Hi,
Just wanting to know if there is anyone else out there who has developed left ventricle damage as a direct result of Herceptin? I was on 9/18 when it happened. Herceptin is not going to be continued. Symptoms were palpitations and increasing fatigue, especially on physical exertion. Now on heart meds to support heart. Hopefully will recover in time. Be interesting to hear from others. how long does it take to recover? Feeling worried by what has happened.
Hi there, two threads are running in latest posts about heart damage, I have posted in both, one is long term side effects of chemo and the other is called diagnosed with cardiomyopathy. If you are logged in click on my name, go to my latest posts and you will be able to find the threads. Take care, we often recover well. X
Hi Wavey and Marli, hope you’re both good ??
Flippin ‘eck Wavey, you have a good rant. Yeh, me thinks you need to get stroppy, gently but assertively to begin with - if that doesn’t work, then rant, rave, stomp and DEMAND ! cos’ all of this aggravation ain’t doing your heart any good either, IS IT ! Just MORE stress. Good luck with it lovey.
Keep us in touch
Delly xx
Yey, Wavey, that’s great. If you wanna good blub, let it flow. I’m long down the line of 9 years and I still get upset and wobbly when I talk about BC (Big C**P!) tho’ there’s been a whole load of other stuff since on top. I’m a far more openly emotional person than I used to be, but also don’t suffer or put up with fools so gladly, less tolerant with certain things but MORE with others such as fellow BC’ers. I also still feel very angry which isn’t so good - okay if I’m on my own, can have a good stomp and rant till I’m red in the face which I do do sometimes.
I know our paths have crossed on other threads Wavey, and I’m sure you’ve probably posted details elsewhere, but just refresh me what’s happening recon wise with you?
And Yeah, aren’t people ab fab on here - helpful, supportive, non-judgemental. I feel it’s been responsible for a bit of a recent turnaround for me and am hoping I stay that way 'cos it’s a bit unpredictable.
Love to you and all else who’re looking in
Delly xx
Hi to all here
Wavey - awwwwwwww.
How lovely that that nurse “picked you up” off the sob floor. Just what you needed I bet. It’s a horrible roller coaster this dratted bleep of a disease. They must be so used to people getting upset.
Being a delayed implant recon girl who never ever wanted self tissue recon, I’m not as useful on Dieps. My surgeon who performed both my Masts was pushing Lat flap at me. I was quite small at 34 A-B and I thought I remembered him saying Lat Flap suited smaller women - all to do with the size of the tissue they can remove. In my more recent recon discussions (8yrs later), I was still thinking implants and he was happy to do but still spoke of using part of the back muscle which I still didn’t want due to extra scarring and extra poss healing risks. However, I changed surgeons and went ahead with expanders and got through all the stretching appts - haven’t yet had the silicon replacement op.
So is Diep tummy or thigh? And I know you’ve posted it elsewhere, are you a single mast lady for “delayed” recon ??
How are you feeling today - you a bit calmer ? and still doing okay on your meds ?
Lotsa love and a hug Delly xx Love to everyone else xx
Hello to everyone and again to you, dear Wavey.
Good to hear from you. We’ve had an exchange on elsewhere posts since on here. Glad to hear you really enjoyed your Malta hol. An interesting island i’d like to revisit sometime, having only had a brief day visit many MANY years ago (40!!) when I flew to to embark on an “Educational” school cruise round the Med!! It has loads of history, doesn’t it.
No, I’m no further forward with my recon. Dived back into a dreadful mental downer slump beginning of May. I’ve had a little +ve “shift” today, which I’m hoping I may be able to gradually move forwards from. Knowing myself from past experiences of, I shalln’t be convinced until it’s lasted a few weeks, am bi-polar. I can cope more easily with the manic “uppers” than the manic “downers”… Nuff of all that.
Bad enough you have BC to cope with, without the extra of your heart probs.
On a very personal note - did you go to Malta with a significant other?? If so, go on, do tell. Or are you still single??
Loadsa love
Delly xxx
Hi wavey. Your story sounds very similar to mine. My ejection fraction had dropped to 31 before anyone seemed to notice the echos had showed a downward spiral. I always felt tired and sob and was thinking I was just getting lazy. Herceptin stopped for now and I’m on ramipril and bisoprolol. They said they will restart herceptin if my levels go up but I’m not sure I want to take the chance. I’m finding it very difficult to find info on Internet about this predicament. Do you hVe any idea where I could find stats siupporting one decision over the other.
Hi again, you Lovely Women,
Wavey and Curly - How flippin “cute” is that with your names! Obviously meant to be in touch with each other.
I’m NOT glad ANY of you are on this Forum for the reasons you are, but I AM soooo very glad that you all have others here, to be able to share your similar problems and experiences. Be that to support and “bolster” each other up, or bounce ideas off, advise each other. Is exactly why this 'ere wonderful Forum is so invaluable and whoever had the foresight to set it up, really deserves a Dame or Knight-hood.
I’m “struck” by your heartfelt desires and hopes, that future women hopefully won’t have to go through similar to yourselves - that’s a selfless and extremely compassionate way to thinking and attitude.
Hope you’re all improving with your heart probs, however slowly that may be. Am wishing you the continued “Patience, Steadfastness and Perseverence” to carry on with all that entails and to keep kicking at this BLEEPTY disease and the nasty horribly unwanted effects you have suffered from it.
Loadsa Love to ALL of You
DoolallyDellyDingDong xxxxxx
Hello everyone.
Reading through all the posts is so encouraging.
I got through all the treatment, then was told that my heart muscle was damaged.
will be seeing Heart Specialist next week, must admit I am nervous. Don’t know what to expect.
My Oncologist said the damage was mild,
Would really appreciate hearing from someone who understands my anxiety.
love to you all.Cate.
Hello everyone.
Reading through all the posts is so encouraging.
I got through all the treatment, then was told that my heart muscle was damaged.
will be seeing Heart Specialist next week, must admit I am nervous. Don’t know what to expect.
My Oncologist said the damage was mild,
Would really appreciate hearing from someone who understands my anxiety.
love to you all.Cate.
Hello Cate,
I just wanted to acknowledge your Post and wish you well. It’s not like you don’t have enough to deal with without the added extras.
Fingers crossed that it is mild and recoverable from (as can occur). Was it diagnosed from a drop in LVEF score? Does it impact on your daily life? I hope it does not affect you too badly.
I had herceptin too (finished April). I have not been diagnosed with heart damage, (sometimes I wonder as breathing capacity reduced since chemo). Heart function score dropped from 80s to 60 before final treatments. Wish they had done a scan right at the end as well. The additional prospect of heart damage was just another challenge to deal with. Having the Muga scans or Echo and then hoping that if there was any deterioration it would be minimal and you could carry on with treatment etc. One more thing after another eh?
Take care Cate, wishing you well with Cardio appointment next week ? x
Well done Cate for all the fund raising. Love the name Adventure Before Dementia - very good. Take care lady and all the very best to you ? x
Hello Jay68,
Well done you for all the fund raising. I hope all your appointments go well and the heart damage heals. All tge very best to you ? x
Hi all, just reading through this thread and found it interesting Jay that anything below 60% requires medication. I have had 11 injections and after my 2nd heart echo my heart function was at 54% which was down from what it was, I’m not sure what is was at the start. They debated over giving me Ramipril as I have quite low blood pressure anyway and then said I didn’t need it. My last echo my heart function was at 55%, I’ve been advised this is within a normal range.
I’ve not noticed any issues and do exercise other than keep having to take really deep breaths, but unsure whether that is an effect still from the chemo or the herceptin. I’ve got herceptin no. 12 tomorrow and another echo on Thursday.
I guess it’s just a case of trusts have different opinions but I find it is a constant worry as to what damage it might be doing but really want to continue with it as it is hailed a wonder drug.
Good luck with your appointment Cate xx
Hi all,
Just reporting back following my FINAL oncology appointment!
My oncologist is happy - the recent echo heart scan shows my heart is acting well - back to 60% - so I can stop the Ramipril with immediate effect.
I’m happy too and that means I’ve now been removed from the onology department follow ups - fingers crossed that’s forever…
A great feeling - a great day!
Love to all Jay68 xx
Hello Jay68,
Bleeding brill! ? ? ? ?. ? X ?
Just wanted to share this research with anyone on Herceptin. Research into Herceptin and heart problems: eurekalert.org/pub_releases/2018-03/uok-std030918.php