Talk of it curing CML:
Striving to vanquish leukemia
https://www.novartis...nquish-leukemia
ABL001 Update
Started by
r06ue1
, Mar 28 2017 10:18 AM
20 replies to this topic
#1
r06ue1
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Posted 28 March 2017 - 10:18 AM
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
#2
TeddyB
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#3
Gail's
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Posted 31 March 2017 - 04:11 PM
Thanks. Interesting stuff. I did notice that the first article posted kept referring to resistance. Something I thought was disproved.
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
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
#4
gerry
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Posted 01 April 2017 - 05:12 PM
Some of the evidence from the Stim trials etc shows that CMLers who had to swap TKIs due to it not working for them were likely to fail TFR.
#5
Trey
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Posted 01 April 2017 - 06:00 PM
....the first article posted kept referring to resistance. Something I thought was disproved.
TKI resistance is a real concept. The "disproven" part is that low dosage could cause drug resistance.
#6
jmoorhou
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Posted 01 April 2017 - 09:37 PM
That's the most positive article I have read about this.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#7
kat73
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Posted 03 April 2017 - 06:20 PM
Gail's - Yeah, that resistance thing caught my ear . . . I always thought once you hit deep response (say, MR4) you didn't have to worry about resistance. Also, if a mutation hadn't reared its ugly head in the first two years of treatment, you were probably home free. I'm beginning to question everything. Come on, ABL001 - hurry up!
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.
#8
r06ue1
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Posted 04 April 2017 - 06:48 AM
Once you hit MMR and make it two years I believe the chance of progressing is 5% or less (Dr. Druker even mentioned it might be 0% with current medicaitons).
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
#9
kat73
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Posted 04 April 2017 - 08:37 AM
So . . . let me see if I've got the big picture right: Resistance is not a problem unless it becomes one. And side effects are not a concern great enough to stop taking a TKI until they become so. Gee, I'm so relieved now.
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.
#10
JPD
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Posted 27 April 2017 - 03:49 PM
So . . . let me see if I've got the big picture right: Resistance is not a problem unless it becomes one. And side effects are not a concern great enough to stop taking a TKI until they become so. Gee, I'm so relieved now.
LOL - live till ya die!
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#11
r06ue1
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Posted 11 July 2017 - 11:47 AM
A few updates on ABL001.
Now in Phase 3:
https://clinicaltria...how/NCT03106779
Basically added Bosulif users to their target list, all other requirements are the same as the previous trials and is not yet open but probably will be sometime this year.
A Phase 1 trial is open and taking anyone (healthy) for a single dose (lol!):
https://clinicaltria...how/NCT02857868
If you live in Florida or Minnesota, might be worth asking about though the healthy requirement may exclude us.
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
#12
r06ue1
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Posted 11 July 2017 - 11:51 AM
Also ABL001 now seems to have a name:
Drug: ABL001
40 mg tablets will be taken orally twice a day (BID)
Other Name: asciminib
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
#13
kat73
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Posted 11 July 2017 - 03:27 PM
Is that a hard "c" or soft "c"? Or should we vote? 
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.
#14
jmoorhou
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Posted 11 July 2017 - 05:46 PM
Does anyone know when this is going to be available for us?
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#15
IGotCML
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Posted 15 July 2017 - 12:01 PM
On the Phase 3 study, it states
Estimated Study Completion Date: February 29, 2024
Does this mean that Phase 4 cannot proceed until Phase 3 is over in 2024? If so, no one will be getting this drug soon.
#16
Jan0080
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Posted 15 July 2017 - 12:28 PM
Phase 2 shows that it works, phase 3 determines if it is better than existing drugs if so than apply for FDA approval. Phase 4 is after the drug starts to be sold, is there anything more that we need to know?
https://www.cancer.o...cal-trials.html
https://www.cancer.o...cal-trials.html
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#17
kat73
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Posted 15 July 2017 - 01:03 PM
Just a wild guess here: Perhaps what might happen would be that midway through Phase 3 the results are so plainly better than existing protocols they apply to the FDA for early release. I believe this is what happened originally with Gleevec? Still, even under the best case scenario it will be a longer time before it's studied and possibly approved as first-line therapy. I guess if they could show it was really and truly a cure, that would be game-changing. I'm going to be so old when they get CML vanquished without TKI's that when they let me go off them I won't even notice a difference - I STILL won't be able to go up stairs!
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.
#18
tiredblood
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Posted 15 July 2017 - 04:44 PM
LOL, Kat73, me too. It will be like I missed my 50's and fast forwarded to a later decade in life.
#19
kat73
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Posted 16 July 2017 - 02:26 PM
I've definitely lost an extra decade. When I was 58 I looked 48 and now that I'm 66 I look 76. Hey, I wonder what would happen if we got a facelift and then came off TKI's because we were cured. Would our faces go SPROINNGGG!?
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.
#20
Gail's
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Posted 16 July 2017 - 02:46 PM
Haha kat73! So, on that note, I'm getting my eyelids done in September. Officially it's medically indicated due to reduced vision. I asked about "sproinngg" when I don't have the tki induced edema, and the 2 plastic surgeons I saw said it's not a worry. I didn't want to have such a wide open eyes look that people thought I was shocked or experience dry eyes. Both docs said no problem on either count because they do conservative surgery, and because my skin is likely to gradually droop again since I'm older. On the up side, the plastics guy is asking my onc if I can be off the tki for a month before and a month after surgery. Excited to see if I maintain my deep response during that time.
I'll keep you guys posted.
I'll keep you guys posted.
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
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
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