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Preexisting mild Pulmonary Hypertension and Sprycel

Started by Silvertabby , Jan 27 2018 12:08 PM

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#1 Silvertabby

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Posted 27 January 2018 - 12:08 PM

I was diagnosed with a moderate leaky mitral valve and mild Pulmonary Hypertension 2 years before my CML diagnosis. I have been on 400 mg Gleevec for 4 years and have not had 2 PCRU's in a row (waiting for my latest results). I was considering asking my Onc about a drug change, possibly to low dose Sprycel, but since I just saw on this forum that Sprycel can cause PH, is changing a bad idea? Ironically my last annual echo in 2016 showed an improvement. (So much so that insurance denied approval in 2017 stating I should have an echo every 3 to 5 years instead). Since my response has been slow but steady, would a dosage reduction of the Gleevec to 300 make any difference in SE's or response?
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017
<0.01% - 12/2017

God is in control. I will trust Him.

#2 Red Cross Kirk

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Posted 27 January 2018 - 12:21 PM

If it were me, I would definitely consider going to 300mg/day. Your response has been excellent and it's a logical premise that SE will go down with reduced dose.

 

I keep noticing that a lot of us were DX in September.  The LLS should do a poll on that, that would interest me.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%

#3 Silvertabby

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Posted 29 January 2018 - 12:21 AM

Thanks for the help Kirk.  Ironically, after some routine blood work, it was on 9/22 (CML day) that I got a call from the lab that my white blood count was 109,000 and I needed to contact my doctor ASAP.  A week later I was told that it was probably CML, but the bmb would confirm it. 


Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017
<0.01% - 12/2017

God is in control. I will trust Him.

#4 Buzzm1

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Posted 29 January 2018 - 12:37 AM

Silvertabby, did you test again in December?  Was wondering if you held PCRU?


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

#5 Silvertabby

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Posted 29 January 2018 - 02:50 AM

I did. I was supposed to see my Onc on the 15th but freezing rain prevented me from making the 100 mile drive. Have rescheduled for the 31st. I could have called for the results, but my history with the nurses is they do not know how to interpret the results so I am patiently waiting.
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017
<0.01% - 12/2017

God is in control. I will trust Him.

#6 Silvertabby

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Posted 31 January 2018 - 11:37 PM

Buzz, Got my results today.
Less than 0.01% IS
Or. BCR-ABL/1 Ratio. < 0.000095
Less than 10 copies detected.

Not PCRU, but I will take it.

Nancy
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017
<0.01% - 12/2017

God is in control. I will trust Him.

#7 Buzzm1

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Posted 31 January 2018 - 11:43 PM

Buzz, Got my results today.
Less than 0.01% IS
Or. BCR-ABL/1 Ratio. < 0.000095
Less than 10 copies detected.

Not PCRU, but I will take it.

Nancy

 

That's great Nancy.  0.000095, I would that VDMR ....


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

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