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oletimer on gleevec 10 yrs. March 02, 2011 just had a small stroke in critical area of brain, been paralyzed in left side, but recovering with rehab, therapy, and mercy of God.
An echocardiogram was done among many other tests as enzymes were up and my heart appears to have lowered ejection fraction than previous normal scans at mda some 10 yrs. ago. Research shows in some people who start gleevec within 14 months, congestive heart condition is presented.
I am considering this as a long term side effect. Has anyone had this to occur after years on gleevec? It is very important to our cml community that this be reported . My pharmacy has reported this to Novartis. I still do not have use of my left hand or would give more details. I am soon to be 65 yrs, old, in remission of cml over 10 yrs. on gleevec


OLETIMER

Hi Oldtimer,

I emailed Dr. Talpaz with your question. Below is his answer.



Warmest wishes,
Jerry

David experienced some heart side effects from the beginning
Doctor diagnosed some Bradichardia

Thank you Jerry, Too early to tell if this is a long term side effect, and heart was not looked at in 10 yr. span. I realize had I stayed with MDA it would have most likely been checked. Will let you all know how my next echo comes out for confirmation. something caused a stroke. Thanks much Carmen for reply.

Oletimer,
i am so sorry you are dealing with this situation. Your post illustrates how important it is that we have good follow up on our general health. As you mention, at MDA you undoubtedly would have had better follow up on your heart. It behooves all of us to ask to be checked periodically, even if our doctors don't think of it.

I hope you recover full functionality quickly,

Leah

I do Realize Dr. Talpaz's report does not reveal a trend of heart disease, but we are just now into the 10 yr. Out timeframe for long term side effects. The cardiologist commented you can't take chemotherapy 10 yrs w/o heart damage. I have an appointment with oncologist next Thursday the 20th. I have many questions on just how long term side effects are monitored, if heart is being monitored, if all treatments for cml affect the heart at any point. But then I am an oletimer on gleevec 10 1/2 yrs. I am naturally interested in all factors concerning longterm side effects. perhaps heart scans should be done by oncologists as part of treatment, at various times . Any input is appreciated, ESP by other gleevec oletimers or others taking other treatments.

You don't mention your PCR levels but I assume, given that you have not changed drugs, that they are very low.

There is a growing cadre of patients, myself among them, who have been stable at very low (or undetectable) levels for 4 years or more, who are trying a longer term trial off all drugs.

Dr Druker has approved this for me, after suddenly developing severe side effects on Sprycel (after 5 years). His protocol is a PCR test every 6 weeks (for at least the first 6 months). If PCR remains stable, you continue off drug.
There are people who have gone as long as 2 years remaining stable.

Perhaps this would be an option for you. I agree, you can't be on these drugs long term without some system wide impact. We will not know what these drugs do after decades of use until we get there. I appreciate that we probably can't go on and off meds at will, but a 6 month break, or more (for those of us whose disease will allow it) every 5 years or so, sounds like a reasonable compromise to me.

Leah

Leah, thank you MUCH for reply.
My onc. Runs the pcr test every 6 months as it is not the million cell test and it comes back "neg".
He has asked me to come in next week, after I called him ,so hopefully he is doing his research and will be willing to discuss a plan to stop gleevec even if temp. There is much to consider and discuss.

I am so happy for the ones off 2 years and believe I would be one of those to stay off. And so happy for those getting a break.

It appears my gastrointestinal problems have increased in last 2 months and possibly the heart is at risk. I do intend to ask for a confirmation of the echo they did on my rush to hospital where multiple errors occurred. Do not want to risk another stroke. I want the echo done at another facility. I have had symptoms consistent with a heart problem I discovered after doing research.
Many thanks! Goodness what would we do without Jerry and others who operate these sites.
Oletimer(longtermer)

Hi Oletimer: I guess I am pretty close to you in how long I have been on Gleevec. It will be 11 years for me next week since I started Gleevec. I am going to be 64 in Nov. Last May I went for a complete cardiac work-up. The cardiologist was satisfied with my results. So sorry for all the problems from your stroke. I just spent the whole summer with my mother who had a stroke, and we had to put her in a nursing home for Rehab. Just brought her back to her house last week, and she is doing okay. She will be 86 soon. You sound like a tough person, and you will do okay also.
Susan A.

I am so happy for your good report on heart. And that your mom at her age to recover. You were wise to have your heart checked out. I am a Christian and my strength comes from Christ. I am really a wuss but with Him I can do all things. Congrats on your long term gleevec without complications. I am recovering with therapy.

Well, thought I was getting a consultation visit, waiting 6 Hours was a bummer. Onc. Had me do bloodwork and was treating my visit as a standard visit. He really did not want to discuss it. Had not gotten my echo from hospital. I told assist I had not taken gleevec for 4 days. He was not happy but did say since I had stopped it, we would wait for cardiologist to determine if my heart was compromised. If not then he expects me to return to gleevec.Suggested I go to mda but I told him not an option. If I do return to meds I will have to have something for my stomach. My next appointment is January.I am off gleevec and feeling so much better. I will be having the echo done in cardio. Office and see what he thinks but that will be end of Nov. With nothing major done until 12/1 unless an emergency. I can finish therapy now w/o gleevec. Stomach doing fine off gleevec.