MUGA scan results

We all know what bad news does to us - and I am no different from anyone else! I am supposed to have MUGA scans every 6mths. Someone slipped up and didn’t book it so my last one was in January. 4 weeks ago I went for my herceptin & zometa and the script wasnt signed for so the registrar came round to check I was ok and said it could go ahead, but get scan before next herceptin. Scan date came thru post for the morning of same day as the next treatment. They couldnt report on the results in time for my herceptin in the afternoon, but still said it was ok to go ahead. That was Tuesday last week, then on Saturday morning I got a card thru the post with a MUGA scan booking for 5th October. I panicked - well what was I supposed to think. I think herceptin is keeping me alive & kicking and had visions of me turning up for my next one and them saying I couldnt have it till after the October scan, if that was o.k. These things always seem to happen at weekends, just long enough to get us well worked up. On Monday this week I phoned the consultants secretary and she was kind enough to tell me my scan result was an LVEF of 59 which was good for me and no problem - she thought the new scan date was an error.

Because my pain has been getting a lot worse I asked if I could go in to see the onc the next day. I thought it was time I asked for a CT scan as the last one was in 2006 (my choice) and I have this horrible naggng feel things may not be o.k. The onc thought another MRI was more urgent to make sure nothing more was going on either with the latest soft tumour alongside my lower spine, or in the spine itself with the bone mets, but he has booked me a CT scan as well as the MRI - so I am going to get my MOT :slight_smile: and fingers crossed there aren’t any more tumours doing sneaky things.

The Macmillan doctor then came out to see me at home today to talk over what we could try next to manage the pain. She is suggesting I try oral ketamine, and spend the day at the hospice so they could monitor my reactions to it (it is 3x a day) and she is trying to set that up for Monday 6th Sept. I think when get pain that never seems to stop, no matter what you throw at it, you are willing to give most things a try.

I feel between the NHS and Macmillan I am being well looked after.

Dawn
xx

Hi Dawn,
well I noticed your post had not been spotted yet and just wanted to wish you well. I think effective pain relief is the very least we expect and deserve given all the rest of the crap to deal with. Good luck with the new drug they plan to try. I hope it proves the answer for you and I know other people will benefit if you can post how it went.
Hope you will be ok until then as the 6th is quite a way off
Lily x

Hi Dawn

Glad to hear your onc team & Mac nurse are ensuring you get your MOT and pain relief as soon as poss – it’s awful being in pain and anxiety! Good luck with both – thinking of you.

Marilyn x

Hi Dawn

Just sending you my best wishes for the 6th (hopefully that date is confirmed now), hope Ketamine is effective and ‘user friendly’. I’m struggling with pain relief at the mo, it’s so debilitating, so I can really sympathise with you.

Linda
x

Hi all ‘struggling with pain relief’ at the moment. Ooh I do so empathise. I seem -disappointingly - to have hit a rocky bump along this road and have been battling with gastritis as well as excruciating pain in a range of sites in my back. Pretty sure my bone scan on 8th Sept will confirm further mets and just hope thay can be dealt with. However,it is the all-absorbing impact of the pain which has reduced me to a bug-eyed, sleepless, non-eating wreck!
All I can say is that I echo Dawn’s praise for the NHS but oh so very much for Macmillan nurses - mine is proving to be an absolute honey. BCC is brilliant but, when the chips are down, to have a visit from someone who can facilitate and implement truly responsive meds and care is a godsend. Hooray for them…

I do so hope that you also are now getting targeted and effective relief and that the paths ahead are not too rough for us all.

What is a MUGA scan, I have never heard of one of those???

Sue x

Hi susie,

The MUGA stands for Multigated Acquisition Scan. It is necessary to have these scans, usually every 3 months when on herceptin, because one of the serious side effects of the drug is that it can damaged the muscle of the heart. One of the best descriptions I found is on the website
medical-dictionary.thefreedictionary.com
A snippet from it says:

“The MUGA scan measures the heart’s function and the flow of blood through it. The strongest chamber in the heart is the left ventricle, which serves as the main pump of blood through the body. The left ventricular is assessed by measuring the amount of blood pumped with each heartbeat (the ejection fraction), ventricle filling, and the blood flow into the pumping chamber. A normal ejection fraction is 50% or more. The heart’s ejection fraction is one of the most important measures of its performance. The right ventricle’s ability to pump blood to the lungs is also assessed, and any abnormalities in the heart wall are identified. The MUGA scan is the most accurate, non-invasive test available to assess the heart’s ventricles.”

Dawn
xx

Okay, thanks for the explanation. I am not HER2+ so I had not come across this. I hope your pain is being managed better by now Dawn and that you are more comfortable.

LOve Sue x

Hi Dawn
I don’t have MUGA scans any more I was told that I could continue if
I wished but research showed that if you don’t have heart problems early on then you aren’t going to. As my consultant said ‘what do we do if your MUGA scan isn’t good - you have to keep taking the Herceptin’.

I too have asked for a CT scan (1 sept) so let’s hope we both get good results.

Hi blondie :slight_smile:

Don’t suppose you can remember what research you found about ongoing MUGA scans? Is it likely to be adopted by NICE? I remember a few years ago my LVEF went down to 42 and my onc was suggesting I needed a break from it. Fortunately I managed to make him change his mind! I did ask him what else he had to offer me. As I had no other symptoms of CHF he agreed to leave me on it and check again after 3 mths.

I will certainly be asking him if we can scrap the MUGAs but would be helpful if I could print out some research articles to show him. I find it is one of the scans that does cause me a bit of anxiety because I fear that without herceptin things would get out of hand. How long is it since your last CT - dunno if you are like me and prefer not to have routine CTs but to be scanned when I ask for it. That recent scare with the new tumour does leave me wondering if ‘it’ has gone anywhere else. The onc seemed to think it had been growing for quite some time. Hoping we both get good results.

Dawn
xx

Hi Dawn,

Have just found your thread,so sorry you are going through such an anxious time, and as you say these things seem to happen at the weekend,when you can’t get hold of anyone, and by that time you are a nervus wreck!! I do hope that you get good results from the scans,everything crossed for you!

I have developed a new pain in my hip,so rang the onc’s sec, and he wants to see me on Wed, so I expect he will order another scan for me,so hoping, but not very optimistic that my mets haven’t spread.

Thinking of you, and thanking you for all your wonderful support!!

Take care, lots of love, Mary xx

Hi Dawn
It was the Registrar that told me that there was research re MUGA and that problems were in the initial stages or not at all (my Onc was not so specific).
I have treatment on Tuesday (CT Scan Wed) so I will ask around and see if I can get a reference for you. Failing that, I will see my Onc for the CT scan results next week (fingers tightly crossed, and everything else too let’s face it) and put him on the case!
Hope your CT scan is favourable.
I’ll be in touch when I have news.
Love
Blondie
ps we must meet up again some time soon - I remember my visit to your place with great fondness, lunch was great too!

I have had herceptin nearly 70 times and still go for a muga every 3 months, although my heart has always been healthy - around 59. My onc says that he’s not allowed to give herceptin unless the patient’s heart is checked every 3 months, so it looks like different hospitals have slightly different rules.
LOL, Lynn

Hi Dawn,
I’m so sorry to hear you’re having a worrying time lately. I really hope things settle down again and you get good results from your scans.
I’ve been on herceptin for 3 years and still have 3-monthly MUGAs. It seems to be a requirement for getting more treatment. I’ve had some worrying times when the ejection fraction went below 50%, but as i had no other symptoms I’ve always been able to continue with treatment. It’s never been above about 53%.
A strange thing happened earlier this year though. Instead of a MUGA I was sent for an ultrasound/echocardiogram (not sure if it was a clerical error or a result of the global shortage of one of the injections) the result was 64%!! When I saw my onc I asked whether it wasn’t after all a very exact science, and he seemed to agree. So all that worrying over one or two percentage points…
Take care everyone
Jacquie x

Hi All

Just thought I’d add my experience.

Reading the description of MUGA scans, I realise I’ve never had one. I had echocardiograms/ultrasound every 3 months with the primary but I’ve never been scanned with the secondary- Herceptin 38 now. I asked the onc and he said you are well and what do we do with the results of the scan? I know other onc’s at the hospital do scan because the nurses have asked me about it. My onc is a Proff of Oncology so I’m happy with his decision.

Love
Sue xx