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BMB, FISH and new CMR levels

Started by r06ue1 , Jan 14 2016 06:32 AM

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31 replies to this topic

#21 scuba

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Posted 21 January 2016 - 08:57 AM

They are running trials in the UK (Hammersmith) on people with low levels of CML, under MMR, to see if they can stay at the same level while off the TKI.

That is essentially what I did. I had low level residual disease that fell below 0.01 and was termed "undetected" on a few reports. Once I started my own personal trial (with Dr. oversight and monthly PCR tests), my PCR levels slowly increased, but not in a straight line. One month there was a sharp uptick and then the following month a sharp drop - all within the one log precision of the test and all below MMR. The decision was to continue my personal trial (Dr. was intrigued that I was 'stable'), but when the last two tests showed back to back bump ups, I decided to resume my low level Sprycel (20mg) and "verify" that my 'bouncing' PCR's would fall back down.

And they did, by more than a log. I'm borderline PCRU again just where I was when I tried to stop. (i.e. <0.01%). It took nine months to creep up and two months to fall back. Next test won't be until March and if I am PCRU, I will try cessation again....and then again .... and again ... until it sticks.

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"

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#22 Buzzm1

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Posted 21 January 2016 - 10:54 AM

During an internet search I stumbled across another CML article website http://cml-iq.com

one of the articles I scanned through of long-term stop-study-data (of which there is very little information available) showed that the percentage of relapses had increased to as high as 70% ... http://bit.ly/1QoMMbB

from another study: about 1 in 4 remained in TFR (Treatment-Free Remission) after five years.

this indicates that the odds of remaining TFR long-term are low, and even if we achieve TFR, the odds are high that we will have to resume a TKI dosage at some time in our future.

this lends itself to taking the amount of TKI necessary to achieve PCRU/TFR, and when, and if, loss of MMR occurs, resume that amount of TKI necessary to again achieve PCRU/TFR ...

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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#23 kat73

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Posted 21 January 2016 - 11:44 AM

Thanks, Buzz, for this. It was very clear and helpful, plus it answered my question that when they're talking about "deep molecular response" they mean 4.5 log (.005). I haven't consistently put together two years of that yet, so I'm caterwauling for nothing. Too bad I don't live near Hammersmith, England!

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.

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#24 kat73

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Posted 21 January 2016 - 11:59 AM

Buzz - Just did a fast search and couldn't find anything about the Hammersmith MMR study - do you have a link?

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.

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#25 Buzzm1

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Posted 21 January 2016 - 12:07 PM

Buzz - Just did a fast search and couldn't find anything about the Hammersmith MMR study - do you have a link?

pick your poison ... hammersmith cml study

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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#26 kat73

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Posted 21 January 2016 - 01:09 PM

Buzz - I'm sorry - it wasn't you who referenced the MMR Hammersmith study, it was Gerry. At any rate, I can't find anything, in your search or mine. Gerry - where did you read that?

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.

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#27 gerry

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Posted 21 January 2016 - 04:01 PM

From what I remember it is part of the Destiny trial. I will have a closer look later today. There is possibly more information on it on the UK CML forum run by Sandy.

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#28 gerry

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Posted 21 January 2016 - 04:58 PM

http://www.cmlsuppor...-trial-now-open

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#29 gerry

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Posted 21 January 2016 - 05:05 PM

Update for October 2015.http://www.cmlsuppor...-enrolled-trial

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#30 kat73

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Posted 21 January 2016 - 07:35 PM

Thank you so much, Gerry! I had forgotten about DESTINY. I remember when they were talking about opening it, but I didn't remember that it had only MMR as its requirement. I am very antsy now that I'm 6 years out. I want so badly to stop taking the pill that makes me feel crummy. But I can't get my numbers down far enough and long enough to get my onc's agreement to stop. But I've definitely stayed under MMR since 2012. I guess we'll see.

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.

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#31 gerry

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Posted 21 January 2016 - 11:26 PM

kat,

Good luck with the doc. What dosage are you on, just wondering is there a way to lower it without the CML increasing beyond MMR?

I felt the difference between 300 and 400 of Gleevec in regard to side effects.

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#32 kat73

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Posted 22 January 2016 - 05:29 PM

Gerry - I am on Sprycel 70 mg. I have asked if I could go down to 50 or 20, but onc says no. He's not a big fan of lowered dosages. I have not wanted to engage him in the false antibiotic resistance analogy - he said once, "How do you think we induce resistance in order to study it in the lab? We continually lower the dose." He's more amenable to stopping completely than lowering the dose. But I'm pretty sure he wouldn't let me even consider stopping yet, as I hover between MR 3.5 and MR 4. Had one undetectable, but I think it must have been an anomaly.

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.