Advanced Member
Posted 08 December 2014 - 08:20 PM
Hi everyone.
I noticed that Trey is taking 200 mg . of Gleevec instead of 400mg. What were the reasons for the lowering of the doseage? My daughter has had serious eyebleeds and Dr. Druker wants to see if her body is slowly metabolizing the Gleevec causing the painful and serious looking eybleeds. Has anyone else had their doseage lowered?
Sandy
Advanced Member
Posted 22 December 2014 - 01:25 AM
Hi Sandy,
I went down to 300mg following a year of PCRU.
Advanced Member
Posted 22 December 2014 - 02:10 AM
Hi Sandy,
Have been on Gleevec 400mg for almost 5 years; longterm PCRU. Two weeks ago I reduced the dosage to 300mg. My next BCR/ABL will be in the 3rd week of January; will post the results.
Buzz
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 24 December 2014 - 01:39 PM
Hi Gerry and Buzz.
What made your oncologist lower the Gleevec doseage to 300 from 400mg? My daughter remains on 400mg. but will be doing a blood test to determine how her body is metabolizing the Gleevec. This test is being done due to the above the norm eyebleeds that last long and are painful. She was told to stop the Gleevec until the eyes cleared. She is back on it and will be scheduled to take the test after a certain period of time. The results may lead to a lowering of the doseage which her oncologist isn't in favor of doing, but Dr. Druker feels that based on the results , her doseage can be reduced.
Sandy
Advanced Member
Posted 24 December 2014 - 02:01 PM
A number of patients have done very well on 300mg Gleevec and even 200mg. It is not recommended for newly diagnosed patients, but for longer term "maintenance therapy" some Oncs have recommended 200mg after PCRU. The trend in doing this has been slow to catch on, but is slowly gaining acceptance. I have been on 200mg Gleevec for about 5 years now and continuously PCRU.
Here is a study about dosage effectiveness showing how dosages down to 200mg can be therapeutic for some patients:
http://onlinelibrary...010.01643.x/pdf
Edited by Trey, 24 December 2014 - 02:02 PM.
Advanced Member
Posted 24 December 2014 - 02:13 PM
Hi Sandy,
It was my decision to lower my Gleevec dosage to 300mg. My decision was based on Trey's reduced dosage after extended PCRU, along with the knowledge that I have gained from monitoring this forum and reading the various stop studies referenced. My body doesn't "appreciate" oral chemo, and even though it's the lesser of my major problems, I'm wanting to do whatever I can "to feel just a little bit better" and perhaps reclaim a little more energy, in the process, for the task at hand.
Buzz
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 24 December 2014 - 06:58 PM
Sandy, I was having eye bleeds also, and I found a solution that worked for me and I hope it can help your daughter. It involves putting some "iced tea" in your eyes which doesn't seem to damage them. I have a procedure I do every morning to reduce redness in eyes.
I found this when I googled puffy eyes. But the squeezing the tea bag into eyes so that a some liquid drops into the eyes was my own addition...
I take two black tea bags put them in a cup run under the hottest tap water until water is dark. Put them in the freezer for about 10 minutes, it's ok if they are frozen because the coldness is going to help reduce edema.
When very cold I squeeze teabags over each respective eye so that a few drops go into eyes, blink to get extra out. Then put your head back and set the teabag on each eye for about fifteen minutes.
I don't do it every day but at least every other, and I no longer have eye bleeds.
Hope it gets better for your daughter, most side effects are gone after six to nine months.
Advanced Member
Posted 23 January 2015 - 09:35 PM
My daughter had the test that determines how much Gleevec is in her body. This was done to see if she could lower the doseage of
Gleevec due to the frequent, painful, and long lasting eyebleeds. Unfortunately, the results do not merit the reduction of the Gleevec. There is no buildup of it in her system. Therefore, she will remain on 400mg.
Sandy
Advanced Member
Posted 23 January 2015 - 10:09 PM
Sandy .. sorry to hear that
I began the lower dosage Gleevec 300mg on 12/07 ... awaiting the results of a 01/19 (6 wks) test
longterm (4 yrs) PCRU was the determination ... hopefully more/some energy
mainly trying to stop the downhill slide
Buzz
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 26 January 2015 - 07:24 PM
Hi Buzz.
Let is know what the results of the blood test are. Are you feeling any more energetic on the lower doseage?
Sandy
Advanced Member
Posted 26 January 2015 - 11:01 PM
Hi Sandy,
I'm patiently waiting to hear from my doctor; anxious to see the results.
Far too early to celebrate but I just showered and washed my hair,
all while standing, and even then, this is the first time in a long time that
I didn't feel exhausted, to the point of collapse, when I got out of the shower
.. so that's a very positive sign.
Maybe it had something to do with the half gallon of GaviLyte-C I drank earlier,
in preparation for tomorrow's scheduled 5-year colonoscopy ... I do feel lighter
I can hardly wait to drink the other half gallon in the a.m.. ... lol
wasn't able to take the Gleevec today because of the "no food rule"
Buzz
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 26 January 2015 - 11:55 PM
Hi Sandy,
I'm patiently waiting to hear from my doctor; anxious to see the results.
Far too early to celebrate but I just showered and washed my hair,
all while standing, and even then, this is the first time in a long time that
I didn't feel exhausted, to the point of collapse, when I got out of the shower
.. so that's a very positive sign.
Maybe it had something to do with the half gallon of GaviLyte-C I drank earlier,
in preparation for tomorrow's scheduled 5-year colonoscopy ... I do feel lighter
I can hardly wait to drink the other half gallon in the a.m.. ... lol
wasn't able to take the Gleevec today because of the "no food rule"
Buzz
Oh Buzz, You have my deepest sympathy I've had 3 and everytime I say never again this time I mean it. The test is nothing but that prep, you would think that in this day and age they would have a better method of prepping. When I was on Gleevac I was still going when they wheeled me into surgery. It was their problem then, I warned them!!! good luck Billie
Advanced Member
Posted 29 January 2015 - 12:53 PM
I've had serious eye bleeds for the entire 12 years I've been on Gleevec, 400 mg. My hemo/onc says he thinks it's unwise to mess with lowering the dosage since I'm doing well. I have agreed.
FYI: I've kept a record of when my eye bleeds occur. They seem to follow times when I've been on the computer too much, haven't had enough sleep, or, especially, when I have been crying. Eye drops and p.m. eye ointments help a great deal. So do cold compresses. The blood and pain disappear quickly. For me, eye bleeds and other side effects (now either minimal after so many years or I've learned to ignore them) seem a small price for the remission I continue to have. Hope this helps.
Advanced Member
Posted 30 January 2015 - 12:30 PM
Hi Buzz.
Let is know what the results of the blood test are.
Sandy
Hi Sandy,
Good news .. I've maintained PCRU after 6 weeks on the 300mg Gleevec dosage
looking forward to my April blood test.
Buzz
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 31 January 2015 - 07:38 PM
Sorry Sandy,
Didn't see your question earlier -
I had a great response to Gleevec and achieved PCRU around 17 months (hard to really tell accurately as my testing was six monthly), during the first year of PCRU I was talking with my doctor about dropping dosage. He wasn't keen on this when I first started seeing him, but came around to the idea and agreed that I could lower it after a year of PCRU.
I have since stopped taking the Gleevec (with doctor's approval) and have been off now for 14 months, last test 9th January was still PCRU.
Muscle issues for me were the major impact and they seemed to be increasing as time went on, this plus how well Trey and another friend of mine responded to lower dosage pushed me to lower dosage.
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