34 replies to this topic

[gianfranko]

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.

[Gail's]

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.

[mikefromillinois]

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

[gerry]

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

[scuba]

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.

[Buzzm1]

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.  

[gianfranko]

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

[gianfranko]

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?

[gianfranko]

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...

[Buzzm1]

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.  

[gianfranko]

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

[Buzzm1]

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

[Buzzm1]

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.  

[gianfranko]

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?

[Buzzm1]

 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.  

[Buzzm1]

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.

[Buzzm1]

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.   

[gianfranko]

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.

[MACELPatient]

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,

[TeddyB]

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.