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Update after 3 months of treatment.

liver sprycel tasigna

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#1 AdamJ

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Posted 02 July 2016 - 10:10 AM

While I have posted only a few times, I have found reading this forum to be quite helpful as a new patient and I wanted to share my experience so far. I have not seen too many posts related to liver toxicity and I hope someone may find this useful in the future.
 
3/23/2016 Dx PCR 93.4399% FISH 87%
3/30/16 sprycel 100mg
4/15/2016 last dose sprycel (High ALT 128)
5/6/2016 tasigna 600mg/day
5/23/2016 AM last dose tasigna (high ALT 127)
6/6/2016 Sprycel 50 mg (plus Predinisone 10 mg plus Ursodeoxycholic acid 10 mg 3x daily for the liver)
6/17/2016 FISH Test 2% (ALT 33)
7/1/2016 Sprycel increased to 70mg (ALT 26)
 
My onc suggested waiting 3 months for a PCR, but based on what seem like promising FISH results, I am anxious to get a more precise measurement. Should I wait until September for the PCR or is it better to have a precise measurement at this time?
 
In addition, despite my hesitation, he feels as though getting me back up to 100 mg Sprycel is the best course of treatment. It looks to me that despite approximately 5 weeks of drug breaks over less than 3 months, my progress has been quite good and perhaps the 50 or 70mg of Sprycel is "good enough". Personally I would rather get off the Predinisone ASAP to see if my liver can stand on its own, but in the meantime I keep reminding myself to appreciate the fact that I am able to tolerate the Sprycel and fight off the CML and that I am under the care of a doctor.

3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU


#2 Trey

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Posted 02 July 2016 - 10:39 AM

Very close to CCyR in 3 months, which is good.  Especially with drug breaks.  You don't need the PCR since the FISH is a better measurement of drug response status above CCyR.

 

Steady lower dosage is much better than high dosage with many breaks.  No need to whip-saw your blood making system.  I would definitely lower dosage to at least 70mg, and if still needed breaks, lower to 50mg.

 

Your body is screaming "too much drug".  Many people need individualized drug dosages, and you seem to be a classic case for that.


Edited by Trey, 07 July 2016 - 04:07 PM.


#3 AdamJ

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Posted 02 July 2016 - 12:31 PM

Thank you for the positive response Trey. I edited the date above and I am glad to hear that my onc is on the right track focusing on the FISH test for now. I will continue to work on him regarding my desire for a lower dosage rather than the high dosage he is pushing for.  He seems to be in the old school of thought that the risk of mutation is higher with a reduced dose. From what I have read in this forum it seems that it no longer considered as a concern by many oncs, but he is clinging to his beliefs.  SO far at least he is getting results. I hope that my progress continues.


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU


#4 beno

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Posted 06 July 2016 - 04:20 PM

I'm getting a 3 month FISH test tomorrow.  I've been on 100 mg Sprycel with one 10 day break.  


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


#5 AdamJ

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Posted 07 July 2016 - 11:01 AM

It looks like we are roughly on the same schedule Beno. Good luck with the test. I hope it goes well for you.

 

I'm getting a 3 month FISH test tomorrow.  I've been on 100 mg Sprycel with one 10 day break.  


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU


#6 beno

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Posted 08 July 2016 - 11:06 PM

Thanks, I'm rooting for you as well. I'm happy my hemoglobin and platelet counts at least are close to normal. I wouldn't say I feel great, but so much better than six weeks ago.


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






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