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Switch to Gleevec from Tasigna


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#1 rcase13

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Posted 16 December 2014 - 07:31 AM

Nothing has been decided yet. I haven't even had my 3 month PCR/Fish test yet. But the doctor has mentioned knocking the CML out using Tasigna and then switching to Gleevec for the long haul. I have pretty advanced GERD and can't take my PPI with Tasigna. I have to restrict my diet severly to prevent severe acid attacks. At first it was really difficult and I had trouble maintaining weight. Now I think I can manage it with two 20mg Pepcids a day. The doctor has me taking the Pepcid two hours after I take the Tasigna. By the time I take the Tasigna the Pepcid has worn off and I have lots of acid! The Tasigna appears to be absorbing well. I responded well to Tasigna and my blood numbers return to normal or close to normal very quickly. The main side effects are the burning head and face.

Has anyone ever heard going backwards from a Tier2 to Gleevec? While it has been difficult I have adjusted to the Tasigna/Pepcid schedule and don't want to rock the boat. My main objective is killing the stupid cancer. My comfort can go to hell. My son is only 12 I want to hold my grandkids.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#2 CallMeLucky

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Posted 16 December 2014 - 11:46 AM

This is a newer idea as Gleevec is going to be generic very soon. From a cost perspective they are looking at a model where you knock down on stronger med and then maintain with less expensive. You can debate this many ways. Upside is lower cost but if side effects are worse or if response slips then you may need to go back. On other hand gleevec seems relatively safe over long haul. the newer TKI are stronger and although not common the significant side effect profile for the newer TKI are more dangerous when they occur. I would say focus on the now and just let Tasigna get your numbers down. If you get to the point where it makes sense to try something like that you can decide then. Not sure why your dr felt the need to bring this up now.
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%
 

 


#3 garfonzo

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Posted 16 December 2014 - 04:25 PM

For what it's worth, i was taking PPIs for acid and GERD prior to my Dx. Turns out it was my swollen spleen from the cml that was pushing into my stomach and forcing the acid up. After starting Tasigna, my spleen returned to normal size and wolla! No more acid reflux.
1/22/2013 initial dx WBC 550k
1/28/2013 begin Tasigna 600

pcr test %IS Drug Dose
7/24/13 2.889 Tasigna 600
10/23/13 2.442 Tasigna 600
1/24/14 2.497 Tasigna 600
3/5/14 2.158 Tasigna 600
6/4/14 1.319 Tasigna 800
9/3/14 0.982 Tasigna 800
12/8/14 0.845 Tasigna 800
3/16/15 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM
11/9/15 0.307 Sprycel 100
1/6/16 0.1 Sprycel 100 - MMR mayo clinic
4/4/16 0.1 Sprycel 100 - MMR
5/9/16 0.1 Sprycel 100 - MMR
6/6/16 0.06 Sprycel 40 - MMR
7/6/16 0.1 Sprycel 40 - MMR
9/12/16 0.09 Sprycel 40 - MMR
11/15/16 0.1 Sprycel 40 - MMR
2/14/17 0.07 Sprycel 40 - MMR
5/16/17 0.06 Sprycel 40 - MMR
9/11/17 0.05 Sprycel 40 - MMR
1/15/18 0.05 Sprycel 40 - MMR

#4 rcase13

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Posted 16 December 2014 - 06:08 PM

For what it's worth, i was taking PPIs for acid and GERD prior to my Dx. Turns out it was my swollen spleen from the cml that was pushing into my stomach and forcing the acid up. After starting Tasigna, my spleen returned to normal size and wolla! No more acid reflux.

Wow I wish it was that easy. I have GERD since I was 19. I was one of the first to try the then new PPIs. When the doc took me off the PPI (Prilosec) I almost immediately started having acid attacks and throwing up acid. I changed my diet and started taking Pepsid twice a day to control it. I basically eat salads and grilled chicken now. Anything else and I have an acid attack.But I am fine with this arrangement. In the end the main goal is to beat this cancer. I can endure just about anything.


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#5 JPD

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Posted 16 December 2014 - 06:22 PM

Rcase - I take it you have ruled out gluten and/or dairy intolerance?  My 18 year old son is in the middle of a doctor ordered gluten-free and dairy-free 7 week "test" and his GERD has been almost nill.  Im pretty sure you've done it, but never hurts to ask


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#6 rcase13

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Posted 16 December 2014 - 06:51 PM

Yeah I have ruled everything out. Been dealing with this for 26 years.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#7 Tori

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Posted 16 December 2014 - 08:22 PM

I started on Tasigna and after several months switched to Gleevec (due to significant hair loss on Tasigna - I'm a 35 year old and that was too much to bear for the long term if there were other options). I was initially concerned about the switch, but my doctor shared a similar point of view that has been discussed about starting with the stronger drugs to get the quick and deep response and then switching to gleevec for maintenance. He didn't have any concerns about switching between the two and it seems to be working out well so far ( I've been on gleevec for about 5 months).

#8 Pin

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Posted 20 December 2014 - 04:54 AM

Fascinating - This is an interesting approach, no reason not to try especially if you can take your regular acid meds with Gleevec.

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


#9 SandyG353

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Posted 23 December 2014 - 12:59 PM

Hi.

When discovered Gleevec was called the "miracle drug"  and saved the lives of many people who had CML.  I belonged to a group on yahoo and  learned of the experiments as new drugs came up and how the individuals did.  I believe that Tasigna is produced by Novartis as is Gleevec.  Looking at the drugs, the only one that would have worked for my daughter is Gleevec.  I am curious  as to why some oncologists chose to start their patients on Tasigna instead of Gleevec.  In the Yahoo CML2 group individuals were changed to Tasigna if they failed to reach remission.  Gleevec has been on the market for a long time and has shown to be effective and have side effects that are more tolerable than the other drugs that have  been prescribed such as Tasigna and Sprycel.  Fortunately,  for my daughter. Gleevec works.  She was in molecular remission within 6 months - tops.  Due to a heart condition , she would be unable to take Tasigna nor Sprycel.  I am happy that she has been doing well.  The only problem she has is above the norm eyebleed which lasts long and is painful. She will be taking a blood test to see how her body metabolizes the drug . After the test, her doseage might be reduced.

Sandy



#10 CallMeLucky

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Posted 23 December 2014 - 01:21 PM

The reason for starting on Tasigna is a bit of science, a bit of marketing, and a bit of guessing.

Gleevec is going generic so Novartis would prefer you take Tasigna. So they ran trials that showed Tasigna gets a deeper response faster than Gleevec. Some have proposed that means a better prognosis. No one really knows for sure it seems.

We are playing the long game, everyday we have normal blood counts we are ahead, the rest is hedging on how long you keep it going. Some think deeper early response will equal longer survival, not really sure.

I heard an interesting quote from a doctor recently, "people who don't try to live longer, live longer."
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%
 

 





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