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Nearly 6 years in...Finally *Officially* MMR


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#1 JoshLee

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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



#2 Buzzm1

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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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 JohnFromChicago

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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.



Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg


0 Month PCR = 87%

3 Month PCR = 1.2%

6 Month PCR = 0.64%

9 Month PCR = 0.26%

12 Month PCR = 0.21%

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.05%

24 Month PCR = 0.04%

27 Month PCR = 0.01%

#4 r06ue1

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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


#5 Melanie

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Posted 28 June 2016 - 09:46 PM

Fellow turtle, congrats! You're so right...stable is good! So happy for you!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#6 mike43147

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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.



#7 Jerry.s

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Posted 02 July 2016 - 09:08 AM

I my been about 18 months for me and gleevec I been found down but I've had two small increase not in a row but the docter wants me to switch meds to sprycel . Did any of you make the switch right away or did they just keep on the same meds and waited ?
10/2014 100% Gleevec 400mg
03/2015 1.72%
05/2015 0.86%
10/2015 0.47%
01/2016 0.46%
06/2016 0.85%

#8 gerry

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Posted 02 July 2016 - 03:08 PM

You could give it a month and have another test to see if it a trend rather than a blip.

#9 thatguy

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Posted 02 July 2016 - 03:29 PM

Nice!
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#10 JoshLee

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Posted 02 July 2016 - 04:27 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.

#11 Marnie

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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!



#12 Gail's

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Posted 02 July 2016 - 08:09 PM

Jerry s, I switched from gleevec to sprycel at 1 year for suboptimal response. The first month on sprycel I went rom 0.38 to .0.03, quite a drop! Nausea much better, still some diarrhea, and have headaches and pretty profound fatigue. I'm glad I switched.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 thatguy

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Posted 07 July 2016 - 03:10 PM

Hey Josh, what did you finally switch to? Thanks
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#14 JoshLee

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Posted 08 July 2016 - 09:52 AM

I started my journey on Tasigna ......stalled out at 1% for two years but always had 0% BMB then went to U Mich for second opinion and switched to 70 mg Sprycel. Dropped down to .4 and stayed for a few years or so then bumped to 140 mg and slowly trended downwards ....SLOWLY

#15 thatguy

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Posted 08 July 2016 - 12:24 PM

Oh, OK, thanks. Is 140 a common dose? I thought 100 was the highest for Sprycel....
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#16 Buzzm1

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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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#17 beno

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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


#18 JoshLee

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Posted 13 July 2016 - 12:49 PM

I wouldn't go as far to say that 140mh is prescribed to those that are drug resistant....if you are resistant to a drug it doesn't matter how much you take....it won't work. My personal belief is that everyone's body handles these drugs differently based on their ability to absorb and metabolize.

#19 nia.435

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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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