Well, wouldn’t you know. Just as I’m starting to feel like I can handle this I get a phone call from a nurse asking me if I feel ok. Er, not now that you’ve asked me!
I’m on Herceptin so I get a regular cardiac ventriculolography test (nuclear heart test) to see if the drug has affected my heart. Apparently my heart didn’t do so well in my latest test, with results dropping from 70% to 50%. I’ve only been on Herceptin since March 2019 and i’m reasonably young, fit and healthy so I’m a tad disappointed and nervous that it means I’ll have to come off the Herceptin.
And I don’t really know what this means. I’ll call BCN helpline tomorrow, but wondered if anyone else has experienced this?
I haven’t had experience of this but you have helped me out on here since I joined the forum and I just wanted to say I am thinking of you. I sincerely hope others will reply with their experiences.
It sounds a good idea to ring the BCN number tomorrow - your thoughts must be swirling in all directions at the mo. I am truly disappointed that you’ve had this telephone call and here’s hoping an answer or resolution can be found soon.
I don’t know much about Herceptin but wondered have you heard of Jo Taylor and her website abcdiagnosis? She’s been on Herceptin for about 5 years, she gives talks at conferences and always seems very up to date with research etc. She has a fb page and she’s on Twitter, @abcdiagnosis.
Yes I have had experience of this. Generally I think Herceptin can be given with an LVEF of 50% but a lot of local cardiologists ie not at research hospitals etc are unwilling to risk it and they will then normally give a week or 2 off Herceptin to help the heart recover.
When I had heart failure in 2013 I was due to start Herceptin but couldn’t. I was referred by my excellent oncologist to The Brompton Hospital in London where they have a cardio-oncology unit specifically set up to help with heart conditions caused by cancer or its treatments. Because they are specialists, and leading research, they can identify what heart medications are suitable and that increase the heart function. Not all cardiologists are aware of this therefore a dedicated approach is needed. If you can’t get to London for a referral I believe another unit was set up in the North somewhere, maybe Leeds? I remain under their care and believe me they saved my life so I can’t recommend them highly enough.
Please ask if you have any other questions and good luck
My LVEF had dropped from approx. 70% to 60% after 8 cycles of Paclitaxol/Purjeta/Herceptin. Since then when on 3 weekly Herceptin and Purjeta, my onco does not even send me for any ECG, MUGA scans. Only on infusion day, the chemo nurse asked me if any palpitation, shortness of breath. (I am quite ok with that. The most important is I can continue my treatment. I understand H+P are good drugs. I was not brave to clarify… I think I heard my onco said my Dec CT scan was clean(??) or clear(??)
You mentioned you take high dose curcumin during treatment in other thread. Maybe, you can check with your medical team and see what they advise to raise up your heart function to at least min level.
Below is the link which I have referred for diet during H+P
