Saw this announcement on the home page. Interesting that no drug companies are involved. I haven't been able to open the page up. I am hoping my cancer center is on the list. If not I intend to ask why they aren't!
Has anyone had luck opening the page?
https://curecml.org/
Started by
rcase13
, Sep 26 2017 06:51 AM
13 replies to this topic
#1
rcase13
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Posted 26 September 2017 - 06:51 AM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#2
Liamsdad
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Posted 26 September 2017 - 07:53 AM
I got it to open - here is the list of participating institutions:
Fred Hutchinson Cancer Research Center
Huntsman Cancer Institute
H. Lee Moffitt Cancer Center & Research Institute
Medical College of Wisconsin
MD Anderson Cancer Center
Oregon Health & Science University
John Theurer Cancer Center at Hackensack University
Winship Cancer Institute of Emory University
University of Chicago Comprehensive Cancer Center
Princess Margaret Cancer Centre
Memorial Sloan Kettering Cancer Center
Duke Cancer Institute
Weill Medical College of Cornell University
Barbara Ann Karmanos Cancer Institute
UCSF Helen Diller Family Comprehensive Cancer Center
Roswell Park Cancer Institute
Dana-Farber Cancer Institute
Diagnosed 10/02/2015
Started Gleevec 400 mg 10/29/2015
10/29/2015 - 105% IS
01/28/2016 - 5.6% IS
02/02/2016 - 1.31% IS
04/21/2016 - 0.33% IS
07/29/2016 - 0.36% IS
10/10/2016 - 0.26% IS
01/11/2017 - 0.16% IS
04/03/2017 - 0.037% IS
06/20/2017 - 0.020% IS
07/24/2017 - 0.34% IS - switching to Tasigna
10/26/2017 - 0.47% IS - off Tasigna and now being switched to Sprycel
#3
scuba
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Posted 26 September 2017 - 08:10 AM
I was successful. I participated in the survey and sent an email inquiry. Thanks for the link.
Here is the survey:
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"
#4
r06ue1
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Posted 26 September 2017 - 08:17 AM
Well, the drug companies definitely don't put their money into researching cures, that is a fact, but they do from time to time send money to the universities and that does help the universities develop the cures. Its kind of a lose-lose situation for them if you think about it, spend a lot of money to lose a lot of money in the end, all part of the system.
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
r06ue1
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Posted 26 September 2017 - 08:31 AM
Completed survey
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
#6
rcase13
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Posted 26 September 2017 - 09:37 AM
Completed survey and for importance of cost of CML drugs i put not very important at all... 
Just Kidding...
I can't imagine anyone clicking anything other than very important.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#7
Jan0080
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Posted 26 September 2017 - 10:17 AM
Completed. My co-pay is $200 pre month. It will be higher when I am on Medicare.
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.
#8
ROMO
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Posted 26 September 2017 - 04:46 PM
That was an easy survey. The answers are obvious.
I did however add this in a comments box;
TKI's are a medical advancement for all targeted therapies in cancer research.
Why must CML patients be saddled with a burden of disproportionate expense for
this medicine, that was funded research as an orphan disease by tax payer money?
Romo
DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
Sprycel 100mg.
PCR 02/01/2017 0.146 IS
PCR 08/07/2017 0.022 IS
Next PCR: 12/XX/2017
#9
mscl
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Posted 26 September 2017 - 07:27 PM
Completed survey.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#10
Pin
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Posted 27 September 2017 - 04:51 AM
It's so nice to be asked what we think. Some of the questions were interesting, defining what I personally think of as a "cure" in CML was thought-provoking.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#11
Red Cross Kirk
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Posted 27 September 2017 - 10:34 AM
Completed survey. I've been paying $0 since the switch to generic imatinib due to the kickback from the manufacturer. Hopefully they'll keep this up because my new insurance plan has a 30% copay. The previous insurance had a $100 max copay.
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#12
kat73
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Posted 02 October 2017 - 01:22 PM
Rats. I thought I'd have a chance to qualify my answer to the expense question. This was a pretty flawed survey, and one of the flaws was this question. I, personally, have NO difficulty paying for my TKI because I am that luckiest person on earth, the Blue Cross/Blue Shield Federal Plan patient. But what about everybody else? And what about when my incredibly fabulous health insurance is ultimately taken away from me because it's unsustainable and I have to scramble like everybody else? Wish I could take my answer back!
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.
#13
r06ue1
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Posted 03 October 2017 - 06:29 AM
Agreed Kat, I am one of those lucky enough to have a crazy plan from my work; with the $10 copay card this year I paid nearly nothing for not only my medicine but also for my health insurance (copay card paid my deductible and my out of pocket max for the year). Most are not so lucky to have these kinds of options which is why I rail against Big Pharma (who was kind enough to pay my medical expenses this year), mostly over seniors having to pay such huge amounts compared to those with private insurance. The only reasons I have been able to come up with for the price gouging of seniors is: 1) they want to extract as much wealth out of seniors before they die as possible and 2) they do not want to support government paid healthcare system and are doing everything they can to dismantle it.
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
#14
kat73
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Posted 03 October 2017 - 10:25 AM
It's all just so, so, so crazy.
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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