11 replies to this topic

[Angeelika]

My mother was diagnosed with CML over 10 years ago and has been on Gleevec with excellent results those 10 years.  This past year she has all of a sudden had serious heart issues (Afib, low heartbeat) amongst other things as well as high blood pressure.  She's convinced it's the Gleevec.  If she doesn't take it for a couple of days she feels a lot better.  Has anyone else had these side effects and what did you do?  The idea of her getting off of Gleevec scares us.  The other medicines out there seem worse.  Researching online this doesn't seem to be a common side effect.

[scuba]

My mother was diagnosed with CML over 10 years ago and has been on Gleevec with excellent results those 10 years.  This past year she has all of a sudden had serious heart issues (Afib, low heartbeat) amongst other things as well as high blood pressure.  She's convinced it's the Gleevec.  If she doesn't take it for a couple of days she feels a lot better.  Has anyone else had these side effects and what did you do?  The idea of her getting off of Gleevec scares us.  The other medicines out there seem worse.  Researching online this doesn't seem to be a common side effect.

 

What are your mother's latesst test results? Is she PCRU (or PCR < 0.01%)?

[Angeelika]

yes molecular level shows cancer free

[scuba]

yes molecular level shows cancer free

 

Your mother is most likely a candidate for treatment "cessation" in which she stops taking Gleevec and has her PCR monitored on a monthly basis. There is a 40% chance that she will be able to remain off therapy and have no return of the CML. If CML were to return (as detected by PCR) she could resume her therapy and return to undetected status.

 

Alternatively - research of late is also showing the viability of "pulse" treatment where she would stop therapy for a month and then resume therapy for another month. 

 

Another option is to reduce dose by half or even 3/4 to reduce side effects (heart issues?) but still keep some drug in her system as a prophylactic.  In each case risk to your mother by stopping, reducing or modifying treatment is low.

 

All TKI's put stress on the heart. These drugs are toxic, but when faced with CML, they are life savers until something else gets us. In your mother's case, I would be more concerned about her heart than about CML. Her CML is under control - may even be gone. We'll never know - but at least it can be monitored and you have time to react.

 

Getting her off Gleevec should not scare you. With knowledge and a plan of action comes confidence and fear is reduced. We have learned a lot about CML in the last 15 years. Take baby steps, perhaps through dose reduction on the way to stopping. It is important to note that CML is a slow disease when in chronic phase (few or no blast cells). For those who are "undetected" as your mom is reported, CML will take a very long time to expand in the absence of a TKI. That's why monitoring monthly will easily catch it so action can be taken.

 

Discuss this with her doctor. There is a fair chance he/she is up on the latest data involving dose modification and cessation and can suggest a plan.

 

All the best.

[Angeelika]

Thank you so much for your quick response.  We are in the process of trying to find another oncologist in NY since the one we usually go to just said if we stop taking the Gleevec she'll die and did not think there was any correlation with her heart and the Gleevec.  Hopefully we will find someone that can guide us better as you did.

[rcase13]

It's hard to believe there are doctors out there like that. You are doing the right thing. At the very least she could stop taking it for a couple months to see if things improve.

Best of luck!

[gerry]

Sometimes it is hard to tell whether it is Gleevec related or not. I've been off Gleevec for coming up on 2 years next month.

 

I found my cholesterol issues and high BP have returned since stopping the Gleevec, but I have also just gone through menopause, so the loss of estrogen can affect women as well. Afib is pretty common, my brother and mother had it and I know a number of other people with it.

 

Your mum is a good prospect for stopping, but you will need a doctor to work with as she will need regular testing, current opinion is monthly, but my doc has me at every two months.

 

Good luck with changing your doctor.

[Trey]

Make sure she is also seeing a Cardiologist.  We cannot just assume heart issues are side effects. 

 

Regarding Gleevec, the first thing to do would be dosage reduction if she is still taking 400mg daily.  She should find an Onc who will reduce dosage down to 200mg daily.  That is a very safe approach and could also help show whether this is a side effect.  Reduced dosage often relieves many side effects. 

 

Given her long history of good response, she has several good options, and an Onc who is flexible should be able to help her select one. 

[scuba]

When I first started Sprycel, I had heart palpitations develop. They were not severe or even bothersome, but they were noticeable and unusual for me. More like beat skipping. I mentioned this to Dr. Cortes and he suggested I take Magnesium 250mg per day. Within a day - cramps gone and I never had the heart palpitations again. I take it at night for a very restful sleep. 

 

Many patients overlook the importance of magnesium - especially in older people. It is vital for muscle function and our hearts are a muscle. TKI's can deplete us of Magnesium.

 

Something to think about.

 

http://blog.wellness...iciency-part-2/

[RayT]

If you mom is in Upstate NY anywhere near Syracuse, I HIGHLY recommend Hematology-Oncology Associates of CNY (www.hoacny.com). They've kept me alive for over 30 years, first Hodgkins Disease and now CML.

 

As far as the heart issues, make sure your mom's cardiologist and oncologist are talking to each other.  Mine are excellent at doing that. I had my heart attack (inferior wall MI) 30 years ago thanks to Adriamycin chemo for the Hodgkins and have been taking Gleevec 400mg for almost 2 years now.  I have CHF do to the MI and go from being dehydrated to "human water balloon" (pleural effusions) in the blink of an eye.  Without good communication between her docs she'll never get the proper care she needs.

[Angeelika]

My mom has been seeing a couple of different cardiologists and was a cardiac RN herself for 25 years so she's pretty good at understanding what her heart is doing just not able to figure out why.  They did EKG's, echos and haven't been able to find anything physically wrong with her heart (other than slight mitral valve).  The 24hr holter monitor she had on was a complete mess.  PAC´s( Primature atrial contraction), PVC´s(Primature Ventricular contraction), Bigemeny. Runs of Vitac, runs of SVT,  I think the next step was some kind of test to see the electrical activity in the heart while experimenting with different cardiac meds but her quality of life has gone downhill to the point she spends most of the time in bed so she decided to just get off the Gleevec since this seems to help.  I got her in touch with 2 oncologists in NYC on the Castle Connolly top dr list.  1 of them seems to have some history in the original research on Gleevec.  He did not recommend lowering the dosage but mentioned a clinical trial in NYC on stopping the meds.  I'm not sure she's capable of travelling down there often but we will meet with this dr in a couple of weeks.  Anyone know what these clinical research studies usually involve?  I will mention the Magnesium to her as well.  Anything is worth a shot at this point.  Again, I'm very grateful for everyones responses!

[Trey]

This may sound odd but she should increase intake of several types of minerals.  I am not a vitamin freak, this is just a fact with the TKI drugs.  The TKI drugs deplete minerals significantly, and they are key to proper electrical activity in the heart.  She should also follow on with the rest of what she is doing, but try to get her to take a combo multi-mineral supplement.  Mineral depletion from TKI drugs can be a serious issue.  And even if it is not her exact issue, it won't hurt to do it.