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Convincing Oncologist of trying cessation


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#1 gianfranko

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Posted 21 February 2017 - 06:56 PM

I see many of the people here are off TKIs. How did you manage to convince your oncologist of doing that? My wife has been PCRu for years and the oncologist won't even lower her gleevec dose.

#2 Gail's

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Posted 21 February 2017 - 07:08 PM

Get a new doc or just break tablets in half until next pcr, and if still low, tell him. Otherwise just go back to original dose.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#3 mikefromillinois

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Posted 21 February 2017 - 07:31 PM

I was with my first oncologist for about four years.  He worked out of a community hospital serving a county of about one million residents.  He is not one of the CML "experts" but he does see a lot of blood cancer patients.  I had a quick and deep response to meds.  His role in my treatment quickly became one of routine visits.  After two years we began talking about the possibility of stopping the meds.  Those talks continued for two years, and he then changed his tone on the issue saying that he wouldn't support stopping or reducing the meds.  He suggested that the meds were working well...if it's not broke let's not fix it.  On my own I looked for and found a clinical trial and I have now been off meds for over 20 months and all is well.

 

(stepping up on the soap box)  If I had listened to my first oncologist I would still be on the meds and suffering the side effects and risking the added potential of long term toxicity to my body.  The meds are about $10k a month, so I have saved somebody $200K over the past 20 months - although I was paying a sizable chunk of dough myself in copays and out of pocket fees.

 

I liked my first doctor a lot - but - he wasn't doing me any favors with his treatment philosophy.  He is now my former doctor.

 

By the way, if I had never visited this forum (I have been coming here for over five years) I never would have had the guts to disregard the advice of my doc and seek out a trial on my own.  Just sayin'.  I have learned more here about CML than in the doctor's office.

 

I consider stopping the meds to be the best thing I could have done.  But each case is unique, and I am not suggesting everyone should try it.  Good luck...

 

Mike



#4 gerry

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Posted 21 February 2017 - 08:09 PM

When I started seeing my second doc, switched docs for other reasons, he was a "keep hitting it hard doc". I had only been on Gleevec for around 5 months. After reading Chris and Joel's experiences I started talking with my doc, first about reducing. I reached PCRU and was taking 400mg Gleevec, I had discussions with him then about reducing, which he eventually agreed to, so after a year PCRU I reduced to 300mg. I then started talking to him about stopping, he wasn't keen on it at first but he eventually came round. He has since had a couple of other patients come off and willingly suggests it to them.

It may be slightly easier to stop here in Australia as we have run a number of STOP trials, so that might have helped convince him. Plus he knows I look into things a bit more than some of his other patients, my info coming from Trey, Chris, Joel and others here. He also knew that I would return to a TKI, if somewhat reluctantly, if the CML returns.

My doc still talks about mutation to me, which I find a bit odd, haven't seen anything like that come out of the STIM trials.

 

Ask the doc why they won't consider reduction etc, it might be there hasn't been enough trial information on it for them. You could show them this http://www.bbc.com/n...d-tyne-38680482



#5 scuba

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Posted 21 February 2017 - 08:11 PM

Doctors have liability. So they feel safe in 'towing' the line until the line is changed. This is their livelihood and we should all understand their motivations. They don't live with CML; they don't live with the side effects; and they certainly don't live with the cost. But they are very good data collectors. They do their job according to the protocols and we need to be the ones to interpret the results. Asking them to deviate from what is accepted practice is asking them to take risk. It's not in their DNA.

 

Research doctors at major medical universities are different. They live for fame. They tend to be at the leading edge for a reason. They want to be. They are the ones who benefit not by towing the line, but by crossing it. Some get burned doing that (failed studies, patients who die on their watch) - but most just want to be the one who cures cancer. Thank God for these people. They are few in number and unique. Dr. Druker is one of them. So is Dr. Talpaz, Dr. Cortes and the rest.

 

We all benefit on this forum because we love to share what we have learned and what we have experienced. There is more collective knowledge on this forum than any one doctor can hold. 

 

At the end of the day, you are your own master. Choose who you trust and then go from there.


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"


#6 Buzzm1

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Posted 21 February 2017 - 08:42 PM

gianfranko, you are probably going to want to switch oncologists if your current oncologist is unwilling to discuss the issue; in the meantime could you summarize your wife's CML history for us.  


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

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#7 gianfranko

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Posted 21 February 2017 - 09:32 PM

Date	Treatment Time	Ratio	Log Reduction	IS (percent)	Source 	Lab
3/31/2010	0 / Diagnosis	3.234	0.106	323.4	Blood	Quest Diagnostics
6/15/2010	2.5 months	0.095	1.638	9.5	Blood	Quest Diagnostics
9/8/2010	5 months	0.008	2.730	0.8	Blood	Quest Diagnostics
12/1/2010	8 months	0.013	2.502	1.3	Blood	Quest Diagnostics
3/28/2011	12 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
4/11/2011	12.5 months	0.000167	N/A	0.0167	Blood	Moffit Cancer Center
4/27/2011	13 months	0.00515	N/A	0.515	BM	Genoptix
1/3/2012	24 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
4/1/2012	27 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
7/17/2012	30 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
10/9/2012	33 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
1/22/2013	36 months	N/A	N/A	0.097	Blood	Quest Diagnostics
4/1/2013	39 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
7/1/2013	42 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
10/15/2013	45 months	N/A	N/A	0.0472	Blood	Genoptix
12/30/2013	48 months	N/A	N/A	0.0866	Blood	Genoptix
3/25/2014	51 months	N/A	N/A	0.0658	Blood	Genoptix
6/1/2014	54 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
9/2/2014	57 months	PCR-U	N/A	0.0000	Blood	GenePath
12/10/2014	60 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
2/25/2015	63 months	N/A	N/A	0.035	Blood	Quest Diagnostics
5/20/2015	66 months	N/A	N/A	0.033	Blood	Quest Diagnostics
8/12/2015	69 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
12/1/2015	72 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
2/23/2016	75 months	N/A	N/A	0.047	Blood	Quest Diagnostics
5/17/2016	78 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics
11/8/2016	81 months	PCR-U	N/A	0.0000	Blood	Quest Diagnostics



#8 gianfranko

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Posted 21 February 2017 - 09:42 PM

Above is all the history for my wife's gleevec treatment.  Results look pretty solid since 2012.  There are a few hiccups in her PCR (01/2013, 10/2013 - 3/2014, etc.).  Are those ups and downs to be worried enough to not try cessation?



#9 gianfranko

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Posted 21 February 2017 - 09:46 PM

When I started seeing my second doc, switched docs for other reasons, he was a "keep hitting it hard doc". I had only been on Gleevec for around 5 months. After reading Chris and Joel's experiences I started talking with my doc, first about reducing. I reached PCRU and was taking 400mg Gleevec, I had discussions with him then about reducing, which he eventually agreed to, so after a year PCRU I reduced to 300mg. I then started talking to him about stopping, he wasn't keen on it at first but he eventually came round. He has since had a couple of other patients come off and willingly suggests it to them.

It may be slightly easier to stop here in Australia as we have run a number of STOP trials, so that might have helped convince him. Plus he knows I look into things a bit more than some of his other patients, my info coming from Trey, Chris, Joel and others here. He also knew that I would return to a TKI, if somewhat reluctantly, if the CML returns.

My doc still talks about mutation to me, which I find a bit odd, haven't seen anything like that come out of the STIM trials.

 

Ask the doc why they won't consider reduction etc, it might be there hasn't been enough trial information on it for them. You could show them this http://www.bbc.com/n...d-tyne-38680482

 

Thanks, I might just show him this and see what he says.  We found another oncologist with great reviews but he works in the same office as my wife's previous doctor.  Not sure how that would play...



#10 Buzzm1

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Posted 21 February 2017 - 09:49 PM

Above is all the history for my wife's gleevec treatment.  Results look pretty solid since 2012.  There are a few hiccups in her PCR (01/2013, 10/2013 - 3/2014, etc.).  Are those ups and downs to be worried enough to not try cessation?

thanks for the info gianfranko; your wife has been bouncing in and out of undetectable which doesn't lend itself to cessation but dosage reduction is still open to her.  Don't know if she has experienced the side-effects of Gleevec at full dosage, but as a rule, most of us felt remarkably better as we lowered our dosage.  


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


#11 gianfranko

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Posted 21 February 2017 - 09:51 PM

thanks for the info gianfranko; your wife has been bouncing in and out of undetectable which doesn't lend itself to cessation but dosage reduction is still open to her.  Don't know if she has experienced the side-effects of Gleevec at full dosage, but as a rule, most of us felt remarkably better as we lowered our dosage.  

Can we really just split the 400mg pill in half and half her take half pill?  She pointed out that the instructions say to not cut the pill



#12 Buzzm1

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Posted 21 February 2017 - 09:53 PM

Can we really just split the 400mg pill in half and half her take half pill?  She pointed out that the instructions say to not cut the pill

yes, you can split the pill ... in regards to cutting/splitting tablets 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


#13 Buzzm1

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Posted 21 February 2017 - 09:55 PM

one other thing gianfranko, approximately 38% of CML patients experience withdrawal symptoms when they either lower their dose, or attempt cessation.  They usually dissipate with time.  


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


#14 gianfranko

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Posted 21 February 2017 - 09:56 PM

yes, you can split the pill ... in regards to cutting/splitting tablets http://bit.ly/1oHD09v

So then the question becomes: do we just unilaterally lower her dosage or keep seeing doctors until one agrees it's worth a try?



#15 Buzzm1

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Posted 21 February 2017 - 10:09 PM

 status in a short period of timeSo then the question becomes: do we just unilaterally lower her dosage or keep seeing doctors until one agrees it's worth a try?

gianfranko, your wife is in a position to safely lower her dosage; of those who relapse in cessation, they invariably regain their undetectable status after restarting; the same would apply with a lowered dosage.  Not all of us here required an agreement by our oncologist to lower our dosage.  


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


#16 Buzzm1

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Posted 21 February 2017 - 10:51 PM

gianfranko, if your wife is worried about abruptly going down to 200mg, she can go down to 300mg first by alternating a whole tablet, and half a tablet, an average of 300mg.


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


#17 Buzzm1

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Posted 22 February 2017 - 03:03 AM

gianfranko, if she hasn't done so already, your wife is scheduled to test again  It will be interesting to see the result.  Looking again at her history, there is a significant level to the bounces, although the level could be lessening ... time will tell.   


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


#18 gianfranko

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Posted 22 February 2017 - 07:37 AM

gianfranko, if she hasn't done so already, your wife is scheduled to test again  It will be interesting to see the result.  Looking again at her history, there is a significant level to the bounces, although the level could be lessening ... time will tell.   

 

According to the doctor, this month's results show her as PCR-U.  But I won't believe it until I see the report.  It has happened in the past, when looking at results, that they looked at the wrong PCR date.  So I don't put it on the spreadsheet until I see the report.



#19 MACELPatient

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Posted 22 February 2017 - 11:19 AM

I have found that you are your own best advocate and it may take some convincing to get your Dr to lower your dosage.  I started on 400mg of Gleevec and remained on that for ~6yrs.  I knew through my own research that I should not have any issues and if so I could always bump back up.  A year ago I dropped down to 300mg and did that for 6mo with no change in my CBC/FISH results.  I have since dropped down to 200mg and feel I am doing great,  Next appointment is upcoming and I expect the same results.  I'm not sure what my dosage end game is but I am sure I will at some point want to attempt cessation but I'm not mentally there yet even after 7 years,



#20 TeddyB

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Posted 22 February 2017 - 02:20 PM

Can we really just split the 400mg pill in half and half her take half pill?  She pointed out that the instructions say to not cut the pill

 

No problems splitting for me, just get it down fast so you dont feel the taste. I am now using the 100mg tablets, taking 4 each day, maybe that is an easier option if you are going the 300mg route.






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