Advanced Member
Posted 30 September 2016 - 04:33 PM
Had my onc appt a few weeks back. Got my results back on Monday, not detected!! That has been 2 years now at my new onc here in Colorado. I was also undetected in Oklahoma before moving to Colorado.
So I am now the 21st patient my oncologist has on the cessation trial. I go back for my first follow up appt in 2 months.
Advanced Member
Posted 30 September 2016 - 04:42 PM
This is so great, cleoclans! Continue to keep us posted!
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.
Advanced Member
Posted 30 September 2016 - 05:40 PM
Hey, Cleocans. . .Congratulations!
What part of Colorado are you in, Denver? I used to live in Lakewood. Now in Salida.
Marnie
Advanced Member
Posted 30 September 2016 - 07:10 PM
Congratulations cleoclans; wishing you the best of luck in maintaining PCRU. For the benefit of all here, would you be so kind as to post your history; i.e. when you were diagnosed and when you first reached and maintained PCRU. Thanks in advance.
What is the name of the trial you are in?
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
Advanced Member
Posted 30 September 2016 - 07:24 PM
Very Cool!
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"
Advanced Member
Posted 30 September 2016 - 07:25 PM
I was also undetected in Oklahoma before moving to Colorado.
Studies have shown that being undetectable after moving across state lines is a good sign that cessation will work.*
That is a joke.
Advanced Member
Posted 30 September 2016 - 07:32 PM
Keeping my fingers crossed for you.Had my onc appt a few weeks back. Got my results back on Monday, not detected!! That has been 2 years now at my new onc here in Colorado. I was also undetected in Oklahoma before moving to Colorado.
So I am now the 21st patient my oncologist has on the cessation trial. I go back for my first follow up appt in 2 months.
Advanced Member
Posted 30 September 2016 - 07:38 PM
Hey Marnie I live in Aurora.
Buzzm1, yeah after I posted earlier I thought that I should of included my history!
Scuba, thank you!
I was diagnosed in July 2011. I started 100mg Sprycel 2 days after diagnosis and have been on it until last Monday. My PCr dropped down fairly quickly (don't have my numbers can't find the folder atm). I then hit the lovely plateau. It was either late 2013 or early 2014 when I got my first undetected.
I don't think they have a name for this trial. The BMT department at my cancer center gives their patients the option of cessation after 2 years of undetected.
I'm hoping it will work but I will be happy for however long I get to be drug free. Dosage reduction is on the table if I have to restart my meds.
Advanced Member
Posted 30 September 2016 - 07:39 PM
Studies have shown that being undetectable after moving across state lines is a good sign that cessation will work.*
That is a joke.
Haha, I hope that is true!
Thank you Gerry!
Advanced Member
Advanced Member
Posted 30 September 2016 - 08:21 PM
Advanced Member
Posted 01 October 2016 - 02:28 AM
Congratulation Cleo, Good Luck
Advanced Member
Posted 01 October 2016 - 08:42 AM
So excited for you! Hope it is successful for you!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 02 October 2016 - 10:10 PM
Advanced Member
Posted 09 October 2016 - 11:26 AM
Congratulations! That is wonderful news. Keep up posted on your continued cessation .
Sandy
Advanced Member
Posted 10 October 2016 - 01:02 PM
Sending positive energy in your direction.
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
Advanced Member
Posted 29 November 2016 - 03:53 PM
Looks like it's back to my meds. My 2 month check up was detected 0.33%, I lost MMR. Hopefully I will be able to go on a lower dose when I get it back down.
Advanced Member
Posted 29 November 2016 - 04:01 PM
Looks like it's back to my meds. My 2 month check up was detected 0.33%, I lost MMR. Hopefully I will be able to go on a lower dose when I get it back down.
Sorry to hear that Cleocans. Wishing you the best at getting it back down and going on a lower dose.
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
Advanced Member
Posted 29 November 2016 - 04:38 PM
Bummer 
This might cheer you (& me) up a little:
https://ash.confex.c...Paper89941.html
Conclusion: TKIs could safely and successfully be discontinued a second time in CML pts despite a 1st failure.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Advanced Member
Posted 29 November 2016 - 05:04 PM
cleoclans - You must be so disappointed. I know you will get right back down again to undetectable and then you can try again another day, as Buzz points out. Also, one of these days they're going to be able to figure out how to prognosticate who can go TFR and who can't, without putting people through the wringer of this trial and error method. It's terrible to get your hopes up and then have them dashed. Too much emotional turmoil! In the meantime, TRY and see this: apparently, Sprycel REALLY works for you, keeping you at undetectable for so long and so consistently. That's a really good thing, and something that a lot of us would love to experience. Hang in there.
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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