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New to Sprycel- 3 days in, scared!


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#1 busdriver

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Posted 10 August 2010 - 05:02 AM

Hi, I know that many others said the first week can be tough, but UGH!!  I ended up at the ER last night because of dehydration, I have had a headache for 3 days, my bones in my hips are hurting, I feel pretty much like I have been hit by a truck.  They did a CBC and CMP and my bloodwork already showed my WBC is starting to go too low, along with other numbers.  One thing that has me curious is why would my lymphocytes ( on my differential) show high- 55?  Should I be concerned?



#2 hannibellemo

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Posted 10 August 2010 - 06:26 AM

Hang on, bus driver, the first week or two on Sprycel are the pits, no doubt about it! Headache should disappear. I've been on Sprycel for 10 months and even though some days are better than others, on the whole I don't feel too bad! Don't worry about your lymphocytes - mine are sometimes in the 50s, too. I've been told this could be due to allergies, etc. ( live with 2 cats and I'm allergic to cats!) My WBC runs in the low to mid 3s and my ANC is steady at 1.2. Low, but my new normal. My RBCs and Hemoglobin took a hit at first but they have also leveled off. I have never had to take a Sprycel break due to low counts like I did on Gleevec. That's not to say you won't but it's too early to tell yet.

I think it's safe to say that none of these drugs are a walk in the park for many of us - at least at the beginning. Keep in contact with us and we can offer reassurance and encouragement while you're going through the "getting acquainted" stage!

Good luck and take care,

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>


#3 raegles

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Posted 10 August 2010 - 06:47 AM

I've been on Sprycel for 11 months since problems with Gleevec.  I had a headache for about 2 weeks which disappeared.  Also my WBC dropped quickly but then became normal after about 2 months.  I'm having other issues, none life threatening, but I don't need to tell you about them because everyone seems to react differently to these meds and you may never experience them.  The Sprycel is now doing a great job controlling my CML and that's what I'm trying to focus on.  If you have questions that I can answer, feel free to ask.  Hope all goes well for you on Sprycel.

Take care,

Steve



#4 VickiW

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Posted 10 August 2010 - 10:22 AM

Hi busdriver!

here's my 2 cents.  I am 17 months on Sprycel and still remember well my first week, ouch!  Took about 2 weeks for me for everything to level off.  I agree with everything that has been said already.  Don't panic about the numbers, this is Sprycel, not Gleevec.  I was on Gleevec for 2 years with increasingly horrible side effects (which ended with eventual total failure-that's why I was switched).  I LOVE Sprycel now.  I mean no drug that has to be powerful enough to do what these drugs must do is going to be easy on the rest of our bodies, especially in the beginning, but I am doing 100% better now then when I was Gleevec.  Were you given a couple day or so break before being switched?  I was and I think that made the difference as to why I seemed to have had a bit easier time with the switch then many others although, even for me, it wasn't a piece of cake. especially the first few days, but my Onc warned me to plan on not being too functional at first and what I could take to make it a bit easier.  Hang in there!  We're all here for you  Keep us posted!


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#5 Sloater

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Posted 15 August 2010 - 06:53 PM

Hey Bus Diver...  You have every right to feel like you were hit in the head with a stick, plus they kick you in the calves because the muscle pain can get pretty bad at times.  .  It does hurt, but please stay with it.  It WILL go away.  I have been on Sprycel since February and everything is as normal as normal gets after the first few weeks.   I have been so fortunate and only feel pain after workouts.  Headaches are a thing of the past.  You can yell at those of us that know better if this does not happen... 

Happy days are ahead...

What is, is.

Sloater






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