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And so it begins


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#1 Jamie2015

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Posted 29 January 2015 - 03:50 PM

I received the news I will be getting my medicine, Sprycel 100 mg, tomorrow afternoon! I AM TERRIFIED! It is taking every amount of my being to not just totally break down at work!

I am just trying to remind myself.
"I am happy, I am healthy, I am strong!"
-words of wisdom from my Grandmother

#2 Marnie

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Posted 29 January 2015 - 06:51 PM

Good luck with Sprycel.  Be prepared for headaches, but they will go away.  Mine lasted a bit over a week, maybe two.  I started out on half dose and that helped.

 

Anyway. . .just wanted you to know that IF you have headaches, it will subside.

 

Marnie



#3 mlk210

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Posted 29 January 2015 - 06:52 PM

You are strong!! Don't be scared, but me telling you that won't change the fact you will be. I think I thought something horrible was going to happen when I took the pill. But nothing did. I know how you feel, but you'll get through it! 


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#4 mlk210

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Posted 29 January 2015 - 06:53 PM

I agree with Marnie, the headaches can be bad if you get that side effect but one day they'll stop!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#5 Jamie2015

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Posted 29 January 2015 - 08:17 PM

Is there anything I can take for headaches? Thank you guys for the encouragement. I really appreciate it.

#6 mlk210

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Posted 29 January 2015 - 08:24 PM

Jamie - I took Advil and Aleve (not together). I will tell you, it made the headache milder, but it still lingered. I swear I was taking them every 4 - 6 hours, but it still didn't rid them completely. Then one day they stopped and that was it. I'll cross my fingers you are someone that doesn't get that side effect! :)


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#7 Darlene_Jack

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Posted 29 January 2015 - 09:18 PM

Good luck. I took Sprycel for about a year n a half. Had to stop because of boarder line pulmonary htn. Darn med.
One breath at a time

Darlene jack...

#8 Billie Murawski

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Posted 29 January 2015 - 09:20 PM

Hi Jamie,

 I got those stupid sprycel headaches too. I took ibuprofin liquid gels they helped me get through those first few days.If I remember correctly everyday they got a little bit better then after about the third day they would come and go for about 2 weeks but I kept them under control with the ibuprofin.

 I'm such an idiot I started S the day before thanksgiving so my husband Ron cooked the meal and he and our little cocker spaniel Annie sat at the table and ate dinner all by themselves. I don't think I was missed. I've been on this board 4 years and lots of people went on S and didn't get headaches.

I started out on Gleevac and I remember I was absolutely terrified to take that first pill nothing happened, but after a couple days I did have a lot of gi problems. Three years later I went on Sprycel same thing I think I held that pill for a couple hours before I had the nerve to take it. I was so scared. I took the pill nothing happened bright and early on the next day (Thanksgiving ) I got the headache.

Marnie and I started on Sprycel at the same time but she cheated she started out on a half dose and I took the full dose. She never told me she was starting at 50mg. So that's why she only got a half a headache :angry: !

        You will be fine         Billie



#9 pammartin

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Posted 29 January 2015 - 09:44 PM

I can't add much, the others have covered the worst part of my journey with Sprycel, The Headache. Billie's story about her Thanksgiving adventure into Sprycel was one of the first posts I read about the drug. Her description was perfect, it begins with a headache that feels like someone is driving railroad spikes in your head. By the second week, it only feels like someone is using paneling nails. She probably doesn't know this but I stole her description and use it today when explaining those first few weeks. Marnie brought up an important point, you might not get the headaches, or any other symptom, each of us react differently. I echo Billie, you will be fine. Get lots of rest when possible and give yourself time to adjust.

#10 Billie Murawski

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Posted 29 January 2015 - 09:52 PM

I can't add much, the others have covered the worst part of my journey with Sprycel, The Headache. Billie's story about her Thanksgiving adventure into Sprycel was one of the first posts I read about the drug. Her description was perfect, it begins with a headache that feels like someone is driving railroad spikes in your head. By the second week, it only feels like someone is using paneling nails. She probably doesn't know this but I stole her description and use it today when explaining those first few weeks. Marnie brought up an important point, you might not get the headaches, or any other symptom, each of us react differently. I echo Billie, you will be fine. Get lots of rest when possible and give yourself time to adjust.

Yeah Pam,  Tell her what you did!!! I warned her Jamie but Pam is stubborn she didn't listen, She started her Sprycel right before Thanksgiving, I think her family ended up with tv dinners that day. These youngun's jest never listen.       Billie



#11 Marnie

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Posted 29 January 2015 - 11:02 PM

Stay hydrated and take Aleve.  That seems to be what most docs recommend. . .or at least that's what I've heard.



#12 Frogiegirl

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Posted 30 January 2015 - 06:57 AM

Hey ....I haven't ever been on sprycel only Tasigna. After hearing the news that you have cancer for me the last of my worries were the side affects. the second the pharmacist handed me my paper bag that held what I was told was the way to step back from the ledge I didn't care about the side affects I just wanted to take it right away and begin my journey to a "safer place" Health wise". It didn't mean I wasn't scared but I didn't want to listen to all the side affects everyone else was having and worry myself.....what if I didn't respond the way they did? And I added stress my body didn't need, at a time when stress only compounds the problem physically and emotionally. I believe in educating yourself in every way possible....after all this is our lives were talking about :D But in the end we all handle things different. My doctor told me not to read the list of side affects and write down any changes I felt and we would discuss them. I think his way of thinking is if you hear it you may just "think" you are having the same side affects. I did however develop migraines for awhile and I still deal with the occasional headaches, but I'm alive and responding well. I think that should be the bigger picture we look at. And yes ALEVE is my friend :wub: YOU'VE GOT THIS ;)


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#13 mikefromillinois

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Posted 30 January 2015 - 08:59 AM

Hang in there Jamie.  Side effects differ from person to person.  I have been on Sprycel for about three years and I have never had headaches.  The longer I take this medicine the better I get to know how it affects my body.  Paying attention to that will help you.  I find that keeping hydrated and reducing salt intake truly minimize my symptoms.  But putting things into perspective, on most days there are no symptoms at all.

 

Good luck...

 

Mike



#14 klf2013

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Posted 30 January 2015 - 09:21 AM

Hi Jamie,

The first day I took it I went to work, and I felt fine until around 2pm, then I had the shakes, nausea and a 102.4 temp. Onc insisted I go to the ER, and after every frickin blood test was run and nasal swab, chest xray....etc.....they found.....NOTHING! and by 8pm I was hungry and felt fine.  That same pattern happened for several days, only without the extreme temp.  The next day it only went to 101, the next was 100.6.....etc.  Pretty soon, I was counting how many good days I had and then, just stopped counting because I had lots more good days than "off" days.  That was the first month. I am a school nurse, so low stress and running around. I think I took the day off after the ER visit and then we had a long weekend, so I was fortunate to have extra time off.  Give yourself the time!!!!

 

I agree with what Frogie said above. Your Srycel journey, is just that, YOURS. You may just be more tired, or a little nauseated. Just keep record of how you are feeling. The one common thread, is there is an end to them. I think the majority of us on Sprycel adjust and those initial side effects get minimal or go away completely. Hang in there and imagine a large circle of people surrounding you with good positive vibes. We have all been there. Virtual hug coming your way! :)



#15 Antilogical

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Posted 30 January 2015 - 05:21 PM

There will come a day that you think more about chocolate than you do about cancer.  Wait for it..........


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#16 pammartin

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Posted 30 January 2015 - 06:01 PM

Amen to the chocolate!

#17 CallMeLucky

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Posted 30 January 2015 - 11:26 PM

I've been on Sprycel for a couple of years now, for the most part it hasn't bothered me too much.  I din't have any headaches.  I did have a good amount of chest discomfort, thought it was a bad side effect, turned out to be reflux from the drug.  I watch what I eat and have very few side effects to speak of.

You're going to be ok, but nothing we say will really make you feel completely calm, unfortunately you have to go through it, but rest assured it won't be long before you are responding to someone new, telling them the same thing.

 

Good luck!


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%
 

 


#18 hannibellemo

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Posted 31 January 2015 - 09:23 AM

Jamie2015,

 

By now you have taken your pill, how did it go? Enquiring minds want to know. I was also one who did not have headaches, but I had my own set of side effects, we all do.


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>


#19 Jamie2015

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Posted 02 February 2015 - 02:28 PM

Thank you everybody! I feel "good" (lol as if I can even put that in the same sentence with this) about starting Sprycel! I actually will begin tonight! I chose to hold off for the weekend seeing how it was my step sons birthday and I wanted to be 100% me! No distractions! I begin tonight, so fingers crossed! I have prayed and prayed and I know God will send me down the path made for me! Good luck to everyone else on their adventures! <3

#20 Jamie2015

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Posted 02 February 2015 - 02:31 PM

BUT quick question! Our wedding is in 2 months! And I know drinking while taking this probably isn't the best idea. . I've had my honey moon booked in Antigua at an all inclusive (frozen drinks, umbrella drinks, did I mention drinks) for 1year now (bammm cml surprised me) lol has anyone ever stopped taking their meds for a week?

I plan on asking my doctor about this next Monday when I see him.




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