am glad you got your butt back from Pittsburgh! That made me laugh!

Pat


Pat

 

"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>


#7 Susan61

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Posted 21 April 2013 - 07:02 PM

Hi Billie:  Even with all your going through you never lose your sense of humor.  I am 5'3", and surely do not need a fake butt, and was never endowed in the breast department.  I am so out of proportion,  I need to lose this weight that I have gained through the years, but I do wish you the best at Pittsburgh.

PAT:  I hope your not going through this again.  I am going through a very bad time with my allergies, and it gives me congestion and wheezing etc.  I constantly feel like I have cotton growing in my throat.  I guess I will find out what is going on with me after I get my Endoscopy.  The Endoscopy is to check for a Hernia, but there is so much more going on.  Maybe it is just allergies with what your feeling, but you do know your own body and how you felt with the last PE.

I really hope you and Billie do well with whatever you need to do.

Susan



#8 hannibellemo

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Posted 21 April 2013 - 08:57 PM

Susan,

You are always so kind to offer support even when you have so much going on in your own life! Thanks so much!

I don't know if this is true of all TKIs, but for Sprycel, at least, it has done a number on my upper respiratory system ( and my lower one, too evidently)  ; ) I had sinus surgery a year after I started it because of sinus problems I had never had before. It wouldn't surprise me if that is what is going on with you. Evidently the edema can be caused by several mechanisms and effect us in different ways. Sheer conjecture on my part, but it leads me to wonder.

Hope you learn something with your scope.

Pat


Pat

 

"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>


#9 Susan61

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Posted 21 April 2013 - 09:06 PM

Thanks Pat:  Your always so supportive also.  I know allergies can take a real toll on your whole body, and I never believed it until I really started to have so many problems.  Lets all just keep one in another in prayer as thats the best medicine of all.  Feel better!!

Susan



#10 Marnie

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Posted 21 April 2013 - 09:20 PM

Pat. . .sorry to hear about the PE.  I'm bummed for you that you may have to start thinking about switching to yet another TKI.  Best wishes and I hope your lungs clear up quickly.

Marnie



#11 hannibellemo

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Posted 22 April 2013 - 06:42 PM

Thanks, Marnie! I called my doc this morning to get in for an x-ray. He wants me to stay off Sprycel until he gets a chance to view it and I imagine confer with my Mayo doc. It's just very discouraging. I wish no one had ever said to me that "You've got the good leukemia - all you have to do is take a pill." Yeah, right!

Think Spring!

Pat


Pat

 

"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>





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