Thanks Nicky and Helen for making me feel so much better! As we know it is so complicated that sometimes there just aren't answers like why does tumour in one vertebrae grow and not in another?!!! I have just looked back at my reports and it does talk about sclerosing of the bones which I didn't know it meant hardening so that's given me some encouragement so thankyou for pointing that out and taking the time to respond.
Hi NewYork That is indeed great news 🙂 However I do know how you feel about your bones. In my understanding of the disease the bones will always show as having been affected by metastases and they do not show as 'NED' as can happen with soft tissue involvement. I have been told that my bones are sclerosing (sp?) which in other diseases would sound very bad but in bone mets means they are hardening and therefore strengthening. From what I understand of your treatment regime you will continue on Perjeta and Herceptin after the Taxol has finished and this should keep you stable so I would hope that the pain wouldn't come back necessarily, only if you failed to respond to the continued treatment. From what you've said though it sounds like you will respond. Although my circumstances are different when my bone mets were found in 2008 I also had a local recurrence. I had FEC chemo and that shrunk the lump, as well as halting the spread of the bone mets. Although my bone mets have since progressed, mainly I suspect from my receptor status change from HER- to HER+, my breast recurrence does not show up on any scans and has not come back. I think once we leave the relative 'safety' of chemotherapy we have all sorts of worries and anguish about the follow on treatment which is only natural. I hope once you gain more strength (and hair!) you can put some of these worries behind you and enjoy the fact that you are now in less pain and with less of a tumour burden on your body that when you were diagnosed. I hope that makes sense and is how I view my current status with secondary BC. Nicky x
Hi,new york,that's fantastic news,soooooo pleased. The thickening in the bones may be them healing as this shows up on scans. So you may have shrinkage and the bones are rebuilding. You are allowed to be fed up so please don't beat yourself up. The road we travel is full of potholes so we are allowed to have fed up days. Sending you huge hugs and sooooo pleased about your news,Helen xxxxxxx
I have bone mets er and her2 positive. My bone mets have been steadily growing since diagnosed couple of years ago and last nov it started to affect the nerve coming out the neck affecting my right arm and I was in so much pain it was just unbearable.
Anyhow last nov I started weekly taxol and perjeta and carried on with herceptin. Most of the pain in the arm went the day after starting and my breast lump which was quite sizeable shrunk to nothing within 2 weeks. I was so happy that the treatment was working and it has motivated me through the chemo so far.
Yesterday I got my scan results which confirm the breast lump completely gone and the bones stable and unchanged. I realise I should be happy that the chemo has halted the growth but I really was expecting things to have shrunk in the bone based on the pain going so quickly, My concern is that I will finish amost 6 months of chemo to then stop and then it grows again and the pain returns and I'm back where I started!!!! But with no hair and feeling v toxic!!!!
When I asked if there had been any shrinkage he said that despite the reports showing stability that it is difficult to tell as the cells mix so much together but the bones are showing signs of thickening. I realise everybody responds differently but I just wondered if anybody had any knowledge about bone mets and how they respond to treatment? Are my expectations too high in hoping for shrinkage?
Any advice wld be appreciated I'm normally very upbeat about things but today I'm just so fed up!!!!!! xx