67 replies to this topic

[CallMeLucky]

I wouldn't ring the alarm bells about this just yet, it looks like this was one study and a key sentence "The study by Canadian and French scientists was done in mice. Human studies are likely to follow, because the researchers need details of how people are affected." means the true understanding of this is still out.  How many times have we heard of a treatment that appears effective in mice but then doesn't work out in humans?.  Still it is something we should be aware of and talking to our doctors about.  Anyone on sustained "chemo" treatment should probably have a checkup with a Cardiologist on an annual basis just to see how things are holding up.  My guess is if this is true there is a good chance they could find this applies to other TKI drugs as well.  All speculation at this point, but still something to keep an eye on.

http://www.ottawacit...8934/story.html

OTTAWA — Patients who take one form of long-term chemotherapy pill should have regular heart monitoring in case the drug causes side effects, a University of Ottawa study recommends.

The drug imatinib "is toxic to the heart and causes overt damage to older hearts," says a team led by Mona Nemer, a geneticist and vice-president of research at the University of Ottawa.

Her team is not recommending that doctors stop using the drug. But she said patients may need treatment to avoid heart trouble.

Imatinib is widely known by the brand name Gleevec. Approved in 2001, it was the first drug to "switch off" cancer cells while keeping healthy cells intact.

Patients may feel stressed or may not sleep well and not realize there's a heart problem, Nemer said. "But these could be actually some signs of cardiac stress and dysfunction and they should consult their physicians."

"It's actually very effective against cancer. So the idea is not to stop treating patients with this. It's to make sure there is cardiac monitoring that is taking place," she said.

"In the case of this particular drug, it's a lifelong treatment. ... The problems on the heart happens slowly, so it may take some time before it manifests."

Imatinib was first used only for chronic myelogenous leukemia, but has expanded to use in prostate, lung and gastrointestinal cancers.

Ironically it was the success of imatinib that led to understanding of its problems, Nemer said. That's because the heart trouble only shows up in people who survive cancer in the long term.

"We don't want to cure the cancer and then have them die of heart attacks."

The study by Canadian and French scientists was done in mice. Human studies are likely to follow, because the researchers need details of how people are affected.

"It's unclear" whether a person who has heart trouble can safely stop taking the drug, she said.

Nemer's group learned that imatinib interferes with a protein that the heart needs to keep its muscle cells alive. If these muscle cells die it can lead eventually to heart failure.

The effects are greatest in older patients.

A release from the university says that "chemotherapy-induced heart failure is increasingly being recognized as a major clinical challenge."

The Ottawa Hospital has had a special program in cardiac oncology since 2008 specifically to deal with the effects of chemotherapy on patients' hearts.

The study has been published in the European Journal of Heart Failure and funded by the Canadian Institutes of Health Research.

tspears@ottawacitizen.com

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[IGotCML]

Interesting article.  Thanks for posting.

"We don't want to cure the cancer and then have them die of heart attacks."  I'll guess that "cure" was an unintentional misstatement and not actual the understanding of a VP of research at a university.  Hopefully, this research can help with quality of life issues for users of imatinib.

Personally, I would rather take a heart attack or another health issuing arising later in life than to die from CML in a few years.  I have a lot of concerns with the long term impacts of Tasigna, especially as it is a very new drug, but as someone with CML, I have limited options for fighting this disease.

[Tedsey]

Much of heart disease is reversible today..  CML is not.  However, I try to stay away from weighing which health issue is better to have than another, (but I do torture myself from time to time). 

As for, "Patients may feel stressed or may not sleep well and not realize there's  a heart problem, Nemer said. "But these could be actually some signs of  cardiac stress and dysfunction and they should consult their  physicians."  I am doomed.  Maybe I always was. 

Anyway, I have never been without stress.  And it has increased 1000 fold since getting this crappy disease.  If I don't die from CML and its issues, or a stress-related heart attack, it will be a miracle.

As I have swung back to detectable after 6 months PCRU on 100mg Sprycel (this last PCR), I am very cynical these days.  I am eating whatever I want.  I don't care if I exercise, etc. etc.  I think life is mostly the hand you are dealt (since we are going at it blindly).  I see how my 97 and 98 year old grandparents in the best of health did everything you could possibly do wrong, wrong.  It is a crap shoot until the "experts" can use your genome to see what likely lies ahead and what you should avoid to live a long life.

Whatever!

Thanks for posting anyway Lucky.

[CallMeLucky]

I did not know you were detectable again, I'm sorry to hear that I know how upsetting that is.  I assume you are still MMR?  I just worked my way up to 100 mg to see if I can get undetectable again.  I have doubts I will or if I do that I will hold it.  Sometimes I think maybe. The PCR tests are just getting more sensitive.  I actually had that conversation with my dr.  He said the lab we are using is very sensitive.  I said I would prefer ignorant bliss.

Hope you are taking it all ins stride.....

[simone4]

Tedsey, I lost PCRU last April with an increase of over 1 log.  Onc seemed faintly concerned,

but I took the "rope or the razor" attitude,of course.  I had the PCR  3 months after that, in July,

and was PCRU and the same in Sept.  I will have another on the "Ides of March" and

we will see what happens.  The "whatever" attitude is best and that is my new approach.

Eating anything I want and exercising when I feel like it and a general  f... it all works for

me.  So don't let a few zeros ruin your life.  O.K.?

Take care.

Simone

[Marnie]

I'm of the same mind frame.  I eat what I want and I drink a bit too much.  I've been extremely healthy all my life, and I still got CML.  My numbers have bounced around a bit, but lately they've been mostly pretty good.  Since we don't know how long we'll be around (hopefully a good long time), I'm into enjoying myself.  If that means a few too many glasses of wine, and foods that aren't so healthy, so be it.  My biggest issue is that I SO want to be retired.  The job, frankly, sucks.  Yet it's a job that I have to devote far too much of my time to, because I don't want to end my career being a crappy teacher.  I just don't want to work any more.  I want to spend my time enjoying life. 

[hannibellemo]

I couldn't agree with everything Simone, Marnie and Teds have said more! My onc has said the same thing, these tests are becoming more sensative. It may not be that anything has changed for us except the tests are getting "better".

There are no guarantees, except none of us will get out of this life alive! So, we might as well enjoy life as much as we can while we can! If I could only figure out how to do that and not require insurance - which requires working...

I'm with you, Marnie, retirement can't come quickly enough!

Pat

[TeddyB]

Mmmm, wine, with you there Marnie. Cheers!

I try to eat healthy during weekdays, and i eat what i want during the weekend.

Of course i dont always eat healthy during the weekdays either, but i try.

Unfortunately i have a love for potato chips, and they sometimes crawl out the cupboard on the weekdays, and they taste excellent with wine

[Marnie]

I'm with you, Teddy!  Growing up, my mother did not allow junk food in our house.  As an adult, I LOVE salty chips.  Potato chips.. .mmmmmmm.  Luckily, I seem to have inherited a fast metabolism and my many years of long distance running have kept the potato chips from showing on my hips.

I"m on my second glass of wine right now. . .unfortunately no potato chips in the cupboards. 

[Trey]

Here is a more complete explanation of the potential issues related to Gleevec (imatinib) and the heart:

http://www.ncbi.nlm....pubmed/24504921

The mice used in the studies were deficient in GATA4, which is tied to heart health in certain ways.  Then they were given Gleevec and they had increased heart disease.  This approach set up an in-bred deficiency in the mice and then gave them Gleevec to prove a point, and although it can be a valid approach, it may also not be valid.  The theory is that TKI drugs might interfere with or inhibit GATA4.  This has not been previously reported, so more work would be needed to show how much TKI inhibits GATA4. 

There are other possibilities, such as TKI interference with mineral usage in the body which could affect heart cell health.  Personally, I would see the issue as better mineral intake to ensure long term heart health.  Calcium, magnesium, and phosphorous would be key minerals.  Potato chips are not a primary source, but cheese is is excellent way to get highly absorbable minerals.

[Antilogical]

That's why I relax with wine-n-cheese every night.  Ahem.  The wine is just to remind me to have the cheese.  Really.

[Marnie]

Good thing I checked out the site.  I've got a glass of wine in my hand, but I forgot the cheese.  I think I'll just head back to the kitchen. . .

[Trey]

Or you could just look under the cushions for some wayward Cheetos....  10 day rule applies.

[Tedsey]

Slip me some ignorant bliss, man!  Lay it on me!  Some of us (well, me), just cannot handle the truth (but that's all I want to know).  Ahhhhhh!  Trying to take the increase in stride.  I went from <0.001 to <0.005 (the test says its limit is <0.001).  So, I am still MMR.  And I was only CMR for the 6 months. 

The rise appears to be just under 1/2 a log.  But it still is unnerving.  I am already on 100mg dasatinib, (what is considered one of the strongest TKI drugs).  Where will I go next?  I had life-threatening side effects on imatinib.  Nilotinib may be too similar to imatinib for me--worry, worry, worry...  I already got my 3 year progression free survival. see http://community.lls...169760#169760  Ironically, according to the article, I fell into the norm of what was considered a "fast" responder.  And like you have always said, to ease both of our anxieties (whatever, right?), CCyR and MMR remain statistically similar for the bar study authors set for progression free survival (ex. 2 years, 3 years, etc. post dx)--just to clarify.  But once your numbers get down low, new fears arise.  No one wants to lose response.   

It appears many who write on this board must be on the very upper end of the spectrum of drug response.  Well, I'll just have to wait until Spring to see if there is an upward trend.  As we know, it is the waiting that hurts the most.  If anything else rare and unexpected were to happen to me, I think I would just up and die from the overwhelming disappointment of it all.  Life is hard enough without all the extras.  I still try and have tired to do everything right, but as we all know, that info is for other people who won't suffer from rare diseases, not for us.  We have our own set of rules----and no one knows them.  Can we just all be lucky, take our pill and forget about it? 

Let us know if and when you reach zero again.  You have always responded so well.  I expect good results!  Sending it out to the universe.

Tedsey

[Marnie]

I looked.  No Cheetos. 

Darn.

[Tedsey]

Did someone say Cheetos?  How did we figure out how to do that to our food, especially the puffy ones?!?!?!  I bet they eat them in heaven.  They are the food of the Gods.

[Tedsey]

Dearest Simone,

I remember when you went through that.  I was very worried too.  I am so happy things are  going so well.  I am also glad you have an onc who knew enough not to induce panic in you.  That helps so much.  It so helps to hear success stories like yours from the source.  It gives me such hope.  I always fear the worst.  I am trying to change.  I think there comes a time when I will be convinced that it is OK to give up control (the truth is, was I ever "in control"?).  I am coming to believe that I have always been "just along for the ride".  And whatever car I got is what I get.  I have little influence on how well built it is or the kinds roads it travels and may have very little control over which route it takes.  In the grand scheme of things, my life may never have played out any differently despite where I have been.  I guess I am just disappointed that there is engine trouble when the probability was so small.  And there is no cure.  But luckily, a patch seems to hold things in place (for however long it lasts).  That is the best that I can do and can be done for me at this time (without as serious danger to my life and health like a SCT).  Although it is very hard, I need to embrace that.  There probably is a difference between conceding and defeat.  But I am not there yet.  Maybe within is where peace truly lies.

You can tell how American I am that I used a "car" analogy.  LOL  But we are all familiar with them.

All the best,

Tedsey

[hannibellemo]

Cheetos, yum-m-m-m!

Pat

[simone4]

Tedsey, I am very familiar with cars.  I love Formula One racing which I hope  will catch

on here soon.  I like your analogy, and it fits our CML journey.

You must be made of tough stuff, like Pat and all the others who have

endured such a horrible winter.  I saw a pink cherry tree in bloom today

and my heart almost stopped.  I didn't think I would ever see that lovely

color again.  (That's what winter does to me!).

Fondly,

Simone

[Marnie]

I've always been embarrassed to admit that I like Cheetos.  Now I feel so much better about myself!  Or, maybe I should feel embarrassed for all of you. . .