See this abstract - ASCO 2016
See also:
ASCO 2016 - Chicago - Chronic Myeloid Leukemia
Posted 26 May 2016 - 10:06 AM
Posted 26 May 2016 - 03:12 PM
Posted 26 May 2016 - 10:14 PM
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 PCR result pending... 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
Posted 28 May 2016 - 01:58 PM
I battled high glucose levels and A1C of 6.9 on Nilotinib for 3 yrs. and a Dr. that kept blaming me for the high levels. " if you would eat right, exercise and loose weight you wouldn't have a problem". I would walk out crying because I was trying so hard. I did not want another disease especially diabetes and I would do anything I could to avoid it. As soon as I switched to Bosutinib, A1C went down to 5.6. For about 6 mo after stopping the Nilotinib I had to watch out for extreme low blood sugar drops and have something like honey available to jump start my glucose level. It finally leveled out and now I don't have to worry about it.
Posted 29 May 2016 - 12:30 PM
Although, I work out , I am thin, ate the recommended healthy diet, and am on the youngish-side (under 50--LOL). In the last few years, my blood sugar has been rising. Not one of my healthcare professionals mentioned anything to me, but I am concerned. Preventative medicine is often an oxymoron. I don't want to just wait around to take another pill when the disease fully presents itself. Maybe I can do something about it. See Sami Inkinens's story http://www.warondiab...es-exercise-29/
My higher blood sugar could or could not be due to the Sprycel. And it may be impossible to figure that out. It appears T2D is on the rise with everyone. Therefore, if you are on a second generation TKI, and have high blood glucose, you are not much different than the population who is not.
At the moment, I no longer eat sugar of any kind and eat a very low carb, no grain diet (more or less a ketogenic diet). This is known to help lower blood sugar levels, and ironically, because if is a higher-fat diet, it improves cholesterol levels (more LDL particle size instead of total cholesterol levels). This diet is also supposed to improve inflammation. I will go in to get a blood panel done at my GP in July. I will report back if anyone is interested. It may be a flop, but I tried veganism, which I enjoyed, but did not see a decrease in my glucose or cholesterol (I have had high cholesterol since childhood when it was first tested).
It is very sad that healthcare professionals and the media blame patients for their chronic illnesses. It is such a crock It is unkind, lacks empathy, and totally unhelpful. "Just a reminder, it's a Diabetes Myth that you gave yourself Diabetes. In fact, it's probably the biggest myth that continues to be believed by folks." see link above.
I think we need to take a long, hard look at our diets. And not all of us can eat the same diet with the same results (I think this is likely due genetic variation). The last time I checked, it takes blood sweat and tears to really and truly eat healthy in the US (so if any processed, boxed or packaged food claims to be healthy, the vast majority of claims are lies). It takes time and commitment to eat healthy. Sugar is in everything. Sugar carbs (including fruit) help to create a fatty liver and an exhausted pancreas. Both of these lead to diabetes and heart disease.
We can at least try to cure or improve this with our diet. Lowering carbs, which turn into sugar, may be a good place to start.
Wishing you all the best of health,
Teds
Posted 31 May 2016 - 08:33 AM
I enjoyed your post - Teds ...
Eating real food is actually quite easy. All one has to do is visit the produce part of the grocery store and the "newly dead section" (meat, fish). That's it. No cans, bags, or boxes. You avoid 90% of the store! The only exception would be "herbs", like Turmeric, onion powder, ginger, etc. (which come in glass.
The more you eat raw or steamed the better.
One sure way to reduce fasting glucose levels is 'high intensity exercise' (aka HIIT). Going all out until you run out of breath over short duration (multiple sets) will do more to clear out excess glucose than any other exercise. And it doesn't take long (10 minutes a day). I still go on longer jogs (3 miles), but mostly for the run itself. Along the run I will sprint three or more times. My triglycerides plummeted to very low levels now. Of course, I still take Curcumin.
(one exception in my case is wine. Wine can have sugar if it is the non-dry red variety. Stick with very good high quality dry cabs ... and only a glass or two).
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"
0 members, 1 guests, 0 anonymous users