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Kadcyla

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Re: Kadcyla

Hi Nicky thank you for your kind reply, I phoned cardiology nurse last week she said there's a very long waiting list for the heart scan but said if she could speed it up..But said she's not got a lot of clout..the hospital I attend is a general hospital on the Scottish border with a Macmillan treatment centre but all oncolgy is based in the Edinburgh western so.it's clinics for most things..so there's always long periods of waiting time..All this drains you trying to get scans , appointment etc..My apologies again for the long post.. My head is mince on these pain killers i.am on for the pelvic lesion.. Hope things are going ok for you. Feel i.am talking only about myself here..

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Community Champion

Re: Kadcyla

Hi

It's always a worry when you have a scan and don't hear back when you expect to. Also if you're off treatment for any period of time.  As it seems to be heart related problems that you stopped having kadcyla for I was wondering if you'd had another echocardiogram since to show if it has recovered enough to either restart it or have herceptin with or without pertuzamab? 9i don't know if either is possible if you've already had kadcyla but just wondering)

Also if you have continuing issues with your heart function there is an nhs cardio-oncology unit at The Brompton hospital in London and I think some others have been set up elsewhere in the country.  It is worth getting a referral to them as they deal with, and were set up for, precisely this reason. A consolidated service is needed for the cardiology element and the oncology element, which unfortunately most hospitals don't do.  I have been seen there for the last 6 years and remain on their books although only go once a year now for a checkup.  All my medications etc are covered by a usual prescription but I did have to use them for a procedure done 6 years ago to correct my underlying heart problem.  After a bad experience locally I don't let anyone else deal with my cardio issues!

Nicky x

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Kadcyla

Hi just wondering if anyone.going through similar.. Was on kadcyla until August it was successfully controlling lung mets and breast. Last 3 scans showed no growth. They took me off treatment due to low heart function..was very concerned that i have not been on treatment. I have had a sore hip and had x-ray that was clear.. Then had a scan and there's a lesion on my pelvis.. I keep thinking did this happen because I have not been on treatment.. Gp not sure.. I am.worried sick as they had the meeting on Friday ( at my Macmillan centre) and heard nothing back.. Keep over thinking and making myself ill..i.was so.positive until this.. I.feel.stupid and trying to.keep.a lid on all of this. Sorry for the long post..