Hi
As some of you will know I have finished all my chemo rads etc and am waiting to start a year of herceptin. I saw onc on weds 21 May to discuss treatment and get date for muga scan. After that appt she said she would see me in 3 months time.
I went for muga scan on Tues 27th May.
This morning I have just received a letter giving me an appt with oncologist for this coming wednesday 4th June. I am now panicking that there is something wrong with my heart… as I wasn’t supposed to see her again just yet.
At my last appt she said that whilst I was in the poor prognosis category following surgery, the chemo & rads and especially the herceptin would hopefully reduce the chance of recurrence considerably…
Now I’m terrified I’m not going to get the herceptin - I wish it wasn’t Saturday, I can’t even ring BCN to find out what’s going on.
Sorry for ranting - why do they send these letters so they arrive at weekends lol
Margaret
Hi Margaret,
It is quite possible that your appt for 3 months time was a standard one to allow the heart some recovery time from the previous chemo. Maybe the results were so good they can look to start you sooner on herceptin. So things may not be as bad as you fear. If only hospitals would get their act together and realise the grief they cause us with this sort of communication.
dawnhc
xxx
Hi Dawn
Unfortunately, we had already arranged that the herceptin would start sooner rather than later - I was asked to give my veins a break for 4 weeks and then it would start on 11 June - hence the muga scan.
Which is why I’m now assuming the worst - though I guess having had the muga scan early, I have time to improve my heart function within the 3 month time scale they gave me - assuming you can improve it?
Thanks for your reply
Margaret
Oh Margaret - It really has been one thing after another for you. It’s just too rotten. I’m sorry, I’ve absolutely nothing helpful I can say about your heart scan and the herceptin, but I know that waiting to speak to the nurses on Monday is going to make the weekend tough for you. At least you are seeing the oncologist on Wednesday so will be able to sort things out then. Hopefully this is just a minor blip, whatever it is. What I do know is that we just automatically jump to the worst conclusion. Like me last week wondering if my lumpy, red, painful breast could be some kind of malignancy - the (very young) registrar sat right up close to me “you’ve just had chemo, now you’re having radiotherapy, it can’t be something malignant” … reassuring I know, but said in such a way that made me feel pretty daft for even expressing my concern. Anyway, that’s beside the point really, I do hope that your worst thoughts on this are just that - but whatever happens, let us know, and you know we’re here for you while you’re waiting. You had definitely better have the summer off!!! Love Sarah x
Hi again Margaret,
I hope the the 4th June brings you good news and yes - MUGA scan results can certainly improve over time. I have been on herceptin now since January 2004 having MUGA scans regularly. Even whilst I have been on herceptin the results have fluctuated between 68 and down as low as 42%. Certainly after chemo some of them can bring it down but usually improve with a break. Fortunately I have been able to stay on it continuously but often they will take a break of a few weeks to let it recover.
Good luck and do let us know how you get on.
Dawn
Margaret,
I had an iffy scan recently - my initial one and three month one were both OK, then my six month one showed a decrease in heart function. There was some doubt over the result, so my 9th herceptin was OK’d but I was sent for another scan before my 10th herceptin. I saw my consultant yesterday, who said the results are still dubious, but asked me how I felt. Basically I feel fine (hot flushes, tiredness, stiff joints go without saying of course) but no symptoms of heart failure. So my consultant took the view that it’s OK to carry on.
These tests are really not an exact science. It can be very subjective. So what I’m trying to say is that maybe there is some doubt over your scan, but maybe your consultant just needs to speak to you about it? To confirm you are feeling well?
Thanks for your comments. Have just rung my BN to find out what’s going on. She has told me that consultant needs to discuss whether or not I go onto herceptin as my muga scan reading is only 51 and so borderline (50 is normal base line for herceptin).
She says the final decision will be the consultants - having weighed up the risk of heart failure against the benefits of herceptin. At my last appt with onc, given my original poor prognosis, she was full of how much the chemo & rads PLUS the herceptin would reduce my risk of recurrence considerably - so we shall see.
BCN has suggested that I push to have at least the first 2, then have another heart scan to see what effect it is having.
I did wonder if the chemo had significantly affected my heart rate - but my reading was only 55 prior to the chemo - so I guess I just have a lazy heart (OH would probably agree lol!)
Will have to wait and see what onc says on wednesday…
Margaret x
Hi Margaret,
Sounds like your BCN is giving you good advice. When I started Herceptin in 2004 my heart LVEF was 56 and over the 4 years has fluctuated quite a bit - going as low as 42 and at its best at 68 but generally hangs around 52-56. When it fell to 48 then 42 my consultant wanted to take me off it but I had no other symptoms at all. I persuaded him against NICE guidelines to let me continue as I had read on the american sites that there is a move towards allowing patients without other symptoms to continue despite low LVEF and they tended to recover. For me there are no other options as I had at that time used up all my chemo ones and herceptin has held my cancer in check now all this time. (I have secondaries). I really wish you luck with your decision, and hope all goes well.
Dawn
xxx
Thanks for that Dawn - you couldn’t point me in the direction of the sites you used could you? I just want to be ready when I speak to onc, because I really want to go ahead with the herceptin.
Thanks
Margaret x
Will see if I can find it again Margaret
dawnhc
Hi Margaret,
I have had a hunt around, but my probs were a couple of years ago now so I cant recall what the sites were. I have found a couple of helpful ones and will pm you the links to them. I think you need to bear in mind my situation which is slightly different to those being offered 1 years herceptin following chemo. The whole approach to patients with metastatic disease on herceptin alone, who do not have many other options, is to continue so long as they are asymptomatic. In some cases ACE inhibitors are prescribed where there is a low LVEF to help protect the heart.
dawnhc
xxx
Hi Margaret,
I wanted to wish you well for your appt tomorrow. Having an aggressive HER2 + tumour myself I understand that you want absolutely every treatment available to you. I started Herceptin in Jan (I was 35) but sadly had to stop after just 3. My LVEF pre-Herceptin was a very good 72%, but since then I have devloped quite severe heart failure. According to my cardiologist and onc this is likely to have been caused by the chemo I had rather than the Herceptin (a rare side effect apparently, typical me!!).
I know that people’s LVEF can change quite dramatically literally from one month to the next. Sadly it is never going to be possible for me to have Herceptin now as my heart is so damaged. However I do know of people who have had their treatment postponed or suspended, who then go on to finish the course of 18 eventually. This could well be the case for yourself.
Take care and I will be thinking of you tomorrow. Be sure to let us know how you get on,
Kelly
-x-
Thanks Kelly - I have spent most of today looking at the sites Dawn very kindly gave me - and all manner of other discussion forums similar to this one and have compiled quite a dossier to present my onc with as to why she should let me at least attempt the herceptin!
On the other hand it is only 3 wks tomorrow since my last chemo - so I guess she may decide to make me wait and test again - though given that my LVEF was only 55 pre-chemo I can’t imagine it’s going to improve much!
I think it just seems at the moment that I’m losing out all the time - was supposed to have 4 x tax (after 4 x fec and 20 rads) - but had such a severe reaction to it that they took me off it and put me back to 2 further fecs - so I already feel I’ve lost out on what is supposed to be the ‘gold standard’ - now I feel like I’m going to lose out on herceptin too - and can’t quite get my head round where that leaves me??
I spoke to my sister and brother yesterday on the phone, separately (they both live 200 miles away and are both older than me) - my brother was asking about the side effects of the herceptin so I told him about the heart stuff - his response was - "god I’m glad it’s you that’s going through this - I’d have shot myself by now! "
When I spoke to my sisterand gave her the same information - her response? “God I’m glad it’s you that’s going through this - I’d have jumped off a cliff by now!”
My response - Yea thanks for that ya pair of wimps lol
Family - who’d have 'em huh - good job I know they love me really!
Anyway - will let ya know how I get on tomorrow
Margaret
x
Hi all
Well I’m a happy bunny now - saw onc today who had no notion of stopping the herceptin. She has said that in my case they are prepared to make an exception to the usual rules and will allow me to start herceptin, and will probably have a lower then 50 stopping rate. They are going to do muga scans after every 2 treatments instead of 4 to keep an eye on my LVEF - and I amost certainly won’t do the whole 17 treatments, but as long as I get some I’ll be happy.
OH came with me to the appt - and I was so glad. He’s not a talker (or a listener particularly lol) and doesn’t do stats or prognosis. But when he heard the consultant say that the benefits I stood to gain from herceptin far outweighed the risks of any heart problems becasue of my poor prognosis - I think he finally understands why I get so flaming weepy sometimes!!
So - all in all a good day - and I got a pub lunch out of it with OH too !!
Margaret x
So pleased for you Margaret - so often we fear the worst when the onc wants to see us and it isnt always doom and gloom with them. How soon will you be starting? I wish you well with it and that it turns out to be the wonder drug for you that it has for me.
love Dawn
Thanks Dawn
I will be starting at the beginning of July. Onc thinks that my LVEF will have recovered a bit more by then, and BCN wants me to give veins a bit more chance to recover after the extravasion fiasco of my last chemo (veins are still swollen and bruised!).
Thank you for your help with the websites - didn’t need my dossier of information as it turned out lol - but was useful reading anyway.
Margaret x
Hi Magz
I have my second heart scan tomorrow. My initial scan result was 71.4 or even could have been 74.1 (!!!) had those figures in anyway !
I am seeing onc on 18th June and will get result then so will let you know if mine had deteriorated. I have arranged to go to chemo ward at 8.15am to have cannula put in as radiographers took 6 tries as getting needle in last time. Wanted to crawl into corner and cry I was that frightened. Have needle phobia now. I trust chemo nurses to get the needle in.
Take care
Liz xx
I started Herceptin in January. Had 4 and then my Muga scan was 46 so I was stopped. It really is frightening when you feel you need the treatment. A repeat Muga scan was 72 so I have just had dose 5. It had to be the loading dose again because of the delay. I was told that it is possible that it was a faulty reading not my heart . I will not know until the next Muga scan after three more. We all just have to hope for the best and keep going
Take care
Mary 2
Hi Mary
Did they say why they thnk it went right down to 46 and then back up again. How long in between the scans did they leave it? One lady I know couldn’t have any more herceptin because it had gone down to below 50. I suppose all trusts are different in their protocols.
Liz xx
Hi Liz
Not told why it had fallen but the person who repeated the muga scan did say that it could have been a faulty reading. Have now had 2 of the next 4 and then a repeat muga scan will be carried out. I am keeping my fingers crossed but at least i will have had almost half whatever happens. It all just seems such a roller coaster. It is now a year since I was diagnosed and I am not yet back at work. I just have so little energy. Is anyone else in the same position.
Mary xxx