Saw an advertisement on TV the other day, guess Novartis is getting sued.
https://www.google.c...1.0.tJOT0AzUKJ4
Posted 10 November 2017 - 08:01 AM
Saw an advertisement on TV the other day, guess Novartis is getting sued.
https://www.google.c...1.0.tJOT0AzUKJ4
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
Posted 10 November 2017 - 11:23 AM
Wow. And what else will we learn, over time?
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.
Posted 10 November 2017 - 01:20 PM
Nice I am on full dose Tasigna. I get yearly echos and EKGs every visit. So far all have been normal and no trends. Do these tests detect Arteriosclerosis? If not what test should we be doing to detect it?
Should we switch to Bosutinib?
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Posted 10 November 2017 - 08:33 PM
Posted 10 November 2017 - 08:54 PM
I had a physician friend of mine who had serious complications from baby aspirin. Every drug has risk. We need our TKI's. These type of lawsuits is part of the reason that our meds cost so much. I cannot comment on the relative safety of Gleevec versus Sprycel versus Tasigna. These lawsuits tend to enrich the attorneys with little other public policy benefit.
Posted 11 November 2017 - 12:51 AM
Posted 13 November 2017 - 07:19 AM
The lawsuit is over Novartis' failure to warn users over the atherosclerosis which they knew about (for at least 5 years) but decided to not inform the public of the danger. The legal system is in place to punish individual or corporation that put people in danger without warning.
And yes, lawyers are in business to make money, just as the big pharmaceuticals are in business to sell their product to as many consumers as possible. We are all part of the system (to make money), most just don't want to admit to 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
Posted 13 November 2017 - 10:28 AM
Good point ro6ue1.
I'm new to Tasigna ( hopefully to resolve a severe pleural effusion) and will have a CBC and CMP every two weeks for two months, and an EKG repeated every 12 weeks. Because I have a carotid artery blockage that my vascular surgeon is monitoring, I've questioned if I need an ultrasound more often than twice a year to rule out the possibility that my blockage is getting worse.
I would much rather know all the risks associated with our TKI's to be able to have meaningful conversations with my oncologist. There are so many moving parts to treatment so up to date information is vital.
Posted 13 November 2017 - 05:06 PM
I just started taking Tasigna.
This lawsuit does concern me.
If it does cause several different diseases then I want to know more about this.
I had 2 EKG's and I have only been on Tasigna for 3 months.I am on 600 mgs.(Started on 800).
This Atherosclerosis may also lead to other diseases including Coronary Heart Disease, Carotid Artery Disease, Peripheral Artery Disease, and Chronic Kidney Disease,...then I want to know what tests I should be receiving to find out if I am being affected by this drug.
I don't think 2 EKGs (1 before treatment and 1 after) is going to analyze the diseases listed.
I know people can have reactions to all sorts of things like baby aspirin...where freak reactions happen, but if this drug is causing these serious problems and they are just now discovering it then I would like to know more about it.
I know lawyers and pharmaceutical companies make money, and that is their main concern,...but my main concern is- COULD TASIGNA CAUSE THESE PROBLEMS AND GO UNDETECTED BECAUSE THERE ISN'T A TEST TO DETERMINE THESE PROBLEMS.
In quoting RC13...." Do these tests detect Arteriosclerosis? If not what test should we be doing to detect it?"
If anyone has any serious information about these problems, or tests that could be run, please share.
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
Posted 13 November 2017 - 05:39 PM
carrie - see Dr. Mauro's recent slide presentation, pp 11-12, particularly.
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.
Posted 13 November 2017 - 08:17 PM
Posted 20 November 2017 - 04:44 PM
kat73, Where do I find Dr. Mauro's recent slide presentation, pp 11-12, particularly?
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
Posted 20 November 2017 - 05:38 PM
Agh, I was afraid you'd ask that, and I had forgotten the magic way I had found it! So, I Googled it just now - I put in: what's on the horizon for chronic myeloid leukemia michael mauro september 2017. Then, after it came up, I scrolled down to "Program Materials" and clicked on "CML Program Slides.pdf". Let me know here if that works or not.
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.
Posted 20 November 2017 - 08:21 PM
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"
Posted 20 November 2017 - 09:50 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Posted 21 November 2017 - 10:48 AM
Scuba, thanks. Printed it out for my cardiologist, who I see twice a year to follow PAF (unrelated). Talk about Scylla and Charybdis!
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.
Posted 21 November 2017 - 06:12 PM
Posted 22 November 2017 - 06:21 AM
For those taking Tasigna ... consider vitamin K2 (menanquinone) as a way to help minimize calcification:
https://www.naturalp...cification.aspx
Another way to get vitamin K2 from your diet is to eat Japanese Natto (which I do most days now). It is an acquired taste like Scotch. Once you get used to it, you can't be without it.
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"
Posted 27 November 2017 - 05:15 PM
Thanks Kat73---I found the CML Program Slides (great directions). Scuba thanks for the links. I will finish reading those tomorrow.
I really appreciate the helpful information.
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
Posted 29 November 2017 - 05:12 PM
If we can't acquire the taste for the Japanese Natto, does a scotch chaser help?For those taking Tasigna ... consider vitamin K2 (menanquinone) as a way to help minimize calcification:
https://www.naturalp...cification.aspx
Another way to get vitamin K2 from your diet is to eat Japanese Natto (which I do most days now). It is an acquired taste like Scotch. Once you get used to it, you can't be without it.
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