Advanced Member
Posted 18 May 2012 - 06:12 PM
Hi, all,
After 9+ long weeks I've got the go ahead to restart Sprycel at 50 mg. (down from 100mg.) My PCR went from .02 to 1.6 (IS) so I'll be glad to start kicking the dragon again! Please keep your fingers crossed for me that I can tolerate the 50mg. with no pleural effusion!
Have a great weekend!
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>
New Member
Posted 18 May 2012 - 07:20 PM
Hi Pat,
I saw your post and had to login and reply! Fingers crossed for you with this restart. Good luck with "re-entry"!!!
Hugs,
BethG
Member
Posted 18 May 2012 - 07:42 PM
Pat,
That is a long wait..congratulations on getting back in the fight...I know you were ready ! Your PCR will drop back down in no time..prayers for you that you have no more pleural effusions....! Janne
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Advanced Member
Posted 18 May 2012 - 07:45 PM
Fingers crossed for you, Pat. How long will you be on Sprycel before going in for another PCR?
All the best,
Marnie
Advanced Member
Posted 18 May 2012 - 07:47 PM
Hi Pat,
Wishing you, and all of us!, invincibility and perfect health. Let us know how it goes!
ChrisC
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
New Member
Posted 18 May 2012 - 07:47 PM
Hi Pat,
I wish you the best of luck with this restart!
I'm starting with Sprycel tomorrow. Until now I was with Gleevec. Not sure what to expect...
Actually this is the first time I write in one of this chats. I was diagnosed with CML almost 2 years ago and to tell the truth, until now, I wasnt very eager to read about the disease and talk with other people in the same situation. I have been very poitive all this time, but I guess I wasnt ready to learn more about it or share my experience. I guess tonight I feel like I would love to hear about other people's experience and I'm ready to learn more.
Any advice for me on the Sprycel.
Have a great night!
Mude
New Member
Posted 18 May 2012 - 08:11 PM
Wow, that was some bout of PE! Didn't realize you had been off TKI for that long. Hope the sprycel is good to you!
Did they say if it helped to do breathing exercises or anything like that to help prevent PE? When I had Pleurisy years ago, they had me taking deep breaths so many times an hour. Can't remember if that was for the PE or to get rid of the little bit of fluid in my lungs that they did not want to turn into pneumonia.
Traci
Advanced Member
Posted 18 May 2012 - 08:17 PM
Hi Pat: I will do better than cross my fingers. I will say a extra prayer for you to really do great with no obstacles to make you sick again. Keep us all updated, because we all care about you.
Susan
Advanced Member
Posted 18 May 2012 - 08:20 PM
Hi Mude:
Glad you joined in with us. We have a lot of people who have switched to Sprycel. I have always been on Gleevec, but no matter what TKI you are on there is always some side effect or question regarding different things. These drugs do different things to differnt people. You will be glad you joined us. Hope to hear from you again.
Susan
Advanced Member
Posted 18 May 2012 - 08:38 PM
Fingers, toes, and every other thing I can cross is crossed for you! Best of luck and NO pleural effusion!
New Member
Posted 18 May 2012 - 08:45 PM
Hi Pat,
I will be thinking of you this weekend and wishing you luck. Hopefully the 50mg of Sprycel will do the trick and you will have 0 side effects.
Hugs,
Judy
Advanced Member
Posted 18 May 2012 - 09:04 PM
Hi, Marnie,
Right now we're still thinking 3 months. I'll see how nervous I feel about it. I don't have an appt. to see my onc for another month.
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>
Advanced Member
Posted 18 May 2012 - 09:07 PM
BethG,
I'm so glad to hear from you; I've been wondering if your pancreatitis has resolved. (I certainly hope so 9 weeks would be a long time to suffer with that!)
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>
Advanced Member
Posted 18 May 2012 - 09:11 PM
Wow, I could have sworn I wrote to thank everyone for the good wishes and for having my back, but I'll be darned if I can find it! So, thanks, everyone!
Mude,
Welcome, you came to the right place for excellent information and fantastic support! Good luck with your first dose of Sprycel! It can be tougher the first few days/weeks than Gleevec or Tasigna for some and yet some say it is way easier for them. Whatever happens you can count on us for "tea and sympathy". Personally, I prefer wine when I whine!
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>
Guest_billronm_*
Posted 18 May 2012 - 09:26 PM
Hi Pat,
I will keep my fingers crossed also, Hopefully you'll be able to stay on 50mg. It seems like more and more people are being put on lower doses. We know the drugs work, so now that they are learning so much more about them, I think lower doses, and less annoying side effects are in our furure. Are you taking a water pill? I have been taking one since I was on Gleevac. I don't really know how well they work, but it makes me feel more at ease taking them. A couple years ago when I was still on G my ring finger swelled up so bad, my finger was turning purple, I tried for days to get my rings off and I couldn't so I ended up having to get my rings cut off. I was sick about that, I inhereted a diamond ring,& I had my engagement ring & wedding ring, I had them all joined together a few years ago, so when they cut them off I had to have them resized and joined together again it cost almost $600.00 to repair them. We ate weiners and beans for months. I've always worn my rings, but I could have waited until we hit the lottery, but Ron insisted we get them fixed right away,he's such a great guy, he understands how annoying it is to live with this disease, and putting up with s-e off and on. The one thing I've always done is wear my rings. We didn't have much growing up,so my little rings were important to me. And if you look real close you can see the itty bitty diamonds. Moral--If your fingers start to swell take your rings off asap! Lots o Luv Billie
Advanced Member
Posted 18 May 2012 - 10:22 PM
Pat, I know it has been a nice 9 week vacation. I hope you enjoyed every
minute of it. Wishing you all the luck in the world on your restart. But
now you know the first signs of PE, so you can get attention sooner.
Take care and enjoy your week-end as well.
Simone
Guest_billronm_*
Posted 18 May 2012 - 10:25 PM
Hi Mudi,
Welcome to our family! I was like you I thought ignorance is bliss. I have had cml for 5 years, 3 years on Gleevac, & going on 2 years on Sprycel. I stumbled on this site by accident almost 2 years ago. I followed it for a couple days, I was afraid it would be a gloom and doom site. And that's the last thing we need when we are told we have cancer. But after following the board I realized they were all nuts and I would fit right in!
You'll never meet a group of people that are more compassionate,caring,& understanding. But we all have a great sense of humor, and you have to laugh once in a while. You'll get all the answers to any question you might have,whether it's about cml, or side-effects from our meds.One of the first things I learned was that every symptom we get is not cml related, or a s-e(side effect) from our tkis( Gleevac,Sprycel,&Tasigma) I'm just getting old and and I have to accept it. But I'm going to blame cml as long as I can get away with it. Hee Hee. All our meds even aspirin have s-e,and some people on tkis have no s-e, and some of us have different ones especially when we first go on a new tki, most of the s-e go away once our body adjusts to them, and once in a while a s-e will appear out of the blue then go away and never come back again. I was on G for 3 years,but the gi issues were to hard on me, but I had gi problems before that. So my onc switched me to S which gave me a headache from hell at first,which is a common s-e with S but it gradually eases up daily and it took about 2 weeks before the headaches were under control,and now I hardly ever get one, I usually lay down about 15 minutes and it goes away. I took ibuprofin liquid gels and they helped me get through those first couple weeks. Other than that S has been a lot easier on me than G was. I have a couple other health problems that I have to take medicine for. I really think if I only had to take Sprycel I would feel pretty darn good right now. Pat had a pe(pleural effusion) which is rare but she can explain it better than I can. Just jump in anytime and ask a question,or contribute to the discussion,we learn something new everyday especially from our newcomers. Sincerely Billie
Guest_billronm_*
Posted 18 May 2012 - 10:43 PM
Dear Simone,
I just wanted to jump in and say Hi! How are you feeling? Good I hope. We are finally getting some decent weather again, it will probably snow next week, it has really been crazy for our climate for this time of year, but at least everything is nice and green,and my rosebushes are surviving. I had my first rose of summer bloom yesterday,hopefully we'll get more. I took a picture just in case. Take Care Billie
Member
Posted 18 May 2012 - 11:28 PM
Hi Mude.
I was wondering why you are switching from Gleevec to Sprycel?
I have been on Gleevec since 2005, so sorry I don't have advice about Sprycel.
Wishing you the best.
PamSouth
amlostale wrote:
I'm starting with Sprycel tomorrow. Until now I was with Gleevec. Not sure what to expect...
Any advice for me on the Sprycel.
Have a great night!
Mude
PamSouth
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