Forum Discussion
43% cardiac output. How come I feel so well?
I went for my 3 monthly heart scan last week, I continue on herceptin. I had to stop for 4 weeks as my cardiac output dropped to 44% . It was rechecked in a month and back to 58% ...but better method was used apparently, so herceptin restarted. So there I was last week...new technician who says oh a couple of ways to do this...chucks the stuff in my veins then says...oh this method can have a 5% inaccuracy. To say I was pissed off was an understatement. My comment was well that's not good...it could mean my treatment being stopped. So results back in 43% I am livid. Will have to wait now and see the decision of the oncologist.
When it was 44% I was symptomatic. Breathless when walking. Fluid retention...heart pounding. I was 18 kg heavier too, though. I have since lost that. I have recommenced swimming. ..the last 2 weeks doing 32 laps of a 25 m pool. I have got my step rate up daily and started Zumba again. 1 hour sessions...not doing the whole lot, needing to sit out 3 or 4 songs in the hour ...but it has been 38 degrees on those days.
So...could it really be only 43% and me feeling so absolutely well and fit again. Or is it just a flippin bad test.
What do you think ladies?
When it was 44% I was symptomatic. Breathless when walking. Fluid retention...heart pounding. I was 18 kg heavier too, though. I have since lost that. I have recommenced swimming. ..the last 2 weeks doing 32 laps of a 25 m pool. I have got my step rate up daily and started Zumba again. 1 hour sessions...not doing the whole lot, needing to sit out 3 or 4 songs in the hour ...but it has been 38 degrees on those days.
So...could it really be only 43% and me feeling so absolutely well and fit again. Or is it just a flippin bad test.
What do you think ladies?
40 Replies
- Hey Kath. I know how disappointed and cheesed off you must be feeling. What was the reason for not restarting after another break? Captopril worked a treat for me and we restarted when I went back up to 54% LVEF. My baseline was 71%. How many more did you have to go? Sending you a giant soft teddy bear for you to kick.
- It's so hard, Kath - can imagine how upset you feel. If it helps, my GP said to me "It's no good being cancer-free if you have a heart attack!" after which I agreed to go on statins. Maybe it will just be a break which shouldn't make any difference overall. xx
- Kath, totally get your fear and anxiety, it's so hard to not spin off out of control . I agree with Afraser. Take a deep breath and a step back, as right now you can't do anything until you see your Oncologist. It's normal to panic if treatment ceases and not knowing if and when it will resume. I think you're doing great honestly, so stay in this moment use this time to nurture you a little. I know when I hit a bump, I stopped and loved myself a little more and reassured myself that I was ok. We're all here. Hugs Melinda xo
- Oh I am so sorry as I can imagine how disappointing this is. Fingers crossed your oncologist will consider a break and restart. A short break won't make much difference. Not restarting may make no difference either, and you will be fine anyway, but we all want to feel we've done everything we can. Keep your spirits up, you've been such a support to others, we all want to help you through this bump in the road.
- Decision is at this stage...stop treatment probably not to restart. To say I am devastated is an understatement. I don't see the oncologist for 2 weeks to argue my case gor at least a retest before making a decision and why I can't just have a break and restart.
The fear for me despite the obvious is what hapoens now if I do get metastases if I can't have herceptin? . Truly ...this terrifies me. - Can't believe you haven't had a decision yet - that's crap!! :(
- Kath wishing you wellness
Take care - Thanks for the report, hadn't read that but I have been having my heart scans 3 monthly, except when it dropped then 1 monthly...restarted herceptin 13 days past due time with a loading dose and returned to 3 monthly checks. The risks were well explained beforehand. Actually I had to sign a form to even get herceptin knowing the risks. I was commenced captopril after last drop which prevents heart remodelling and permanent damage and the report at least shows non of this has happened. Still awaiting the decision.
And yes I out of pocket every test as that report shows.
But with a grade 3 Her2+ ...the risk is worth it. - Hi Kath,
I think your technician needs a kick in the backside from his superiors - what an attitude!
Do hope that your Oncologist finds 43% okay to go ahead - your weight loss is admirable and you also have much better fitness levels than last time - well done.
I didn't have Herceptin as I am triple negative, but still had to take a Symbicort Turbohaler for shortness of breath at times, despite regular exercise and healthy weight. Just an after effect of chemo/rads I think. Best of luck! - Hi Kath, it must be frustrating to not know what you're actually dealing with and the attitude of the technician is appalling - we all need to feel confident about what is happening through treatment and that the tests are as accurate as possible.
It is possible that your new level of fitness has made your symptoms less noticeable. I didn't have too many symptoms when I experienced some heart issues while on Herceptin - some breathlessness - which I thought was to do with the radiation therapy I was having at the time. When I was tested it was down in the 40's (can't remember the actual level now) and I did have to stop briefly while I was referred to a cardiologist and put on heart tablets. I was also more closely monitored at that point onward. I only had a few more months to go but eventually finished the treatment and stayed on the tablets / monitoring for about 6 months after by which time my cardiac function was back in the normal range. Has your oncologist talked to you about what might need to happen if the test proves accurate so that you can continue with the Herceptin?
