Member
Posted 28 June 2016 - 10:18 AM
Hello All,
I've been off and on the forum lately. Mostly just checking in on people and looking for other "turtles" here and there to encourage. I was dx'd in December of 2010 and have been through a medicine change and multiple month plateaus in different areas of the International Scale. The past year I've been bouncing around between .1 and .2 and this latest taste finally brought me to 0.06 on the IS. Stable is good! Keep up the good fight. -Josh
Advanced Member
Posted 28 June 2016 - 10:30 AM
Congratulations JoshLee, it was a long time in coming, but it did come. Wishing you continuing progress.
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 28 June 2016 - 10:42 AM
Congrats on MMR!!! I am about 8 months into treatment approaching my 9 month PCR soon. I am trying to prepare myself for the possibility that I may be a turtle like so many others. Posts like yours are really encouraging and help to ease my anxiety about the possibility. I started at 87% and was 1.2% at my 3Month PCR and 0.6% ay my 6Month PCR. I am very anxious for my 9 Month PCR and trying to prepare myself for the fact that I may not have much of a significant drop and may not reach MMR by 12 or 15 months.
Advanced Member
Posted 28 June 2016 - 11:39 AM
See, even Turtles finish the race, congrats! 
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 28 June 2016 - 09:46 PM
New Member
Posted 02 July 2016 - 08:04 AM
Great news. Glad to hear you had a medical team to stick with your treatment. Go have a drink.
Advanced Member
Posted 02 July 2016 - 09:08 AM
Advanced Member
Posted 02 July 2016 - 03:08 PM
Advanced Member
Posted 02 July 2016 - 03:29 PM
Member
Posted 02 July 2016 - 04:27 PM
Advanced Member
Posted 02 July 2016 - 06:46 PM
Congrats, JoshLee!! Slow and steady. . .we turtles do make progress.
Jerry.s --I switched from Gleevec to Sprycel after about a year and a half. On Sprycel, my numbers immediately started to drop. After about 2 and a half years on Sprycel, I reduced my dose to 50 mg (multiple pleural effusions), and my numbers are holding at a low level, though not PCRU. I was diagnosed in '09.
If you do make a switch to Sprycel, you might want to consider starting with half dose for a few weeks to alleviate the Sprycel headache. I made that suggestion to my doc, and he was fine with it. Too bad I then went up to 100 mg, which led to the p.e. That said, 100 mg really sent my numbers down fast.
Good luck!
Advanced Member
Posted 02 July 2016 - 08:09 PM
Advanced Member
Posted 07 July 2016 - 03:10 PM
Member
Posted 08 July 2016 - 09:52 AM
Advanced Member
Posted 08 July 2016 - 12:24 PM
Advanced Member
Posted 08 July 2016 - 12:30 PM
Oh, OK, thanks. Is 140 a common dose? I thought 100 was the highest for Sprycel....
Sprycel 100mg is the standard dose; Sprycel 140mg is the high dose prescribed when resistance to Sprycel 100mg is experienced, much the same as when Tasigna 800mg is prescribed when there is resistance to the standard dose of Tasigna 600mg, or when Gleevec 800mg, or Gleevec 600mg, is prescribed when there is resistance encountered to the standard dose of Gleevec 400mg. Resistance to any one TKI does not automatically translate to resistance to any other TKI as some seem to be led to believe.
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 08 July 2016 - 11:16 PM
It took a second opinion for my regional onc. To consider switching my meds. I was stalled out at 1% for a few years actually. However, I never lost CCyR which is why my onc never wanted to switch me. I finally switched meds and immediately started see a decrease in my numbers. There is no harm in switching meds however when I emailed Dr. Druker about my situation he wrote back saying that a stable CCyR over a few years is just as good as MMR. He told me he had several patients in his practice that are in that boat. The longer you are stable the more of a likely hood you have that you will stay stable. I also think that it can be tough for younger people to hit deep milestones quickly because we metabolize drugs differently or perhaps the disease biology is different.
My onc also told me stable CCyR is an acceptable outcome and doesn't require switching meds or anything.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
Member
Posted 13 July 2016 - 12:49 PM
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Posted 19 July 2016 - 06:03 AM
Well done JoshLee on this important milestone!! It must feel great. Wishing you continued success.
Vanessa
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