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Older Patients With CML at Higher Risk for Mortality, Vascular Events


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#21 gerry

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Posted 03 November 2016 - 05:09 PM

Good luck Buzz.I had issues with my legs about two years ago, turned out to be the beta blocker one of my specialists put me on. Symptoms stopped when I came off it. Hope your answer is as easy.

#22 Buzzm1

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Posted 04 November 2016 - 01:32 AM

Good luck Buzz.I had issues with my legs about two years ago, turned out to be the beta blocker one of my specialists put me on. Symptoms stopped when I came off it. Hope your answer is as easy.

Thanks Gerry; I'm not on a beta-blocker but I am now on 50mg (was previously 25mg) of Metoprolol and 100mg of Losartan for blood pressure.  I am worried that my leg problems won't have a quick fix.

 

Hoping to also see improvement in a few other areas ... my creatinine was 1.38 and GFR 50 as of my 10-17-2016 blood test

 

Increased Serum Creatinine Reversible Upon Imatinib Discontinuation http://bit.ly/22HDLBT

 

For the study, researchers retrospectively analyzed data from imatinib-treatment patients. The glomerular filtration rate, urinary clearance, and tubular secretion of creatinine of patients were compared with those of matched controls. Researchers also evaluated variations of serum creatinine before and during imatinib discontinuation and after imatinib resumption in patients enrolled in imatinib discontinuation studies.

 
In terms of reversibility, researchers observed a median decrease of nearly 18% in serum creatinine after imatinib cessation in 15 patients from imatinib discontinuation studies. The study demonstrated that when treatment was resumed in 6 patients, there was a median increase in serum creatinine of almost 19%.
 
My fasting glucose was 137 as of my 10-17-2016 blood test.  That reading may have been pushed up a little by the two cups of half decaf/half regular coffee I had (I didn't realize caffeine could increase blood sugar).

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#23 gerry

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Posted 04 November 2016 - 02:46 AM

Do they think it is vascular or are they working their way through things?

#24 Buzzm1

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Posted 04 November 2016 - 01:13 PM

Do they think it is vascular or are they working their way through things?

It's definitely vascular Gerry.  Just had a very extensive and interesting series of blood pressure readings up and down my legs, replete with sound.  The report will be forwarded to my doctor and I should hear from her within a few days.


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#25 Billie Murawski

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Posted 04 November 2016 - 11:22 PM

Hi Buzz, I have had vascular problems since I was 44, My left carotid was 99% blocked  My problem is hereditary, but now my left carotid is blocked again and inoperable. It's been about 4 years and I take aspirin,plavix, and lipitor. I get checked yearly by my cardiologist and the meds are working. I try not to think about it I personally feel that anyone on a tki should be checked yearly by a cardiologist.    Billie



#26 Buzzm1

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Posted 04 November 2016 - 11:41 PM

Hi Buzz, I have had vascular problems since I was 44, My left carotid was 99% blocked  My problem is hereditary, but now my left carotid is blocked again and inoperable. It's been about 4 years and I take aspirin,plavix, and lipitor. I get checked yearly by my cardiologist and the meds are working. I try not to think about it I personally feel that anyone on a tki should be checked yearly by a cardiologist.    Billie

Thanks for that info Billie.  I agree with you that TKI patients should be periodically checked by a cardiologist.  The problem I am experiencing snuck up on me; all of a sudden there it was.  The right testing may have given me some forewarning; according to the technician who tested me today, the earlier this kind of problem is treated, the better the odds of success.


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#27 Billie Murawski

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Posted 05 November 2016 - 12:42 AM

Thanks for that info Billie.  I agree with you that TKI patients should be periodically checked by a cardiologist.  The problem I am experiencing snuck up on me; all of a sudden there it was.  The right testing may have given me some forewarning; according to the technician who tested me today, the earlier this kind of problem is treated, the better the odds of success.

Dear Buzz, that blockage I had in 93 was a shocker to everyone, because of my age. The way I'm being treated is working great. Have you ever had a tia? (mini stroke) I was getting a white film over my left eye for 5 months, it was just a nuisance. Sometimes I have to get ultrasound on my legs-especially after traveling. I had to have my left carotid roto-rooted, now it's all plugged up, Try not to panic it's amazing how they can reroute our blood supply all over out bodies



#28 Buzzm1

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Posted 05 November 2016 - 08:55 AM

Dear Buzz, that blockage I had in 93 was a shocker to everyone, because of my age. The way I'm being treated is working great. Have you ever had a tia? (mini stroke) I was getting a white film over my left eye for 5 months, it was just a nuisance. Sometimes I have to get ultrasound on my legs-especially after traveling. I had to have my left carotid roto-rooted, now it's all plugged up, Try not to panic it's amazing how they can reroute our blood supply all over out bodies

Billie, in regard to a mini stroke, not that I am aware of.  I was wondering if ultrasound might help to stimulate circulation.  My first indication of circulation problems in my legs was shin-splints in my right leg after walking a short distance.


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#29 Billie Murawski

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Posted 05 November 2016 - 07:52 PM

Billie, in regard to a mini stroke, not that I am aware of.  I was wondering if ultrasound might help to stimulate circulation.  My first indication of circulation problems in my legs was shin-splints in my right leg after walking a short distance.

 I can't help you with that one Buzz, but if you ever get anything out of the ordinary on just one side of your body get it checked out right away. Oh hell Buzz go to a cardiologist anyway. All these side-effects that are turning up after long term use of a tki are scary. It's worth it just for the peace of mind. Good Luck Billie



#30 Buzzm1

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Posted 08 November 2016 - 02:42 PM

The test I had revealed what my doctor termed a fairly severe blockage in my right leg.  I have an appointment to be examined by a vascular surgeon and have been assured that surgery is only done as a last resort after all other efforts have failed.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#31 kat73

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Posted 08 November 2016 - 03:09 PM

Good luck, Buzz.  Is this a blood clot?  And they will give you blood thinners to dissolve it, do you think?  Is this the same thing as phlebitis?  My father had that twice and came through just fine, albeit he was in a LOT of pain until it resolved.  I'm glad you are getting answers!


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.


#32 Buzzm1

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Posted 08 November 2016 - 03:16 PM

Good luck, Buzz.  Is this a blood clot?  And they will give you blood thinners to dissolve it, do you think?  Is this the same thing as phlebitis?  My father had that twice and came through just fine, albeit he was in a LOT of pain until it resolved.  I'm glad you are getting answers!

Thanks Kat; I'll find out when the vascular surgeon reviews the test findings with me next Monday.  Resolving the issue without invasive surgery would be a real blessing.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#33 Buzzm1

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Posted 15 November 2016 - 08:55 PM

Saw my vascular doctor today.  The blood flow in my normal left leg, from the calf on down, is almost twice what it is in the right leg.  

 

RIGHT            PRESSURE      INDEX

Brachial          187 mm Hg

Calf                99 mm Hg     0.52
Ankle PTA       93 mm Hg     0.49
Ankle DPA       92 mm Hg     0.48
Great Toe       52 mm Hg     0.27
 
LEFT              PRESSURE      INDEX
Brachial          190 mm Hg
Ankle PTA       168 mm Hg     0.88
Ankle DPA       179 mm Hg     0.94
Great Toe       78 mm Hg     0.41

 

I'll be put on a cholesterol medication. such as lipitor/generic is atorvastatin, to help reduce plague build-up.

I'll be trying to walk 35 to 45 minutes daily to see if I can improve the situation.  I'll be tested again in six months.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#34 gerry

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Posted 16 November 2016 - 06:09 AM

About the only thing I miss about the Gleevec was I didn't need BP or cholesterol meds.

#35 kat73

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Posted 16 November 2016 - 11:09 AM

Buzz - Glad you've got some answers and there's something to be done.  Maybe you'll get to use the new improved stuff I read about in today's papers that might be replacing the statins someday.  I empathize over this "one more thing" you have to contend with.  Here's hoping you get good results!


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.


#36 Melanie

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Posted 16 November 2016 - 03:16 PM

Buzz, sorry you're having to take yet another drug. Hopefully, after a while of the steady walking regimen, that will be all you need. My husband and I try to walk every day and it has been a cure for a lot of ailments that use to bother us. His high BP, and back pain have completely gone away and both of our circulation issues have improved. Hope it helps you!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)




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