new tumour while on herceptin

asahizuru · 03-12-2011, 05:01 AM

Just wondering if there is anyone with the experience I have. Dx long before herceptin was available in the UK - back in 1990, and had several recurrences which were treated with various chemos. In 2002 dx with extensive bone mets, and on herceptin since 2004 along with bisphosphonates, currently zometa. 3 years ago started to get more pain and thought it was due to increasing bone mets problems and maybe herceptin not working so well. But last year further mri scans showed it to be caused by a soft mass tumour growing alongside my lumbar spine and wrapping around the nerves exiting at L2. When this was dx I was treated with 5 sessions of rads, even though 2 years prior I had also been treated with 5 sessions rads on suspected vertebrae. It was not successful in controlling the pain either time. But a scan 3 mths after showed the tumour had not grown any more. I don't know how common this sort of growth is and what sort of treatment you would be looking for in the States (I am in UK) and would appreciated any thoughts on this. I am need a lot of meds to control the pain now.

Asahizuru

Lani · 03-12-2011, 09:09 AM

can they biopsy the new mass to be sure it is the same tumor youhad before ie, is it bc, is it her2+, is it ER+?

In the US we recently got FDA approval for denosumab for bc bone mets--not sure what your mass is since you say it is wrapping around the spine rather than of the spine (vertebrae)

Hope this helps!

hutchibk · 03-12-2011, 09:52 AM

To me it sounds as though it might be time to add another systemic chemo in with your herceptin to help knock these tumors back. Which chemos have you had?

tricia keegan · 03-12-2011, 02:21 PM

I know Denosumab is avialable here in Ireland (although my own hospital don't offer it) so it's probably available in the U.K too!

My friend had a similar tumour and was in a lot of pain, she opted for surgery in desperation which was unsuccesful so think maybe another chemo would be worth a try.