21 replies to this topic

[elvis]

Just wanted to share my story.

 

Dx'ed 2009 July.

 

Gleevec - 2009 - 2010 middle

Tasigna 800 mg - 2010 - 2014 March

Sprycel  - 2014 March - Current

 

 

Over this period by my Systolic pressure between my two arms were different by about 20 points.  I was asked to do a comprehensive Cardio analysis by my oncologist.

 

They did a Carotid scan and found my Carotid blocked about 20% atherosclerosis.  Also some percent blockage is found in the artery branching into right hand that could explain the change in blood pressure.   I am a non-smoker, social drinker (very rarely), vegetarian and exercise at 3-4 times a week.  

 

My doctor thinks TKI's over period especially Tasigna has been implicated to cause this.  There is obviously no proof but it is now added to the warning label so long term usage do result in progressive atherosclerosis and hence require constant monitoring and correctional treatment in certain cases.

 

Now I am being put on baby aspirin and possibly statins based on my lipid profile tests.

 

Wanted to share this so other can benefit from my experience.  If you are using Tasigna for many years, you may want to consider asking your oncologist about further tests depending on your situation.

 

Any thoughts or feedback please share with me.

[Buzzm1]

Thanks for sharing elvis.

 

With the possible exception of Gleevec (2001), the longer-term side-effects of TKIs are mostly an unknown.

 

The newer TKIs are far more toxic (to our organs) than Gleevec, and have higher efficacy ratings, which possibly adds to an argument for reducing the dosage/attempting cessation as soon as possible.

 

We will all benefit by knowing as much as possible about the possible long-term effects of TKIs, including the side-effects that don't go away.

 

Buzz

 

PS .. I have wondered how much prolonged PCRU, while continuing to take the initial recommended high TKI dosage, adds to the odds of successful cessation, and/or duration of cessation, even without consideration of prolonged side-effects.

[tiredblood]

Just wanted to share my story.

 

Dx'ed 2009 July.

 

Gleevec - 2009 - 2010 middle

Tasigna 800 mg - 2010 - 2014 March

Sprycel  - 2014 March - Current

 

 

Over this period by my Systolic pressure between my two arms were different by about 20 points.  I was asked to do a comprehensive Cardio analysis by my oncologist.

 

They did a Carotid scan and found my Carotid blocked about 20% atherosclerosis.  Also some percent blockage is found in the artery branching into right hand that could explain the change in blood pressure.   I am a non-smoker, social drinker (very rarely), vegetarian and exercise at 3-4 times a week.  

 

My doctor thinks TKI's over period especially Tasigna has been implicated to cause this.  There is obviously no proof but it is now added to the warning label so long term usage do result in progressive atherosclerosis and hence require constant monitoring and correctional treatment in certain cases.

 

Now I am being put on baby aspirin and possibly statins based on my lipid profile tests.

 

Wanted to share this so other can benefit from my experience.  If you are using Tasigna for many years, you may want to consider asking your oncologist about further tests depending on your situation.

 

Any thoughts or feedback please share with me.

When I stopped taking Tasigna, my doctor mentioned "we're finding it has CV side effects," but neither of us went into any detail about it.  Maybe this is what he was talking about.  I'll ask at my next visit.

[Dom]

My onc put me on Gleevec specifically because of the CV side effects of the other tki's. I have heart problems -- 5 stents now, and very difficult to control BP. Gleevec is the one tki that has no - or minimal -- CV side effects. Or so my onc led me to believe.

[elvis]

Well, what surprises me that there is no protocol to screen constantly for such anomalies given many documented cases.

 

Why is it kept as a "dark secret" until some one develops it?  Why not pro-actively start treatment with Tasigna evaluating high-risk cases along the way, monitoring the progress.

 

Just a EKG on Tasigna will not do it. With the latest information several folks needs to be monitored for plaque build-up. It is definitely not a cost-issue. Compared to Tasigna costs a simple ultra-sound on carotid artery is a simple tests that can monitor progress of atherosclerosis.

I do not deny the value of TKI's.  But I feel cheated that this issue is not screened and incorporated into the protocol instead of making it discretionary on the part of every oncologist.

 

Some of this operates like wild-west right now.  If you have good and caring Onc it is one thing.  But it will be completely different story otherwise. You will be trail-blazing few things and lot of things happen without your consent or knowledge.

 

Some of the onc. completely deny your side-effects knowing some of them are uncomfortable to deal with.

[Buzzm1]

_{TASIGNA Side Effects by likelihood and severity.}

 

_{side effects tasigna}

[Dom]

Elvis, if you don't mind my asking, why are you being moved around between tki's? Are your numbers not coming down?

[elvis]

Gleevec the response was slow. So switched to Tasigna 800 mg after a year with Gleevec.  Reached MMR on Tasigna, but switched to Sprycel due to severe rash and inflammation of skin that lasted nearly 3.5 yrs.  When I changed oncologist he thought I do not have to go through these side effects and sprycel could be a better drug for me.  I never reached PCRU even with Sprycel. Continuing to hover in the same range of response plateauing near MMR levels.

 

My current onc said Tasigna is suspected to cause Cardio-vasuclar issue on long term use especially 3-5 years. He said they are seeing this more often in the practice. Hence he advised to me do further cardio checks based on my high systolic BP readings.

 

My previous onc. never checked anything more than EKG for QT intervals and he ignored my BP readings saying he treats only leukemia.  Based on my experience I think if you are complying and taking Tasigna  4-5 years on Tasigna it is better to perform deeper tests even if you are asymptomatic.  Some of the side effects are long term and do not show up overnight. 

 

I learnt it the hard way.

[Trey]

Tasigna is the TKI most associated with "arterial vascular occlusive events". 

 

http://www.ncbi.nlm....pubmed/23459450

[janne]

I recall Scuba reporting on significant decrease in carotid artery stenosis following supplementation of something he was taking. I think it is worth mentioning again...in the event that any of us find that we are having such problems, Scuba do you mind posting that again ?

[janne]

Also, in looking at Trey's posts now at 998, almost 1000 (probably not including his posts from the previous board) thank you for all your contributions to so many of us here on this board...you are much appreciated !  Happy-almost-1000 posts on this board !

 

And Scuba, I did look for your previous post, but could not find it.

[scuba]

 

I recall Scuba reporting on significant decrease in carotid artery stenosis following supplementation of something he was taking. I think it is worth mentioning again...in the event that any of us find that we are having such problems, Scuba do you mind posting that again ?

 

 

 

 

Vitamin D + vitamin K2 work together to scavenge Calcium out of soft tissues (like arteries) and re-deposit the excess in bone. People who have a diet rich in K2 (Japanese) have little osteoporosis or artery related heart disease. 

 

http://chriskresser....scular-disease/

 

I eat Japanese Natto (an acquired taste) most every day as a source of K2. I also take 90-180 mcg of vitamin K2 (jarrow's MK-7). Once I increased my vitamin D plus added K2, my artery scans showed decreasing arterial plaques. 

 

( Coincidentally - I just had a thyroid ultrasound (see previous post) to pinpoint why my thyroid is acting up (first time ever for this, and I suspect related to TKI withdrawal). The ultrasound showed my carotid artery ... and it was crystal clear! Nothing - no buildups whatsoever like three years ago when I started my artery regimen. The tech was impressed at my age and my artery was so "open".)

[IGotCML]

Elvis,

 

What were your systolic numbers that caused you concern?

 

I have been on Tasigna for almost 3 years and have noticed my systolic numbers have also increased. Prior to CML, I had my blood pressure checked twice a year and my systolic was always between 100 - 110. My systolic was above 130 when I was initially diagnosed (I was symptomatic), but 3 months on Tasigna got me to CCyR and I was back below 110.

 

Currently, I get my BP checked more often with my visits to the onc and once I hit 18 months on Tasigna I have not been able to get my systolic below 120 and I have had some systolic readings above 130 in the last year. Now it is an apples to oranges comparison as I have gained around 10-15 pounds extra weight in the last 2 years because my physical activity has been reduced significantly due to from the constant fatigue from taking the TKI. 

 

I am in my mid 40s, so I will guess that age is not yet a factor in my blood pressure readings.

 

The increased systolic readings is not from cholesterol as I have always limited cholesterol in my diet. At my last reading in February, the PA who reviewed my cholesterol readings was amazed that my LDL numbers were so low and she usually doesn't see LDL numbers that low unless someone is on medication.

[dlb65]

I have been on Tasigna for 2.5 years, reached MMR at 18 months, but I recently developed elevated cholesterol, lipids, blood pressure in addition to my on going elevated glucose. Due to both the anecdotal and published data

http://www.ncbi.nlm....pdf/0991197.pdf

both my Hematologists, who practice at major medical centers on the West coast, have recommended switching to Gleevec prompting my earlier posts on strategies for taking Gleevec. While it may be coincidence, Kareem Abdul-Jabbar, a spokesperson for Novartis who has been on Tasigna for several years, recently underwent a CABG  (Coronary Artery Bypass Procedure).

[elvis]

My systolic readings used to be around 130 and I take Toprol XL 25 mg (beta blocker) in the night.

 

Offlate with the same dosage my systolic started to push into 140-145 range and sometimes spike upto 150. Also I found it was asymmetric with a difference of 10-15 points. that prompted a ultrasound study which revealed Carotid blockage.

[kat73]

Wanted to get back to Buzzm1's question:  Are there any data on whether the length of time of durability of an undetectable state has any effect on durability of successful cessation of TKI treatment?  In other words, does continuing to treat at full dosage for, say, 8 years of PCRU give you an advantage if you try and quit over, for instance, just one or two years?

[Buzzm1]

kat73, yes, on average, the length of time a CML patient takes the recommended high dose of a given TKI, while remaining PCRU, does increase the probability of remaining PCRU after cessation ... but there aren't any guarantees, and the increase in the probability of remaining PCRU isn't that much greater.  Rephrasing the question: with respect to the toxicity of TKI's and the health risks, after reaching PCRU, is remaining on the recommended high dosage for a prolonged period of time worthwhile?

 

Here are quick summaries of some of the STOP studies: http://bit.ly/1XyGyL5 (not a lot of consistency)

[Buzzm1]

Between my annual physical last year and on Oct. 30 this year, I decreased my Gleevec dosage from 400mg to 150mg.  

My blood pressure spiked to 150+ ...

I am in disbelief but it could be a result of the Gleevec reduction; nothing else has changed

I take two BP meds: Metoprolol and Losartan

 

I need to find my BP cuff and begin taking readings 

 

I'm currently in health problems overload and am in the ignore mode.  

[kat73]

Thanks, Buzzm1, I had appreciated that summary you made when you posted it.  Sometimes I just get antsy and tired of being tired. 

 

You are wise to put yourself in ignore mode.  BP is notorious for being flukey.  I think I've probably posted this before, but my therapist once said something so goofily simple-minded and banal, and yet it stuck in my head and helped me feel better an absolutely absurd amount:  "Most of the time, things work out OK."  There ya are.  5 cents please.

[missjoy]

Thank you Buzzm1! You did a good job by putting the TKI secession trial data together. The summary is very helpful.