Jump to content


Photo

Well, damn...off Sprycel until pleural effusion resolves


  • Please log in to reply
31 replies to this topic

#21 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 15 March 2012 - 01:36 PM

Hi Pat,

Really sorry to hear about your PE and hope it clears up soon.  Are you sure that guy was a doctor?  Tramadol is one of the most popular painkillers for pets.

Enjoy the drug break and even if your onc doesn't want to cut the dose too much long term,  I'd definitely think about starting with a few days on 20mg to try to avoid a repeat of the horrendous start you had last time.



#22 BethG

BethG

    New Member

  • Members
  • Pip
  • 4 posts

Posted 15 March 2012 - 03:08 PM

Hi Pat,

It is definitely "uncomfortable"....Yes, managing it is all about food (and nothing delicious)...

I need to pop over to Jerry's site. I never go there, but it might be a good place to see how others are doing on ponatinib. In a lot of ways, the side effects are so much better than the earlier drugs--especially the lack of brain fog! Giving that up has been a huge plus. But, it does have other effects on the body for sure. It is still mind boggling to me that I am having a great response at 30mg!

I meant to also say how exciting for you to meet with PhilB in person (The Man, The Myth, The Legend)! I can imagine what fun you had getting together...I hope everyone behaved! lol

Take care,

Beth



#23 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 15 March 2012 - 10:38 PM

Hi Pat:  Been trying to catch up on all the postings, and was so sorry to hear about your PE.  Hope it resolves soon so you can go back onto your Sprycel.  My mother also took Tramadol for back pain, and she complained about the Constipation also.  She said it did not help her pain, but she also is 86 years old with severe problems.

Your always so supportive to everyone else, and praying that you can start feeling better real soon.  Enjoy your break if you can from the Sprycel.

Susan



#24 td1961

td1961

    New Member

  • Members
  • Pip
  • 0 posts

Posted 16 March 2012 - 08:43 AM

Pat,

I wouldn't be in too big of a hurry to get back on the sprycel if I were you! Let time be on your side. I was off sprycel twice in the last year for a month each time with PE issues as you know. It took the entire 30 days without sprycel for them to resolve. I had no issues with restarting like I did when I first started the med, but I started back in slowly with a half dose for a few days to week. Sprycel is a very strong TKI and seems to hold its punch for a few weeks, months, or however long depending on the individual. Just look at Leah's mileage on her sprycel battle. Or maybe its because I was on high dose gleevec for six years and then sprycel for 2 and half? Must have gotten some CML killing done with all that money! Har! At any rate, my pcr numbers were still around a 4 log reduction after the hiatus so I wouldn't worry about losing your counts. The important thing is to see if you tame the dragon?! Even on 20 mg per day, I could not get the PE and water retention issues (and PAH) to go away and today, I start tasigna. I have mixed emotions about that but hoping for the best. I'll probably start on a half dose with it for a couple weeks until I get used to it. Rather to do that than hit a brick wall in the dark first thing right off the bat! We went to HSA med plan at work and the last scare was when Welldyne quoted $22K for my part of the three month tasigna supply! I must say that I was more worried about having a MI than a PE right then!!! Har! But the number crunchers worked it and got it down to about $1700 for the copay and that kills my deductible for the rest of the year. So, I can breath again! Just take it easy and enjoy your med break. You deserve it after all the time you've been in bondage to it. Here's hoping that your lower dose will work or at least bypass some time until another TKI rolls out. Meanwhile, I'll be doing research on the new normal -- tasigna. Everything you wanted to know but was afraid to ask...

Tracy



#25 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 16 March 2012 - 09:54 AM

Oh Pat, I am so sad hear about the PE.  That totally sucks.  Hope this all resolves real quickly and you can go on a lower dose successfully. 

Good health to you!

Tes 



#26 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 16 March 2012 - 10:00 AM

Michael,

I am so happy to hear you reached MMR!  And on 20mg.  Awesome.  However, the lower dose may not be the case for all.  I have been on 100mg Sprycel since August 2010, and I am still not MMR.  Either I got a bad case of CML and it will progress (AND it is truly chronic since it has been almost 2 yrs on S), or I am really and truly a slug (fingers crossed).  I think 140mg would actually work best for me, but no one would put me on it due to almost everyone getting PE at that dose.  Wish I could do a lowered dose.  Maybe the mouth sores would let up and my PLT would get above 30K.  Oh well...

Pat, sorry to hijack!

All the best,

Teds



#27 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 16 March 2012 - 11:25 AM

Teds, you can hijack whenever you want!

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>


#28 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 16 March 2012 - 11:29 AM

Sorry, Beth, I was trying to be kind. From what I hear pancreatitis makes you feel like sh**! I'd rather have this damn PE, I think, and that's pretty bad! That's all I remember my friend telling me, they wouldn't let her eat anything for a week! She also said she didn't feel like eating anything but I almost can't imagine that!

Are they giving you anything for it or are you just waiting for it to "resolve" like me?

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>


#29 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 16 March 2012 - 11:30 AM

Pam,

Thanks for the post. Ironic isn't it that I was the one freaking out because you were on 140 mg of Sprycel and I'm the one who gets the PE at 100 mg!

Hope you are doing well.

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>


#30 BethG

BethG

    New Member

  • Members
  • Pip
  • 4 posts

Posted 16 March 2012 - 11:33 AM

Pat,

Well, I've earned myself another drug holiday. I finally broke down and e-mailed Dr. S at UCSF....I have an appt with my GP in about 1/2 hour to get to the bottom of this. I really wanted to avoid having to take a break!

How are you feeling since you've been off Sprycel? Can you already tell the difference? In the past, I could almost immediately feel the drug lift from my body...

BethG



#31 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 16 March 2012 - 11:39 AM

Beth,

Be sure and let me know how the appointment goes, I hope this is an easy fix for you. (is there really such a thing?)

I still feel so crappy from the PE that I'm not enjoying the experience of being of Sprycel yet!

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>


#32 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 March 2012 - 02:10 AM

Hi Teds,

Have you thought about taking the Curcumin as well - appears to be working well in Michael's case. I've even started taking it, will get PCR test next month so will see how it works with Gleevec.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users