I had been coping well with mastectomy, chemo and returning to ‘normal.’ Then, after main chemo was over and I had been taking letrozole for several months with no big issues, I began to have terrible racing heart for hours on end on some days, that made life intolerable, and often meant I couldn’t sleep. Struggled to get help from GP or the oncology team. Often ended up in A&E as so similar to symptoms of a heart attack. Was told to stop taking letrozole but that made no difference to heart symptoms and very high blood pressure. I pleaded for some way to address heart issues and GP finally and grudgingly prescribed beta blockers and Amlopidine. I have now been told it is likely to be the herceptin that may have impacted my heart function. I have been having 3 weekly injections of it for around 9 months and had tolerated it well, I thought. They are now stopping the herceptin and I have been waiting weeks for a heart ultrasound, which should be tomorrow. In the meantime, although the meds control my blood pressure, I have days when I feel dreadful, nights when I cannot sleep, and cannot tell where the heart symptoms end and anxiety about damage to heart function begins. I am a psychotherapist in private practice and have had to pause my work, as I cannot tell, from day to day, how I am going to be feeling, or whether I will need be in the phone trying to get an appointment etc. I feel so let down by my GP and oncology team. And so annoyed that although I was flagging up the heart symptoms, they went ahead with 2 more doses of the herceptin before stopping it. I do not want to end up taking anti anxiety medication on top of everything else. I have been given an NHS psychology team phone triage application on Thursday morning. My husband is completely exhausted from trying to support me on my bad days and nights when I lose all hope that I will ever get back to feeling myself again. The bleak times are very bleak.
Hey @minnie7
Welcome to the forum and sorry you’re having a rough time of it at the moment.
Different scenario here in that I’m waiting on an appointment to discuss CT results as to whether my recurrence of breast cancer has spread elsewhere, but I just wanted to pop in to say I’m feeling that anxiety strongly too.
I’ve also had heart palpitations to varying degrees in general for some years now, although they’ve much improved since I cut out alcohol completely, and my anxiety can cause a racing heart so bad that I think it’s going to either explode or pack in! Up to now it has always returned to normal (touch wood!), but it is very distressing in the moment. I did have an extensive investigation into this years ago (multiple ECGs, echocardiogram and 24 hour monitor) and all came back fine.
Seeking support outside of your husband is a very good idea as loved ones can often find it difficult and I have found the support from this forum and from my counsellor to be invaluable.
I hope you manage to get some answers soon and in the meantime are able to find what you need to make the situation more bearable.
All the best. x
Thanks, mssteel.
And all the very best with your ct scan.
Did you have any ultrasound scans of your heart before or during treatment? I had to go at regular intervals during my Herceptin treatment. Then I had a scan a few months afterwards to check my heart function had returned to normal. If I remember correctly they were measuring how much blood is pumped out of one part of your heart when it beats.
During this time the nurses often commented on how high my blood pressure was. It was generally put down to anxiety over the injection. However it didn’t improve after finishing treatment so I am now taking Amlodipine.
Hi,
Thanks for responding. Sorry to hear you too have had your struggles with high BP. Yes, I too had heart ultrasounds throughout my chemo (which started with 3 months of weekly paclitaxcel, alongside the 3 weekly injections of hercpetin, and then for the last 6 months it has just been the regular injections of Herceptin). The scans and my BP were all fine until recently. But about 5 weeks ago, I suddenly began to experience bouts of my heart hammering away as if I had just run a marathon, for no apparent reason. After visits to A&E, phone calls to the chemo team, and much to-ing and fro-ing with my GP practice, I eventually got prescribed some medication to help with this, as deep breathing, mindfulness, yoga, talking to a therapist, etc. were just not enough to manage it. So I too now take amlopidine, and also some beta blockers, which have helped return the BP to normal. I am waiting for the results of the ultrasound; the technician on the day said she couldn’t see anything amiss. But I was supposed to see my oncology consultant next week to discuss the results in person, but that appointment was first put back 2 weeks and has now been cancelled altogether, leaving me in limbo until they offer me another one. It’s this sort of being messed around re appointments that doesn’t help with anxiety and high BP! The whole experience of getting a cancer diagnosis and then the treatment has just been off-the-scale stressful for me. And I also think one of the side effects of Herceptin itself is that it interferes with one’s ability to regulate moods, leading to swings of intensely anxious and then intensely depressed states. I am really hoping that if I give myself time to let the herceptin clear out of my system (which I gather is often around 3 - 6 months), I will have a chance to let my body re-learn that it can regulate itself, and I may be able to slowly wean myself off the BP medication, under the monitoring of my GP. My last dose was 3 weeks ago. So I have some time to wait. And in the meantime, I need to be able to manage day to day stuff, and the awful sleeplessness that often goes hand in hand with high anxiety and BP does not help. I hope the results for your heart scans were ok. And that perhaps, once enough time has passed, the horrible stress of your treatment will fade, gradually. Maybe, some time in the future, we both might not need to take amlopidine any more… And if we do need to be on BP meds for the foreseeable, then so be it. Good luck with your ongoing recovery.