Hi all, I had surgery to remove a solitary brain met on 1st Feb and had 5 fractions of radio in march. Just found out my heart scan last week shows a drop in heart performance so no treatment.
I’ve to see oncologist Friday to discuss ‘options’. I asked nurse does she mean stopping treatment and she said I’ll have to decide whether to continue or stop. My worry is my cancer spreads so fast if I stop then it will probably come back and at this stage that scares me. Are there alternative treatments? I’m worried sick now.
Hi Signet,
It depends how much you LVEF (left ventricle ejection fraction)has dropped. Sometimes a rest can be sufficient. Mine has been 48% but is now 56 %.
Probably the best person to talk to is dawnhc as she has been on it a long time.
Can you get any further info ?
Hope you get this sorted !!
Julie xxx
I’ll know more on friday but it’s the wait and feeling panicked.
Sister was fairly concerned looking which scares me too, she didn’t tell me percentages but I’ll ask Friday.
Just wondered if this is really bad at my stage? If I’m on nothing I know it’ll just return and aggressively. Feel like I’m at end of road. They’re very quick to give up here and that’s worrying too
Hi signet,
My heart goes out to you. Stopping the Herceptin has always been my biggest fear too. I hope this is just a blip in heart function and that you can resume treatment soon.
Alison xx
Signet have you got any symptoms other than a drop in the LVEF like shortness of breath or swelling of ankles? If not and this is the first drop in LVEF you should really ask them to do another scan because sometimes there can be odd blips/interpretations of how the scan is read/who is reading it. There is not reason I know of why there should be a delay in doing that either. Often the next step is to refer you to a cardiologist. Mine put me on one of the ACE inhibitors which he thought would help when you are on herceptin permanently. I do recall when mine fell to 42% on one occasion (the NICE cut off point is 50%) and I persuaded the onc to let me continue, that the following MUGA I had the highest reading I had ever had of 76%. But mine usually averages around 56%.
There are a few new drugs coming out that are causing some excitement in the States like TDM1 and saracatanib. I don’t know if they are being trialled in the UK but this was one of the links I found
cancernews.com/data/Article/786.asp
Wishing you good luck with the meeting on Friday.
Dawn
xx
Alison thanks for your reply xxxx
Dawn this is helpful and interesting. I have been a bit short of breath but nothing major. I only had brain surgery on 1st feb and radio on 15th march x 5 days. Then the past week the whole family have had a nasty viral infection and d&v etc so the scan was done on day four of my having this horrid bug. I also came off steroids a week prior to the bug.
Could these things maybe affect results? I called the helpline here who were great and they told me to request a cardiologist. I need to hear what Onc says as she may be more positive x
all so confusing and worrying!!!
Lynn
Hi Signet
Just thought I’d add my experience. The cancer came back (bone) as soon as I came off Herceptin, I’ve now been back on it 3 years and it’s holding everything stable. My onc at Clatterbrige doesnt give me scans because he said what would we do if the test give low reading? He just looks for symtoms.
Hope things go well with your onc.
Sue