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Switched from second generation to Gleevec


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#21 mlk210

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Posted 10 March 2016 - 10:30 PM

Just updating in case anyone ever looks back on this thread. My PE came back and I'm on another drug break. i went to my onc today and she highly suggested changing drugs. To tell the truth I was in agreement because I'm sick of not being able to breath. She suggested Tasigna, but when I asked about Gleevec she was responsive. She's agreed to let me try it but if I lose response then we have to revisit Tasigna (which I understand). Now I'm crossing my fingers I don't have horrible side effects from it. Thank you everyone for your advice on this matter!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#22 Buzzm1

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Posted 10 March 2016 - 10:46 PM

mlk210, what is your history/current status?


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#23 gerry

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Posted 10 March 2016 - 11:39 PM

I didn't want to have to switch from gleevec due to new side effects. :-)

#24 mlk210

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Posted 11 March 2016 - 10:20 AM

Buzz 

7/2014 Diagnosed with 106k WBC and over 99% FISH

Started on Hydrea and Allopurinol immediately

8/2014 Started Sprycel 100mg Had no horrible side effects except for headaches early on

11/14      2.0 PCR 

2/15        .009   

5/15        .011 

Changed Oncologists because staff lost PCR results twice

6/15         .007 NEW ONC

8/15         Undetectable

11/15       Detectable but too low to quantify

12/15 PE developed and taken off meds

12/15       Undetectable

1/16 Started 70mg Sprycel

2/16          Undetectable

3/16 PE returned and taken off meds

 

I hate the idea of starting a new drug, and new side effects.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#25 scuba

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Posted 11 March 2016 - 11:00 AM

Buzz 

7/2014 Diagnosed with 106k WBC and over 99% FISH

Started on Hydrea and Allopurinol immediately

8/2014 Started Sprycel 100mg Had no horrible side effects except for headaches early on

11/14      2.0 PCR 

2/15        .009   

5/15        .011 

Changed Oncologists because staff lost PCR results twice

6/15         .007 NEW ONC

8/15         Undetectable

11/15       Detectable but too low to quantify

12/15 PE developed and taken off meds

12/15       Undetectable

1/16 Started 70mg Sprycel

2/16          Undetectable

3/16 PE returned and taken off meds

 

I hate the idea of starting a new drug, and new side effects.

 

You are taking too much drug. You are undetectable. You don't need 70 mg Sprycel. After your PE resolve re-start Sprycel at only 20mg. If you doctor won't accomodate you - get a new doctor.

 

We're long past once size fits all. When patients are at MMR or below - especially when they are undetectable, there is a ton of room (time) to adjust, experiment and customize treatment. Re-start at 20mg. If it doesn't work, you'll know in 3-6 months. Chances are it will work. 

 

(I am borderline 'undetectable' - PCR < 0.01% - I only take 20mg Sprycel and thinking about taking 20mg every other day if my next PCR comes back 'undetectable')


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"


#26 Buzzm1

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Posted 11 March 2016 - 11:04 AM

mlk210, IMOO, after allowing the PE to clear, 50mg Sprycel may be your best option.  Sprycel has a higher efficacy than Gleevec.

 

You can break/cut any Sprycel 100mg you have remaining in half http://bit.ly/1oHD09v  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#27 jmoorhou

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Posted 17 March 2016 - 12:33 AM

When I read about the cardio affects of second generation TKIs, I made Gleevec work ...
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

#28 SandyG353

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Posted 18 March 2016 - 01:24 PM

Gleevec had my daughter in moledular remission within 6 months.  She has taken it for 7 years and is doing well - other than developing a cyst on her pancreas which isn't related to the drug.  I have one on mine,too.  In following other groups, I found that a lot of oncologists started the newbies on second generation drugs, only to switch them to Gleevec because of the side effects of Tasigna and Sprycel.  I wonder why the oncologists didn't start them on Gleevec which has been successful for over 15 years and doesn't cause the serious side effects of Tasigna and Sprycel.  So, if anyone is worried about being switched to Gleevec, don't be.

Sandy



#29 r06ue1

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Posted 18 March 2016 - 01:38 PM

SandyG353, are you saying that both you and your daughter have CML?  If so, better check the water.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg





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