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Do I have any hope taking Sprycel?

CML Bone Marrow Transplant Sprycel Post BMT

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#1 Brandon G

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Posted 01 May 2015 - 06:43 PM

I have been having major side effects post BMT. My doctor precribed me Sprycel and I have been taking it for a week now. I have been throwing up and getting night sweats. Could it be this new chemo medication? Does anybody have any good feedback from this drug? Does this medication bring up blood counts eventually? After my BMT I thought my blood counts would continue to go up and I would feel better. I actually feel more weak now than I felt leaving the hospital over a month ago. My blood counts went down rapidly and I am feeling hopeless. Will this medication help? Will the level 4 mulecular level of CML go down with this medication?



#2 pammartin

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Posted 01 May 2015 - 06:52 PM

I apologize, but most of what you wrote is Greek to me.  There are several who will address your questions shortly.  I am guessing Trey will be replying to your post within hours. 

 

Pam



#3 JPD

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Posted 01 May 2015 - 07:14 PM

I'm not sure about your specific side effects, but a lot of people have bad times at the start and then your body kind of catches up and gets used to the meds.  And, yes, your blood counts should all normalize in the first few weeks.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#4 dede5

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Posted 01 May 2015 - 09:25 PM

I don't know about the post BMT, but I've been on Sprycel 100 for 4 years. As for me, it's no walk in the park, but the side effects leveled off over a period of time. I still have some side effects, but the worst of it was gone after a few months. I, personally, never had the vomiting. I've been undetectable for the past two years. Sorry you're feeling so bad. Hope you start feeling better soon.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#5 Gail's

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Posted 02 May 2015 - 01:29 AM

Wow it sounds like you've had a rough go, Brandon. I'm sorry you had complications after the transplant. I don't know much about that but the meds you're taking now for cml can cause the nausea and sweats but so can the disease. So hard to tell where it's coming from. This is a good place to get encouragement and information. Keep up hope. The side effects of the meds do fade and a new one might pop up but this is a good place to discuss your journey. Please let us know how it's going. I hope you feel better soon.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#6 hannibellemo

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Posted 02 May 2015 - 06:40 AM

Brandon,

 

It will be difficult for most of us to answer your questions because of the missing element we have not experienced - the BMT. There is a transplant discussion board here and they might be able to help you sort out what is transplant related and what is not.

 

Here is the link: http://community.lls...ransplantation/

 

Good luck!


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 Trey

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Posted 03 May 2015 - 12:17 PM

The Sprycel side effects for you post-BMT should mirror the ones for anyone else.  The first couple weeks can be rough with Sprycel for some people.  Headaches and nausea can be bad.  Once you get through a few weeks (different for each person) things should get better.  But you may have some longer term, probably milder, side effects.

 

Possibly try changing the timing of taking the Sprycel.  With a big meal is usually best unless you can't hold it down. 







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