My son was 3 when diagnosed. He could not swallow the pill, so we had to dissolve it in Apple juice and have him drink it. I have tried it myself and knew it was not sustainable. Shortly after he started the TKI he had a g tube placed. Which has been a life saver since he needed a transplant. He is now 5 and we have been working with him on swallowing baby M&Ms. He has been doing pretty well with it for the last 2 weeks and we are getting ready to give swallowing the sprycel a shot.
So here is my strange sprycel question. When you put the pill on your tongue to swallow, does it have any taste at all? Without going into detail my son is hyper sensitive to tastes and smells. We think from the treatments he has had. If he tastes anything at all when he puts the pill in his mouth it will create a set back.
Thank you for your help!
Strange Sprycel question
Started by
CMLParent
, Mar 05 2017 09:09 AM
16 replies to this topic
#2
Trey
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Posted 05 March 2017 - 10:58 AM
I use the tiny 20mg Sprycel tablets. They are about 3mm and are fairly round so they go down very easily. I have not sensed any taste with them at all, unlike Gleevec. I think he would be able to take them without much issue. When I was splitting the Gleevec 400mg into two pieces, I used to take the half Gleevec tablet after chewing some food, and before swallowing I would put the Gleevec into my mouth and swallow it all at the same time. Otherwise the taste was horrible, and the jagged edge was an issue.
Also, maybe he could eat something he likes first to dull the taste senses, and then take the pill. The taste buds are most sensitive when the initial item hits them.
This also makes me think about something. When taking Gleevec my throat seemed narrowed and swallowing vitamin pills was difficult for me. With Sprycel I guess that has disappeared. I had not thought about that before now.
#3
scuba
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Posted 05 March 2017 - 01:18 PM
I take 20mg Sprycel tablets which are quite small. You might try putting the pill inside some food that can be swallowed whole. In that way the tablet will not be "tasted". The tablet to me has no taste - but I don't let it sit around long in my mouth anyway.
When I have to give my dogs pills, I put the medication in a pill pocket. A pill pocket for your son might work as well. I don't mean use a dog's pill pocket - just make one from human food (like bread) and put the pill in it. Should work fine.
(note: my sons have tried the dogs pill pocket when they were young and they both made it to adulthood. One is a Captain in the Air Force and the other flies Apache helicopters. The dog pill pockets might have done some good!)
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#4
CMLParent
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Posted 27 March 2017 - 10:17 PM
Good news to report. After training with baby M&Ms for 3 weeks he made an attempt to swallow the sprycel and had no issue at all. Swallowing them every night will be another story but this is the first step to getting rid of the tube. Who knows maybe it will be gone by the time he starts kindergarten this year. Thanks for your help!
#5
Frogiegirl
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Posted 27 March 2017 - 11:16 PM
That's GREAT news!!!!! ♡Hugs♡ and encouragement of patience coming your way:) that's huge! My seven year old struggles with cough syrup 
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.
#6
Gail's
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Posted 28 March 2017 - 01:46 AM
So happy for the swallow success. Glad he's making such great strides! Here's to hoping the tube is gone 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
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
#7
hannibellemo
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Posted 28 March 2017 - 08:19 AM
That is great news. Congratulations on your imagination in trying to help your son and his success!
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>
#8
tazdad08
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Posted 28 March 2017 - 09:14 PM
Prayers for your entire family! I have often been thankful that I have cml and not my children. I can't possibly say that I know your pain. I will continue to pray for you and your son. And I want to say that I have the utmost respect for any and all caregivers... especially the ones caring for a young a child.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#9
CMLParent
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Posted 31 March 2017 - 02:15 AM
So things have been going well on the swallowing side. However the last two days in a row he has been vomiting several hours after taking his sprycel. We give zofran 30 min before the dose like we always have. When dissolving the pills in 40ML of apple juice and administering through his tube he has never had this issue. We tried getting him to drink more water and that seemed to make things worse. Any thoughts?
#10
Buzzm1
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Posted 31 March 2017 - 02:34 AM
CMLParent, what dose Sprycel is your son on and what are his PCR readings? I was on Gleevec 400mg which caused me endless severe nausea which improved greatly when I began taking it an hour after my largest meal of the day, after digestion was already well under way.. If you haven't already, you might try it. The best to you ...
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#11
Melanie
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Posted 31 March 2017 - 12:55 PM
So sorry, your little one is going through this and you too! I can't speak for Sprycel, but my Bosulif caused me nausea until I also started taking it "after" dinner and in the evening closer to bedtime so hopefully I would sleep through it. That's worked for me most the time.
Sure hope you're able to find a way to relieve the vomiting. Praying for you both!
Sure hope you're able to find a way to relieve the vomiting. Praying for you both!
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)
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)
#12
Trey
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Posted 04 April 2017 - 03:29 PM
What is his dosage? If more than 20mg I would split the dosage to twice per day.
Other thoughts are reduce fluids within 2 hours before and after taking the Sprycel. Mainly use solid food along with the drug.
#13
tiredblood
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Posted 06 April 2017 - 07:39 PM
Taking the Gleevec an hour after eating was great advice. I've been doing it for several months now and it has alleviated the nausea I was getting when I took it right after eating. So, a belated thank you is in order.CMLParent, what dose Sprycel is your son on and what are his PCR readings? I was on Gleevec 400mg which caused me endless severe nausea which improved greatly when I began taking it an hour after my largest meal of the day, after digestion was already well under way.. If you haven't already, you might try it. The best to you ...
#14
Buzzm1
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Posted 06 April 2017 - 08:04 PM
Taking the Gleevec an hour after eating was great advice. I've been doing it for several months now and it has alleviated the nausea I was getting when I took it right after eating. So, a belated thank you is in order.
Thank you tiredblood. I am so glad it helped you as much as it did me. Hopefully it will help new CMLers avoid much of the nausea so prevalent with Gleevec.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#15
jmoorhou
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Posted 14 April 2017 - 01:01 AM
Taking Gleevec an hour after big meal has been a lifesaver for me too, does anyone know who discovered this because I'd like to thank them. 
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#16
Buzzm1
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Posted 14 April 2017 - 01:10 AM
Taking Gleevec an hour after big meal has been a lifesaver for me too, does anyone know who discovered this because I'd like to thank them.
I admit to it. You are welcome; glad it helped you. Desperate people do desperate things. I had a very hard time with Gleevec and dreaded taking the tablet every evening as I knew how sick it was going to make me feel. Only wish I had figured it out a lot earlier; it would have saved me from so much misery.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#17
Pin
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Posted 14 April 2017 - 08:38 PM
I do this too, always wait for my food to digest somewhat - trial and error has shown there's a window of perfect opportunity with Gleevec, and it depends on the size of the meal as to optimal timing 
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
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