Advanced Member
Posted 27 June 2016 - 04:10 PM
Statistics were obviously part of my concern at the meeting, and he stated significantly better than 30% (i.e around 70-80% with a well matched donor). I hope this was correct... I just did a quick look and didn't have time to read much (I'm at work), but maybe something more positive is in here.
www.medscape.com/viewarticle/408451_8
Advanced Member
Posted 27 June 2016 - 04:19 PM
Like I said, 30% chance of NOT surviving. Same stats you have. Either way you look at it, not great given that your life is at stake. And dying is not the only problem. Loss of functions, GVHD (super side effects), secondary cancers, chance of not even being cured. Although they are intertwined, most of the folks we have lost here were lost from the transplant process itself, not from the leukemia.
Advanced Member
Posted 27 June 2016 - 05:39 PM
Like I said, 30% chance of NOT surviving. Same stats you have. Either way you look at it, not great given that your life is at stake. And dying is not the only problem. Loss of functions, GVHD (super side effects), secondary cancers, chance of not even being cured. Although they are intertwined, most of the folks we have lost here were lost from the transplant process itself, not from the leukemia.
Advanced Member
Posted 27 June 2016 - 08:36 PM
Advanced Member
Posted 27 June 2016 - 10:34 PM
My onc started pushing transplant also but I am 64 and the odds he suggested were not good. I am on Bousitinib now my 4th TKI and at first I had a very hard time with liver toxicity, weight loss and fatigue. So his next step was transplant I went for consult with Dr. Drucker. So glad I did he gave me 4 options if bousitinib didn't work or side effects get to me none of the 4 are transplant. So far doing ok now .000"% from .763 once I could tolerate it. So go see Dr. Deininger, I saw him in a clinical trial for Sprycel at OHSU he is great a lot like Drucker. Love those guys.
Advanced Member
Posted 28 June 2016 - 05:12 AM
There are some Bosulif peeps on the boards and they have had great success on it from what I've read, might want to search on some of those threads for more info.
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
Advanced Member
Posted 28 June 2016 - 03:11 PM
Folks, Johnny Mathis would NOT be proud! Read my ORIGINAL POST...what are the chances???
Advanced Member
Posted 28 June 2016 - 07:07 PM
Advanced Member
Posted 28 June 2016 - 09:22 PM
thatguy,
I was just looking at your testing schedule. You know, if you weren't being tested every two weeks your numbers wouldn't make you feel like such a turtle. Look at them in 3 month increments and all of a sudden they look pretty normal.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 28 June 2016 - 11:44 PM
Advanced Member
Posted 29 June 2016 - 05:09 AM
thatguy hijacked your thread. 
I think it depends on if you hit milestones (such as MMR) and how long you have been on the medication (resistance and mutation). I don't know specific numbers but pretty much everyone agrees that you can expect to live a near normal lifespan and the CML most likely won't kill you.
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
Advanced Member
Posted 30 June 2016 - 10:15 PM
That's great! Thanks buddy. So the Bosulif is working well now? What is your history?
Advanced Member
Posted 01 July 2016 - 12:39 AM
I figured out how to add my history at the bottom.
Thanks for adding your history Tucker1; you've been on quite a journey; Congrats on your undetectable; 400mg of Bosulif is a heavy dose. There are a few others here on Bosulif 300mg.
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 01 July 2016 - 08:24 AM
Advanced Member
Posted 01 July 2016 - 09:53 AM
I figured out how to add my history at the bottom.
Wow, so your testing was done years apart...very glad for your success. The cardiac risks are diminished with Bosulif compared to Tasigna right? Did the QT return to normal after departure?
Advanced Member
Posted 01 July 2016 - 10:44 AM
Yes I think it is high also and I don't have many days I feel good or much get up and go. My Onc agreed to discuss lowering my dose after 2 more PCRs not really his idea but he said we would talk.
Tucker1, with your history, and considering all things, I wouldn't wait very long before gradually beginning dosage reduction. With age we are more susceptible to the toxicity of TKIs.
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 01 July 2016 - 08:38 PM
Advanced Member
Posted 02 July 2016 - 12:27 AM
Tucker, from your history:
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
Do you remember the date you restarted Bosulif 100mg, and the dates, relative to your PCR tests, you increased the dosage to 200mg, 300mg, and then 400mg? Adding that information into your history might help give us a better understanding of your response relative to Bosulif dosage.
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
New Member
Posted 02 July 2016 - 08:01 AM
I am not one to give advice to others about your treatment so I believe this to be a first. If you are uneasy about your test results, get a mutation test done (if insurance allows these are expensive tests to have done). If you have a mutation make sure your doctor understands the best treatment (TKI drug) option. Went through all 5 TKI's (failed 4 of them), guess what I had done. Have a few problems, we all do, but haven't taken a TKI in 8 months and no evidence of the diesease.
Good luck.
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