Cessation with <0.01%
#21
Posted 17 April 2016 - 07:11 PM
There is an interesting review of the Australian trials which shows that in the end only around 5% will actually be able to successfully come off. The achievement of PCRU while on Gleevec was added into the review.
#22
Posted 18 April 2016 - 09:40 AM
Overall the point is this. Cessation will not be a choice for most CML patients, so we should not get everyone's hopes up only to have them dashed into pieces. Long term drug dosage reduction is far more successful and improves quality of life. For those who succeed at cessation we are all happy for them, but their numbers will be very few. But most of the rest will also have a good quality of life. I like to remind people that these drugs saved about 75% of our lives, and for the remaining who would have survived a BMT, they would have severe graft vs host disease, and GVHD is a long term quality of life inhibitor. I think perspective is important, especially for the majority who should not expect cessation to succeed.
#23
Posted 18 April 2016 - 09:56 AM
Agree with Trey, if you can lower your dosage after being undetectable (or near it) for a long time then that in my opinion is the safer route. Who knows though, in a few years there could be a breakthrough and then none of us will have to deal with it any longer.
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
#24
Posted 18 April 2016 - 10:51 AM
Very good, sensible advice, Trey, and clearly put.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#25
Posted 18 April 2016 - 12:06 PM
Ok, I get it. General consensus, I'm a fool and my onc is an idiot. Just for the record, I am fully aware of the risks and didn't come to this decision lightly. It's took me several months of weighing the pros and cons. I also get that this is NOT a decision that should be made for everyone, or even most. Personally, the damage done to my heart, kidneys and pancreas by the TKI's has reached a point that if I could even manage to hold for a year or two in TFR, it could mean the long term difference in my quality of life or even length of survival. I will pop back in and let you all know if/when I lose PCRU and how it all went. Until then I wish you all the best that life can offer.
I PRAY ONE DAY A CURE FOR US ALL
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
#26
Posted 18 April 2016 - 01:15 PM
I don't think there is a consensus - I certainly don't agree with Trey on cessation. I'm with you on the damage TKI's are likely doing to our organs especially the heart and liver. Over time it's best to get off these drugs - if we can. And we're better off trying rather than not trying.
I like your approach of taking 20mg Sprycel every other day. I may try that when I am one month away from my next PCR. I'll keep trying for the lowest dose - hopefully zero some day that keeps me at PCR < 0.01%
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"
#27
Posted 18 April 2016 - 02:17 PM
Ok, I get it. General consensus, I'm a fool and my onc is an idiot. Just for the record, I am fully aware of the risks and didn't come to this decision lightly. It's took me several months of weighing the pros and cons. I also get that this is NOT a decision that should be made for everyone, or even most. Personally, the damage done to my heart, kidneys and pancreas by the TKI's has reached a point that if I could even manage to hold for a year or two in TFR, it could mean the long term difference in my quality of life or even length of survival. I will pop back in and let you all know if/when I lose PCRU and how it all went. Until then I wish you all the best that life can offer.
I PRAY ONE DAY A CURE FOR US ALL
vwoyak, after 5 years of PCRU, you have a better than average opportunity to be TKI Free, something that we all wish for; avail yourself of that opportunity. Worst case, should you fail, you regain PCRU and return to a very low TKI dose, something we should all wish for in lieu of being TKI Free. These are toxic drugs and they can cause damage to our organs, if they haven't already. For you not to take this opportunity would be the mistake. Good Luck to you.
PS: should I fail cessation when my opportunity arises, my next goal will be to be on Sprycel 10mg every other day ...
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
#28
Posted 18 April 2016 - 03:30 PM
I don't think there is a consensus - I certainly don't agree with Trey on cessation. I'm with you on the damage TKI's are likely doing to our organs especially the heart and liver. Over time it's best to get off these drugs - if we can. And we're better off trying rather than not trying.
I like your approach of taking 20mg Sprycel every other day. I may try that when I am one month away from my next PCR. I'll keep trying for the lowest dose - hopefully zero some day that keeps me at PCR < 0.01%
the 20mg every other day was my onc's idea. Over the years (once I reached PCRU) he took me from 100mg to 50 mg to 25mg then 20mg and finally in December of 2014 to 20mg every other day. At first the reductions were done after I developed severe complications (like pericardial effusion) and I didn't lose PCRU when I was taken off the Sprycel until the complication was brought under control. Then when I held on 20mg but was still having some real problems with the neuropathy and balance issues (took a fall severe enough I wound up in a wheelchair for several months) he said "It's your decision but what do you think....."and of course i jumped (figuratively) at it. Even on this dose the damage, tho slowed, has continued to my pancreas and kidneys.
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
#29
Posted 18 April 2016 - 03:35 PM
vwoyak, after 5 years of PCRU, you have a better than average opportunity to be TKI Free, something that we all wish for; avail yourself of that opportunity. Worst case, should you fail, you regain PCRU and return to a very low TKI dose, something we should all wish for in lieu of being TKI Free. These are toxic drugs and they can cause damage to our organs, if they haven't already. For you not to take this opportunity would be the mistake. Good Luck to you.
PS: should I fail cessation when my opportunity arises, my next goal will be to be on Sprycel 10mg every other day ...
we wanted to go down to 10 mg but Sprycel doesn't come in 10's (or maybe my insurance doesn't carry them?) and my insurance's specialty pharmacy couldn't split them and my onc didn't want me doing it because they are already so tiny so the next best was to go 20 every other day.
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
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