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The 20 mg club


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#1 Karinne

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Posted 14 January 2018 - 11:41 AM

Just curious. How many of you here are taking less than 100 mg of Sprycel per day and why?
Dx : 12/13/13 Sprycel 100mg Platelets around 100
December 2014 pcr = 0.0032%IS
December 2015 pcr = 0.00046%IS
October 2016 pcr = 0.024%IS (increase due to Cranberry Extract)
July 2017 pcr < 0.0032%IS
October 2017 pcr < 0.0032%IS
January 2018 PCRU !!!!!!!!!

#2 Riggered

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Posted 14 January 2018 - 02:15 PM

I started out at 100 and had to stop after 3 weeks due to low CBC counts.
You can see more of my history in my signature, but I offer this in addition; I've been on 70
For about 50 days and so far I can handle it and my PCR coming down. 100 was too much for me, I felt really beat up.
I'm tuned into the more knowledgeable people on this site who advocate for dose reduction, as I understand there is evidence that supports efficacy with less toxicity on reduced dosage.
I've discussed dose reduction with my onc and he supports the idea once I get my PCR in line. Hope this helps.

Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#3 mscl

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Posted 14 January 2018 - 07:39 PM

Dx 2/10/12 put on Sprycel 100 mg. 10/2015, Pleural effusions, both lungs, had about a 3-4 week break in Rx, reduced to 70 mg. PEs, weren't completely gone, started building back up, took about a 6-8 week break in Rx.

01/2016, Reduced to sprycel 50 mg.

10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.

1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, still undetectable.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#4 Jan0080

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Posted 14 January 2018 - 10:38 PM

My usual comment is that I would not want to be a member of any club that would allow someone like me to be a member BUT I am a proud dues paying member of the 20 mg club - btw what are the dues?  Can I give you a post dated check from a closed bank account?


Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#5 tiredblood

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Posted 15 January 2018 - 12:12 AM

Dues? No problem. We take copay assistance cards.

#6 scuba

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Posted 15 January 2018 - 08:06 AM

Dr. Cortes prescribed 20 mg Sprycel to me when I was over 50% PCR and FISH > 50%. This was in response to my severe myelosuppression reaction to 70 mg Sprycel. I was never started on 100 mg - he told me that 100 mg is too high to start anyone who has myelosuppression indications from Gleevec (which was my first TKI and didn't work). I had to stop taking sprycel until my myelosuppression resolved (3 months). When I restarted - he prescribed 20 mg and told me "we'll see what this does". My PCR and FISH plummeted and my myelosuppression stabilized. I asked if he was going to increase dose to 40 mg and he told me "why"? 20 mg is working, we'll stay the course. And so I remain after years and years on 20 mg - even trying cessation once bouncing around <0.01% and now PCRU.

 

No patient who has had any myelosuppression or a P.E. should be taking more than 20 mg sprycel. The myelosuppression and P.E. are indicators of very high sensitivity to the drug. That means your CML is sensitive to it also - and dies. 

 

Finding the correct 'effective' dose that minimizes toxicity is the smart way to treat patients.


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"


#7 beno

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Posted 15 January 2018 - 11:14 AM

Scuba, I wish I could take you to my next onc appointment.  Anyway, my onc said he will never consider cutting my 100 mg dose as long as I don't have PEs.  I've been anemic the entire time I've been treated so this month, I started cutting my pills in half to see if that will help the fatigue/anemia issues.  I don't like being dishonest with my doctor, but I also don't like him ignoring my quality of life issues to a much greater extent.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#8 scuba

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Posted 15 January 2018 - 12:20 PM

Scuba, I wish I could take you to my next onc appointment.  Anyway, my onc said he will never consider cutting my 100 mg dose as long as I don't have PEs.  I've been anemic the entire time I've been treated so this month, I started cutting my pills in half to see if that will help the fatigue/anemia issues.  I don't like being dishonest with my doctor, but I also don't like him ignoring my quality of life issues to a much greater extent.

 

Perhaps you can go to another doctor?

 

I am also anemic. Even on 20 mg, my RBC's are still below normal. 


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 beno

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Posted 15 January 2018 - 12:35 PM

I could go to another doctor, but it would mean a close to 5 hour round trip, so I keep going to the same place out of convenience.  Also, they are going to hire another onc at that office soon so I might get switched to a new doctor at the same place before my next appt.  I've actually gone to three different doctors at the same facility.  My first onc when I was in the hospital moved and my second onc had medical issues and could no longer work.  She was fully on board with dose reductions once my PCR was below .01% so maybe my next visit, I'll get another doctor.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#10 hannibellemo

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Posted 15 January 2018 - 03:11 PM

I started on 100 mg. Sprycel in Oct. 2009 after  developing severe liver toxicity from Gleevec. About 2.5 years in I developed a pleural effusion and stopped to allow it to clear. Restarted at 50 mg in May of 2012 and have been there ever since.


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 JohnFromChicago

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Posted 18 January 2018 - 05:29 PM

I was on 100mg Sprycel for the first 27 months. My oncologist agreed to drop my dose to 70mg at my last appointment, she actually brought it up not me. This was very surprising because at the previous appointment I inquired about dose reduction and she said she does not support dose reduction only cessation at PCRU. Now at this appointment she brought it up before she even knew my liver enzymes were elevated. Someone did a little research since I last saw her ;).  I am currently on 50mg until my liver enzymes return to normal. I am confident I will be able to sway her to just stay on the 50mg dose as long as my PCR stays in MMR for my next PCR in 6 weeks. I felt fine on 100mg for the first year and a half, the last 9 months have been kinda rough though.



Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg


0 Month PCR = 87%

3 Month PCR = 1.2%

6 Month PCR = 0.64%

9 Month PCR = 0.26%

12 Month PCR = 0.21%

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.05%

24 Month PCR = 0.04%

27 Month PCR = 0.01%

#12 Marnie

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Posted 22 January 2018 - 09:55 AM

~25 mg. 3 pleural effusions on higher dosage.

#13 kat73

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Posted 22 January 2018 - 11:30 AM

Marnie - I forget, how long you have been on 20-25 mg Sprycel, and without pleural effusions returning?  Also, how has that affected your PCRs?   


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.





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