Micro Bone Mets-Treatment?

[chrislmelb]

Hi girls, i probably have multiple bone mets which are on a bone scan but not Xrays. They are in multiple places but obvisiouly still very small. I am just wondering what the current course of treatment tends to be 'over there'? I am thinking they will probably just change my AI and add Zometa. Just wondering if they will throw Herceptin into the mix as well?
Any information appreciated.

[Mandamoo]

Hi Chris
Sorry to hear that you may have bone mets. I think we met at a forum earlier this year.

I thought with denosumab's approval you might be put on that straight away? I have just been diagnosed with osteoporosis and my onc was even talking about denosumab for that.

Do you think your Onc will restart herceptin? It seems most if not all of us at Stage 4 have either herceptin or tykerb included in our regime regardless of hormone status.

I hope you are doing ok - I am sure you will get some more responses from the girls who know heaps more than me.
Sending you love,
Amanda

[Lani]

In the best of all possible worlds, a bone marrow or bone biopsy might be standard of care to determine if what is lighting up on the bone scan (which could be tumor, microfractures or infection) is indeed tumor and whether it is or isn't her2+. Not all her2+ tumors metastasize as her2+, although the vast majority do.

I would be nice if you had a clinical trial in your neck of the woods in which they were trying to biopsy these lesions. You did not say where they were--some areas of bone are weightbearing so if a larger biopsy of bone were performed you might have to be on crutches afterwards (Never for a bone marrow test).

I have no knowledge of it being state of the art here EXCEPT at every conference I go to they say that clinicians should try to biopsy every metastasis to determine its ER,PR and her2 status and be sure it hasn't changed. Don't know if that changes government pollcies and how much leeway your treating doctors might have

Sorry to ramble--am not sure I have contributed much helpful but you can quote me as one who attends the AACR, ASCO and San Antonio meetings yearsly as well as ASCO breast and AACR breast when they occur as having heard the underlined voiced emphatically at every meeting.

[tricia keegan]

Hi Chris, my friend had bone mets and was given herceptin and also switched to Faslodex and zometa which she had a great response to, at that time she had some bone pain so rads took care of that but the mets were obviously more advanced than yours, good luck!

[chrislmelb]

Thanks girls, keep it coming. Lani the mets are lumbar, thoracic, ribs and maybe spot on skull. I will push for a biopsy.

[Mandamoo]

Chris - I have just found out about a Breacan talk on the 10th May by Richard de Boer in the latest in Bone treatment and prevention in BC. It is booked out but it has been suggested to me that if you turn up on the day you will not be turned away. I am thinking of going. I thought you might me interested.
A x

[chrislmelb]

Thanks Amanda, it must be listed in their advanced section cos i can't find it on 'normal' one. They know me at Breacan and i will sit on the floor!!

[KakaCathFreeSpirit]

Hi christine, holly-crap Im so sorry to hear where you are right now, but your onto it early so thats good, when did you find out ? the Rick De Boer BreaCan talk will be good, he is also head Onc with the Trial Im on and been pestering the RMH research nurse to see him, got the bone/mineral clinic tomorrow, any chance your in the same fascinity as well ?. I logged on today by coincidence looking for some updates on TDM-1, take care darl xo

[chrislmelb]

Hi Catherine, i have emailed you. I am at RMH Thursday 11.30.

[chrislmelb]

Amanda i have emailed you too.

[chrislmelb]

My mets were confirmed and i have multiple mets all around torso. I have been put on Herceptin, Zometa and back to Tamoxifen, together with lots of pain meds. Lani i read your statement re biopsy but my onc said it was too hard to pin point to get a correct sample.
Thanks for your help.

[Pamelamary]

Hi Chris,
Were you at Rick de Boer's talk? He organised a bone biopsy for me when I saw him for a second opinion and was very convincing about their value. However I am aware that it can be hard to do when your lesions are very small or in awkward positions. I am at Peter Mac and currently on T-DM1 and Zometa, (and perhaps Pertuzamab)
Best wishes to you..... Pam

[Mandamoo]

Good Info Pamela
Chris and I were both at Ric DeBoer's talk - did you go too? I found it very useful to understand the current treatments. I feel more equipped now to go see an endocrinologist about my osteoporosis.

[Pamelamary]

Hi Amanda,
Yes, I was - funny isn't it? Actually I am a volunteer at Breacan, though not "working" just now. Also found it helpful, as many of their sessions can be.
Regards.... Pam