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Hope to get started on Sprycel next week


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#1 WoofWoof

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Posted 23 October 2012 - 08:00 PM

Looks like I'll be on Sprycel soon. Started with Gleevec then Tasigna for two years but due to a severe rash have been off all meds for the past three weeks. Waiting for the rash to clear and results of ECCO/EKG, FISH, etc.

Guess my stockpile of Tasigna won't do me any good.


I have cancer but it doesn't have me


#2 Johnc

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Posted 24 October 2012 - 06:06 AM

Woofwoof

I started Sprycel about two weeks ago. I read many threads here and it helped me prepare for the first two weeks on it.

The first night I had a headache,sweats and a spike temp with nausea and vomiting the first day. Now everyone reacts differently but being prepared was the right approach for me. Days proceeding I only had a headache Which lasted a few hours in the morning. On occasion I took 1/2 ibruphen. I am on 12 day and now only struggle with slightly being out of breath during my 3 mile daily walks and a mild headache every other day.

Good luck but some idea of what you might go through may be a help, but remember everyone reacts differently.

Johnc



#3 pammartin

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Posted 24 October 2012 - 07:36 AM

John,

The site has been acting a bit weird, I did pm you and hopefully answered a few of your questions.

Pam



#4 pammartin

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Posted 24 October 2012 - 07:38 AM

Beginnings of Sprycel are a bit rough sometimes, great thing is most of them go away in about a week or so.  Good Luck!

Pam



#5 CallMeLucky

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Posted 24 October 2012 - 12:44 PM

I'll be right behind you.  Stopping Gleevec on 11/6 and starting Sprycel on 11/16.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 Lizzybee

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Posted 24 October 2012 - 01:47 PM

I am off Tasigna right now and will probably be switched to Sprycel when I follow up with my onc.  Does it help mitigate the side effects if Spycel is started at a lower dosage and then increased?



#7 Melanie

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Posted 24 October 2012 - 04:10 PM

Not sure if my experience will help but, the first time I tried S, I took a full dose and within hours was in bed with flu like symtoms and headache that wouldn't quit.. The second time I started, I started much slower with 1/2 dose every other day for a week, then 1/2 dose every day.  I never got up to full dose due to chronic low ANC, but the slow start was much easier on the side effects for me,,,no flu symtoms and only mild headache that went away quickly. Hope that helps, but as others have said everyone reacts differently.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#8 Marnie

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Posted 24 October 2012 - 06:20 PM

Hey, Woof. . .good luck with Sprycel.  It has worked great for me, and I feel a lot better than I did on Gleevec.  I've mentioned this a couple of times here, so sorry if it's a repeat.  When I switched, I took a 5 day drug break and then did half dose (50mg) of Sprycel for a week before going to full dose.  That seemed to work well for me.  I had heard about monstrous headaches, but I only had a low-grade headache for about a week, and haven't had one since. 

Hope that Sprycel works well for you!

Marnie



#9 CallMeLucky

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Posted 24 October 2012 - 08:45 PM

Can you break 100mg Sprycel in half or do you need 50mg pills to take a "half" dose?


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#10 hannibellemo

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Posted 24 October 2012 - 09:34 PM

Sprycel should not be split. The good thing is the price break starts with 50mg. Half the cost of 100s. No break for 70s, 80s, etc.

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>


#11 beverly

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Posted 25 October 2012 - 12:20 PM

Still waiting on my 1st Sprycel delivery and platelets at 988 now BASO% 7.91 BASO# 1.54WBC 19.40 NEU# 14.20 MONO#1.00  theses are only the HIGH ones listed. I developed a lump and bruising around it on my forearm Dr. said could be my platelets. Wants to put me on something that will make my legs swell she said. 

Thanks for the info it helps to know when you don't know anything to start with.

Taking a hands on approach too since we are the only ones we trust with our lives to do it. We can do it and not depend on others to make our lives happy only we can do that.

Good day to all good health!!!



#12 beverly

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Posted 28 October 2012 - 12:47 PM

Thank you Dr offices not very good at contacting US Bio for Sprycel. Still not on it after being approved a month ago... I am on Anagrelide 0.5 mg.  2 twice a day until I get the Sprycel. Headaches .. Also taking anti-depressants



#13 beverly

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Posted 28 October 2012 - 12:50 PM

Wow that is what my new Dr wants me to do as well. Start out on 70 then up to 100 my 1st Dr. who I fired wanted me to start with 100.






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