Hi, 

I have had similar issues as yourself. My heart was affected by EC chemo and I was on the borderline for starting Herceptin and Pertuzamab- my lvef had dropped and part of my heart wall wasn’t moving properly. I had my first Docetaxel on its own then the 3 subsequent doses with the H&P. My heart has been monitored regularly and since finishing the EC my lvef has increased and the heart wall is now back to normal. I’ve just had my 12th H&P and suffer from tiredness and heart palpitations so I’m now waiting to get a 24 hour Holter monitor fitted to check this out.  

The EC also badly affected my veins - I had cording, cellulitis and blown veins so ended up with a portacath being fitted which has made life a lot easier. I still dread having any needles or cannulas in my right arm, even 7 months after chemo finished my veins aren’t great and can’t use my left arm for bloods as had anc on that side. 

Good luck with your treatment, it’s hellish but better than the alternative! 

Hi, I'm due my 7th herceptin tomorrow, I'm only having 9 in total as I'm on a trial. Throughout my heart has been well monitored and I had my 3rd heart scan 2 weeks ago  and am awaiting the results .

I do know hp can affect the heart but my onco also said the heart can recover ....

i do get palpitations but im still blaming this on the chemo which I finished in May.

your mind will be put at rest once you've had your heart scan, our bodies have taken such a huge battering. Some days I'm amazed I can get out of bed! Lol....

Hope everything is going well....x

Thank you for the reply. I truly hope that your heart issues aren't permanent and fingers crossed for you. 

I was told that I'd receive Herceptin and Pertuzumab via IV infusion for a year, but this has now been changed to subcutaneous injections of Herceptin in my thigh. I can't help but think that this has been altered due to the vein issue in my left arm. There was talk of fitting a portacath but this won't be required with the injections. 

The Consultant says one thing and members of her team say another. Is it usual to give Herceptin alone for a year without the Pertuzumab? 

Can you use your arm now? Mine is painful and I can't straighten it or lift anything heavy but I can look after myself. Ibuprofen gel helps with the pain.

I get the herceptin by injection in the thigh. Yes, I struggle with stairs ( never used to) it can be very frustrating, especially when I can't keep up with my 88 year old mum in law, it has improved a little since finishing chemo but I do really need to pace myself....xxx

Hi SamKatz,

As others have said sadly heart failure is a notable risk with Herceptin, similarly Perjeta (pertuzumab). I was only given Perjeta in addition to Herceptin because my ejection fraction is higher than most healthy people's (including my oncologist's). But over time the H & P will probably cause me some heart failure.

I'm working on my cardio fitness to minimise the damage as I'll be on H&P for as long as they can keep me alive or until the damage to my heart is too great, whichever happens soonest. I have an echo done every 3 months for this reason. It's worth noting that exercise can increase your ejection fraction but obviously you would want to take guidance on what it is safe for you to do.

Sorry I'm not up on thrombophlebitis :( Hope others are able to offer some help there.

Worth noting that there's every chance your fatigue and breathlessness will be down to low haemoglobin levels. I had this a few times and, on one occasion, they did a blood transfusion. The improvement was amazing and immediate. Any damage to your heart from Herceptin or chemo does normally take time, wherease low haemoglobin symptoms can occur very early on in treatment and come on very quickly.

LJx

Hi TwinTwo,

Thank you for the reply. Exercise is difficult at the moment due to the fatigue and shortness of breath. I washed the kitchen floor this morning and had to keep resting because I was puffing away. 

Hopefully the echocardiogram next week will shed some light. I'm crossing my fingers that it is the low haemoglobin level as the symptoms came on suddenly after the seventh cycle.

Good luck with your treatment. 

Of course, I wasn't meaning it as in something you should do right now :) I remember all too well what it's like to not be able to breathe.

Really hope it's a Haemoglobin thing as that can have a pretty 'easy' fix. As an example, a few months back my Palliative Care doc decided I needed a blood transfusion due to my breathlessness. I turned up for it the next day and took the two flights of stairs as usual, but got stuck after a few steps due to the breathlessness. After the transfusion took the stairs down, realised I'd forgotten my bag, ran back up the stairs and was barely out of breath on re-arrival in oncology. 3 days after the transfusion I ran 3km and fast-walked 7km and I could have happily kept going I felt so good.

Hi SamKatz

I get my H&P via infusion - I don’t know what criteria determines whether you get both or just Herceptin..? Cost probably but my oncologist says Pertuzamab could make a big difference so I’m glad to be getting both, despite the side effects. I would ask your oncologist about the change and reason behind it, as I said the portacath (or a picc line) could make it a lot easier.

I can now straighten my arms without any pain or ‘pulling’ sensation under the skin so hopefully yours will improve too once chemo is finished and your body recovers a bit. My problem now is any needle in my arm, however small, leaves a massive bruise that lasts for weeks and even if they manage to get the needle in my arm my body is often reluctant to part with any more blood!

Hi Twin Two

I'm Marie & I have sent a lengthy mesage to the Forum & other areas about HERCEPTIN damage to my heart that has been treated very flippantly & unexplained to me properly to date.  My Herceptin stopped in February 2020 & I know there was a hiccup after the first herceptin jab due to something the Pharmacy & qty involved was then stopped & I had a echogram that showed my count was only 63 & they wanted me to see a Cardiologist which I did & was told to resume HERCEPTIN again having rewgular low readings after each & every Echogram??  I have had all of the bad symptoms in the past that I put down to coming off HRT when it was the HERCEPTIN & have ended up in hospital with a mini stroke or a transient neurological attack??  I want answers now as I  feel as if my pounding heart that wakes me up nightly & the heart arrythmia is not being taken seriously enough after going through the gruelling Chemo etc etc., why should I have a Heart problem that I never had in my life ever???  I am a very positive person & I do so much work in our very large garden to keep me well & truly exercised, but over the past 4-5 weeks I don't feel great all of the time as I did.  My 1st cousin died from a heart failure & she had Breast Cancer too!  If anyone can inform me of The Body of Authority who should be answering all of the questions that have been answered to date, I would be so grateful please.  It's not just about me but if HERCEPTIN is causing heart failure & death what was having all of the other treatment all about when the NHS know all about the HERCEPTIN & Heart Damage for years?