Hiya, forgive me for intruding but I am trying to condition myself into accepting that I may need a year of herceptin myself and I have been reading your posts with interest - I knew that there was a risk to the heart with herceptin but I wasn’t aware until now that I would have to have a MUGA scan to keep an eye on my heart if I had to have it (or indeed know what a MUGA scan was in the first place).
I know we all come on the site for support and advice but I do sometimes feel as if I take more than I give and although there may come a time when I will feel able to provide the support that I am obviously getting from this site myself I just wanted to thank you all for having this conversation publicly so that I, and others like me, could benefit from your experience.
All the best, Naz
Hi Naz
I have just had my 5th Herceptin and to be honest it’s fine. You get a runny nose and I have found my eyes water and are sticky in a morning.
I had my 2nd MUGA scan a couple of weeks ago. My first reading was 71 which was excellent so that doctor said. My second reading was 69 so up to now the Herceptin has had no effect on my heart. The herceptin takes about 40 minutes to have but the first time you go you have to stay for 6 hours afterwards just in case there is a reaction.
I know it has to go on for a year but it’s another back up of not letting the cancer come back.
When will you need to start it?
Lots of love
Liz xx
Hi Naz
I read your other posts about the need to have herceptin, and I know that you are uncertain, or worried, about this.
As you will have seen from my posts, I am the opposite lol - because of my prognosis, I was/am desperate to be given the opportunity to have the herceptin. I think this was why I haven’t replied to your other posts - because I couldn’t undestand why you wouldn’t want it - and wasn’t sure what to say lol.
If I have read your posts correctly (and I haven’t been back and checked sorry) one of your concerns was about the continued hospital visits - if I manage to get beyond the first 2 herceptins (fingers crossed!!) - the rest of my treatments will be given at home, not at hospital. Don’t know if this is an option you could consider ?
Not even sure I’ll start at the beginning of July now - my arm where the extravasion happened with my last chemo is getting worse instead of better and has been for about a week now. I rang BCN who said that is was all just a side effect of the chemo in general and not as a result of the extravasion - yea right, the whole area where the chemo leaked (on right side of wrist) is sore, still bruised, is now swelling and the swelling is moving under my wrist, and I now have restricted movement in that wrist - and I’m well pee’d off. The BCN said to me a week after the extravasion ‘oh we’ve made a mess of that wrist haven’t we’ - then quickly corrected herself and insisted that they had given me all appropriate treatment at the time. I know from the chemo nurse who administered it that they were worried I was going to complain - well they should start worrying more now lol.
I’m off to my GP tomorrow to get his opinion - and hopefully some pain relief.
To cap it all I’ve had a bad back for the last week - I’ve never had a bad back in my life so naturally I’m thinking all sorts. Have already seen doc who said I’d pulled something and not be thinking all sorts of ‘silly things’. She then said painkillers should sort it but if it hasn’t gone by next week we’ll maybe do some tests - if anything it’s worse, pain in lower back and in right shoulder - so that’ll be on the agenda too!
Anyway - enough of me moaning and moving away from the subject lol - I hope you get the results you want from the FISH test Naz - good luck with it and well done Lizzie on keeping your heart steady - hope mine does the same when the time comes!
margaret
Magz - sounds like they have made a mess of your wrist and not accepting it is their fault. It sounds awful and not just a side effect of the chemo. I hope your GP sorts it out for your tomorrow. Surely the chemo ward should be more involved.
When do you start your Herceptin? and then do you get 2 and will they check your heart again then?
I think we are all like that with any pain we have and we think we shouldn’t other anybody about it and then if you don’t and it turns out to be something we’ll never forgive ourselves. I was just told by the BCN that if I have a pain that doesn’t go away and last more than 2 weeks to let them know and they will scan me or whatever. when I saw the onc yesterday (registrar) I said that I had had a dull pain in the pubic area of a few weeks and that my bowels were very loose. She said well its not likely to be anything and stop having any fibre and you could try Fybogel !! Now that put my mind at ease !!! the dull pain is like when a period starts but I haven’t had a period for nearly 2 years.
I hope your GP can sort your wrist out for you. Keep us informed.
Love Liz (B!!)
xxx
Cheers Liz lol
I have to go in next Tuesday to see BCN to sort out start of herceptin - hopefully it will be the following week - my daughter gets married on 26th July and I want the first 2 out of the way before that!
My onc has said that given my low heart scan, they will do a muga every 2 treatments instead of every 4. I am going up to Fort William on holiday on 2nd August so I’d like to get the 2nd Herceptin done, and the scan done and results back before I go away - otherwise (knowing me lol) I’m going to go on holiday assuming I’m about to drop down with a heart attack lol!
Margaret
xx
Now don’t be silly !!! that’s when you get up Ben Nevis and the hunky rescue men can come and get you !!
The herceptin before last one I had a nurse off the chemo ward who was retraining on the outpatients ward and she put the tournaquet on me to get the vein on my hand up then put the needle in (god that hurts these days cos of veins like concrete) and continued to put the saline in WITHOUT take the tournaquet off !!! glad she realised before trying to put the Herceptin in. I had a swelling on the back of my hand for a few days and was really bruised. I hadn’t noticed either but then I am not a trained nurse. Saying that they are all lovely nurses up there. Nice and caring. and you may remember that they put my cannula in for my heart scan cos it took the radiographers 6 times to get it in on first scane (excuse me - just having hot flush !!!).
Trust you got your wedding outfit all sorted? What colour ?
Liz xxx
hmmmmm - I’ve had my outfit sorted ermmm 3 times - first it was gold, then it was rose pink - and now it’s lilac lol - and it’s staying lilac - cos quite frankly I can’t afford to pick another outfit lol!
Margaret x
I bet you look lovely missus ! Suit? Dress? Dress and jacket? I want a pic of you and the lovely bride ! Hope the sun shines xx
My 2 say that if and when they get married they are going to just go and do it !! They haven’t got boyfriends yet. I live in hope of somebody taking them off my hands!!
Off to bed now. Nite xx
Nite hun - dresss & jacket (oh and big hat to hide the bald head lol - will mail ya piccies I promise!
xxx
Ha ! bald head ??? Nite x
Aye - one month post chemo and no sign of any hair yet. Damn stuff grew back when I had rads in middle of chemo’s - now cos I want it back for wedding it appears to have gone into hiding lol
Nite nite xx
oooh I’ve just checked mirror - I have fluff now wooohoooooo