Exemestane & cardiac symptoms

Natsubi

Hi all,
Apologies if this has been covered before but I am hitting a brick wall with my oncologist who has denied any knowledge of problems with taking anti hormone treatment such as exemestane and it aggravating pre-existing hypertension & heart palpitations. I stopped taking exemestane and my blood pressure average dropped 20 points and the bad headaches also stopped but my oncologist doesn’t think the drug caused the blood pressure problems. All they want to do is push another drug but I don’t want a repeat as it adversely impacted my ability to work & I didn’t feel safe as I had a hypertensive event whilst exercising.

Has anyone else experienced similar problems as I can’t believe I am the only one to have this happen to although my oncologist said she had “ never heard of this before”  or know of any current studies or literature I can show my oncologists?  I feel like I’m being fobbed off and being labelled as an inconvenience as not wanting to tow the easy treatment line. Being in a regional public health system is also probably not helping with the quality of care & concern. 
Any suggestions would be welcome. Thanks

arpie

@Natsubi - welcome to the blog - I hope we will be able to help you thru any problems you may have. 

There is actually a long history of heart problems and other major side effects (specially with some chemo treatments) and I've experienced 'lesser' heart issues myself & am now on a 1/2 beta blocker to control palpitations/KERTHUNK!  I seriously thought I was having a heart attack & called the ambos!

If you are not happy with your Onc believing your side effect issues - you are allowed to change Oncs.  I did as my first male Onc was most dismissive of my side effects with Letrozole. 

You need to be able to discuss issues with your Onc without feeling fobbed off.  I am also in the public system in regional NSW and had no problems in swapping Oncs -and also see the same one all the time, unless she is ill or away.

Have you seen a heart specialist & had all the tests & got it documented?  Did you have chemo?  Some chemos are proven to cause major heart problems ..... 

take care, get checked out, & consider changing your Onc, I reckon!  xx

Fufan

@Natsubi. @arpie is right (as usual).  Get an opinion from a second oncologist. 

Afraser

Your oncologist is trying to deal with cancer. It may be worth seeing a cardiologist. When I started having tachycardia, my oncologist hospitalised me so I could see the first cardiologist on duty. It’s been an excellent relationship with both for nearly ten years, during which I have been remarkably healthy - both look after their own specialisations but work collaboratively. It can happen. Best wishes. 

FLClover

Yes, me. I’m glad you wrote this post as I was considering writing one myself on this issue. 

Mine is about my BP, which was always perfect. I started on Zoladex and an AI (Letrozole, then Exemestane and now Arimidex) 2.5 years ago, and have now noticed I have high BP. Both Zoladex and Arimidex have high BP listed as their side effect amongst others, so I saw my oncologist and mentioned this. He said he does not think that’s why I have high BP, and has suggested it’s my age. I’m only 42! It can’t be coincidence that I developed high BP about 2 years after starting these drugs that both list it as their side effect 🙄🙄. He also said it’s rare for a patient to get high BP from them, but I doubt he asks and checks the BP status of his patients. Also, oncologists are notorious for not recognising known side effects of drugs they prescribe. Anyway, we decided that I’ll take a 3 month break from the Arimidex but I’ll remain on Zoladex, which doesn’t really help me see if that’s what is causing it if I don’t take a break from both. Either way, I’m sticking to my own belief that the drugs are causing it, and tbh I don’t think I’ll continue taking them for the recommended 5 or even worse 7.5 years. The last thing I want is more drugs added to my already long list, that then in turn cause other side effects 😒. We shouldn’t be treating cancer to then get other serious conditions. 

Just my thoughts. 

Natsubi

Thanks FLClover. It is concerning that people’s frequent experience of oncologist is their refusal to recognise known side effects. Ignorance or unwillingness to accept any accountability for the problem they created. I got told that my headaches were not related despite headaches & dizziness being listed on the manufacturer’s information page. By denying causation able to avoid doing anything about it. I then had to rely more on my GP for help. Without my GP I don’t know how I would have been able to get through this as oncologist very unhelpful ( lazy?). Good medical treatment shouldn’t come down to chance.

FLClover

@Natsubi you’re absolutely right 😐😒. 

Carissa_BCNA

Hi everyone,

We hear the frustration that comes with feeling like you’re not being validated by your health professional especially when you’re experiencing side effects.

As per BCNA’s community guidelines and privacy policy, we have removed some of the comments made on this thread. Just a reminder, comments made in this community should never disparage or slander the reputations of health professionals or anyone else. This includes using information that is identifiable. Please refer to our community guidelines here https://onlinenetwork.bcna.org.au/discussion/21482/community-guidelines-september-2019#latest

If you have any concerns, please reach out to any of the moderators or contact our Helpline on 1800 500 258. 

Spursy

Hi @Natsubi, I  too had heart palpitations when taking Letrozole.  I stopped taking the tablets. My oncologist also said it's not one of the side effects, but at least he moved me onto another drug. So now on Exemestane.  This one has just started giving me aches and pains. 
I don't believe these medical professionals can say they've never heard of these side effects when you only have to read on this website all of the experiences the patients on here are experiencing.  
How come when we stop taking these drugs we feel better? 

Tri

Hi @Spursy (and other contributors)
Hope you’re doing well on Exemestane - I didn’t anticipate this AI phase of treatment (post chemo, radiation therapy etc) would have its own side effects, so much to learn 😃🌻 but I am grateful that my side effects (mostly aches) feel minor and far less disruptive compared to others’ experiences. 

For me it feels as if there’s an ongoing and evolving focus on improvement, and that the feedback loop from patients, advocates and data collection is contributing to better understanding. I was really heartened (pardon the pun 🤣) by this podcast (link below) where speakers from different specialities in the medical community discuss the real effects and research into quality of life and intersectional approaches to treatment. It’s great. 
BCNA and Breast Cancer Trials have links to an interesting podcast here 

https://onlinenetwork.bcna.org.au/discussion/26731/breast-cancer-trials-q-a-breast-cancer-and-heart-health?utm_source=community-search&utm_medium=organic-search&utm_term=breast+cancer+trials
 I mentioned it in passing to my oncologist and at a  subsequent catch up she remarked to me that she was heading off to a talk with the local cardiologists - all these things give me a sense that things are continuing to go in the right direction. Feels positive ❤️🌸

Spursy

Thanks @tri for that information.  I'm still having lots of pain in hands and arms. Anyway trying to remain positive. I'll be taking the panadol osteo a bit more now.