I was diagnosed yesterday with secondary bone mets in upper spine and hip.
I am currently two thirds of the way through a years Herceptin and the onc was surprised that this has happened.
Has anyone else experienced this whilst on herceptin?
Hi RosieBear
So sorry to hear about your diagnosis, I was on number 12 of my Herceptin when I reported dizzy spells to my onc, and was subsequently diagnosed with brain mets, then had a Ct scan which showed bone and liver lung mets, this all happened in june. My Onc was similar to yours and seemed surprised that this has happened, obviously not as surprised as us!!!
I know your head will be everywhere at the moment, questions reeling around about what next, because to be honest most of us don’t have plan B, Plan A was the wonder drug Herceptin.
I have just finished WBR and have started back this week on Herceptin and Taxotere, i still feel I have to keep the faith and hope that is is doing something to keep this at bay
sec diagnosis is devastating, try to keep your chin up there is so many positive stories on this site,
As you might gather I am on steroids, hence the ridiculous time to be sat on a PC
Love
KarenA
Hi rosiebear,
I hope you don’t mind me asking but how did your diagnosis of bone mets come about? Did you present with symptoms or were they found at a ‘routine’ scan.
I only ask as I think I may have them, my gp has made an urgent referral to my onc who I am seeing this week. I’ve been told I’ll prob be sent for an urgent bone and poss ct scan.
Did you have any symptoms prior to your diagnosis or did it come completely out of the blue? I have had loads of persistent pain and am showing signs of hypercalcaemia (waiting o blood results to confirm).
Apologies if you think I’m being rude,
Take care,
Kelly
-x-
Hi Karen thanks for the contact.
Hi Kelly, Yes I had symptoms - Have had a painful right leg and upper spine for two weeks,
gradually getting worse.
Went for Herceptin last Tuesday and the nurse spoke to my onc who said,
nothing to worry about whilst on herceptin !!
By Friday the pain was much worse, so phoned the onc again - went for an urgent MRI scan and there they were the little b’s.
Am seeing an ortho[paedic surgeon on Tuesday as I will need a pin in my right femur or a hip replacement as 50% of the bone has gone.
After that radio and possibly more chemo which fills me with dread.
I hate this bloody disease.
Really hope that yours is nothing serious.
Keep in touch.
Love Rosiebear.
Hi rosiebear,
thank you so much for responding to my post, I’m truly grateful. I’m sorry to hear that initially your onc brushed off your pain as being nothing sinister, but am glad you got a scan v.quickly soon after that.
I hope your appt with the ortho surgeon goes well and you get the treatment you need swiftly. I wish you well for future treatments too, particularly chemo.
Thanks for your support, take care, and I will be sure to let you know how I get on,
Kelly
-x-
Hi all , on herceptin to for spine mets , got brain mets in may lucky had operation went well ! now back after 5/6 weeks and due for full spine scan and liver scans mri on the 24 july then results the following wednesday after… heres hoping …zaf special from the wirral. is saying that drug will be available soon…i know it is tykerb.
How soon do i fight for tykerb !!! cause this goes through the brain barriern !!! i i know all as been about me!!! but i hope this helps some of you out there !! any questions ? i was told told chemo does help bone mets how true this is i dont know ???
sophie