I've been trying a self experiment on dosage reduction, because my onc is not in favor until guidelines become more clear. I'll be PCRU for five years this fall, with one blip during that time.
I'm currently on 100mg Sprycel, and since I don't want to take the time to split the pill in half and take 50mg per day, I'm doing 100mg every other day.
Due to the half-life, I realize it's not the equivalent of 50mg per day. But would such an experimental regiment be problematic in any way?
I have little side effects but I don't want PE or PAH or thyroid issues to sneak up on me, hence my desire to try this. I also think I've had a couple of small thyroid storms (I don't know for sure) on this. Once, when I first started the meds (shivers/chills, racing heart, then need to vomit; lasting about 20 min), then again after I had taken a week off and resumed. While my thyroid always checks out find when I request a test, I figure perhaps it could be another sneaky thing to add to the list.
Thank you for any thoughts!
Reduction self-experiment: 100mg Sprycel every other day?
Started by
Taylor
, Mar 20 2016 09:29 PM
17 replies to this topic
#2
Buzzm1
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Posted 20 March 2016 - 09:45 PM
Taylor, IMO, if you are worried about side-effects, the probability would likely be less on 50mg per day.
The time it takes to split a pill is negligible
In the short-term, the probability of you losing PCRU either way, after 5 years, is almost nil.
When is your next PCR?
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
#3
Trey
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Posted 21 March 2016 - 10:15 AM
There is little overall risk in doing it. It might be a good way for patients to learn if they could do a full cessation. If a person fails pulse dosing they would likely fail cessation, so this intermediate step seems to be a good approach. I would not be concerned about the skipped day method, even with the short half-life of Sprycel, because of the prolonged PCRU.
#4
tazdad08
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Posted 21 March 2016 - 11:57 AM
I done a very similar trial with Tasigna. I was doing one dose every other day instead of two doses per day. I made it for over two years doing that before I became detectable again. Good luck! Take your drs knowledge along with you experience and gut instinct to find the proper balance of life!!!!
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!
#5
kat73
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Posted 21 March 2016 - 12:00 PM
However, if you did decide to cut the pills in half, did you know you can buy a pill-cutter at the pharmacy? They're very cheap, and fool-proof; you never have to deal with the cutting edge yourself. You could cut your entire supply in half one day when you had the time; then you'd never have to do it again until the next batch of pills arrives.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#6
Buzzm1
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Posted 21 March 2016 - 12:35 PM
Pill cutters are free at my pharmacy.
I wouldn't hesitate to pulse dose (every other day) with lower doses, but I wouldn't do it with the full dose.
Just my personal opinion.
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
#7
Taylor
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Posted 09 August 2016 - 04:15 PM
Hi everyone, just a follow-up but I had my PCR test a couple weeks ago. Just got a call--all zeroes again 
I won't go back for six months or so.
What I did was do something like 3 weeks on the pulse schedule, then one week back on the full schedule, then switch back. I then went back on the full schedule a week or two before the appointment.
So, I guess it works for me -- for now
#8
scuba
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Posted 09 August 2016 - 04:27 PM
Hi everyone, just a follow-up but I had my PCR test a couple weeks ago. Just got a call--all zeroes again
What I did was do something like 3 weeks on the pulse schedule, then one week back on the full schedule, then switch back. I then went back on the full schedule a week or two before the appointment.
So, I guess it works for me -- for now
Congratulations Taylor!
"Pulse" scheduling may be just as effective at disease control as continuous dosing, but with additional benefits of reducing side effects and perhaps other TKI related damage. I only saw a few papers on this (mostly for older patients who could not tolerate full dose), but perhaps there will be more soon.
I am on 20mg Sprycel daily, but will drop to 20mg every other day after next PCR test.
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"
#9
DebDoodah22
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Posted 09 August 2016 - 10:52 PM
How old is older?
#10
kat73
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Posted 10 August 2016 - 10:55 AM
Ha! Yeah, I hear ya. Usually they use 65 as the bright line for "elderly," a loathesome landmark I just reached. This is the only birthday in my whole life that has ruined my day. I'm just being myself and honest here, among friends. To the world, I smiled and carried on, and thanked people for their cards and good wishes. Only my poor husband knew how I really felt. Never did I think I would be old and sick at 65. I watched my mother and my in-laws sail energetically and happily 20 more years after that number, still the same people, undimmed. Oh well. Anyhow, I certainly fit the label "elderly." And I hate it.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#11
Gail's
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Posted 10 August 2016 - 12:14 PM
Right there with you, kat. Certainly not the life I expected at retirement but I'm finding my way to new interests and happiness, just much more slowly and less intensely than when I was healthier.
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
#12
gerry
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Posted 10 August 2016 - 07:49 PM
Hmm - it appears when I hit the 50 mark I was suddenly considered older by the docs. Whenever I see one they feel the need to keep telling me "you know you're getting older", apparently that's the reason why anything goes wrong with me, this included side effects from Gleevec.
#13
rct
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Posted 11 August 2016 - 09:34 AM
One patients "pulse" is another doctors "noncompliance".
rct
#14
hannibellemo
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Posted 11 August 2016 - 01:27 PM
Taylor,
I've never heard our experience referred to as a "thyroid storm". What you described was my first night's reaction to Sprycel almost 8 years ago. I, too, had the uncontrollable tremors and vomiting. I continued to have the tremors (no vomiting), always at night and diminishing over time, for the next 6 weeks or so. At that time, bone crushing fatigue set in for the next 3-4 months. Since then, except for a pleural effusion episode at 2.5 years, I don't have too many complaints. For the past year I've been floating in and out of undetectible,
Trey has mentioned that most temperature intolerances are more likely due to thyroid but my tests have always been in the normal range so I don't know.
Just wanted to let you know that others have had the same initial experience with Sprycel. I never had the headaches that so many refer to though.
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>
#15
Gail's
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Posted 11 August 2016 - 01:36 PM
Normal thyroid labs but have crazy hot flashes worse than menopause.
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
#16
mdszj
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Posted 13 August 2016 - 07:34 PM
Taylor
My local hematologist says sprycel makes the thyroid go crazy (pretty much his exact wording). I suspect that taking 100 mg sprycel made my synthroid dose go up from 50 ug/day initially (when I was first dx cml) to its current dose of 125 ug/day. Now that I am at 50 mg S I am hoping to get my synthroid dose down some.
Good luck!!
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
#17
Taylor
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Posted 16 August 2016 - 08:44 PM
Pat, actually I remember reading a post of your years ago when I started Sprycel and it prepared me for the incident. I'm not sure if you would really classify it as a thyroid storm, because it's life threatening...however, it sure seemed to be pretty close from what I read about them!
#18
scuba
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Posted 17 August 2016 - 06:45 AM
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"
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