WBR done- multiple brain recurrance - now what? - Joe may need help here

[Shahyan]

Hello,

Ive been a once in a while wanderer to this website for about 2 years (Pre-new registration requirements) now. About six months ago, my mom who had been undergoing treatment for liver mets for about a year, had painful headaches and vision loss. She went through a brain scan which showed that her whole brain had multiple lesions throughout (too many to count). She underwent WBR and for the past 4 months has been on Temodar. 2 months ago as a followup the brain showed 2 to 3 minor lesions (which the onc said were dead cells). However, today on her 2nd followup the scans revealed once again many mets throughout the brain. Im so down I cant think straight, and Im pretty sure there are no more options (cant do WBR again and no other chemo passes the blood brain barrier). The Onc recommended Gemzar with Herceptin (Does this combo pass the blood brain barrier?).. Here in Pakistan, we do not have access to Lapatinib either...We wrote to GSK only to be declined...Is there anything that can be done to get this drug, esp since her onc recommends it. Joe is there anyone we can appeal to?
Any recommendations would really help.........pls help

Shahyan

[Becky]

I don't know about Gemzar but Xeloda has some ability to pass the blood brain barrier and can work synergistically with Temodar.


Others on this board may have additional advice.

My best to you and your mother

Becky

[Joe]

I emailed your post to our contact at GSK and will forward you their answer when we receive it. Meanwhile here is the latest list of centers offering Tykerb for brain mets:
http://www.clinicaltrials.gov/ct/sho...263588?order=3



Regards
Joe

[Shahyan]

Thank you Joe and Becky for your response. I am going to ask the oncologist about Xeloda. Anyone else out there, please feel free to respond..Im a little worried that because much can not be done, I am not getting any advice. Pls share similar experience with me..and successful treatment..

Joe as for the link, would you know if a women from Pakistan who is canadian can access US led trials (as posted in the link)?

Thanks

Shahyan

[hannah]

Hi
my sister has had WBR +gamma knife then taxotere after all this scan showed approx 8 mets grown. Last December commenced on xeloda scanned in august and brain mets shrunk.
hope this helps
hannah

[Cathya]

Shahyan;

I am so sorry to hear of your mothers condition. I'm certain your mother, if she meets the criteria, could get into a clinical trial in the US. The problem would be actually being there for the treatments I suspect. Would she be able to travel and stay in the US for a period of time while the trial is going on. Perhaps there are other/closer similar clinical trials?

Cathy

[pattyz]

Shahyan,

did you also post on the bcmets.org site as "Hina"?? I just replied to you there, if so.

Here is what I wrote:



Hina, If your mom is on Temodar now for her recurrant brain mets, adding
Xeloda to her schedule may help. It has for me for a year now, with my
third recurrance of brain mets.


WBR is normally done just one time. More radiation to brain carries high
risk for permanant damage. I have not had WBR, refusing it for past four
years of brain mets. However, I have reached my maximum amount of
radiation to brain by having five seperate focalized radiation
treatments during that time. Three treatments were like the Gamma Knife,
two were CyberKnife.


There has been several small studies showing response of breast cancer
brain mets to the combination of Temodar/Xeloda. The response rates are
not high, and yet one never knows WHO will respond until you try. I have
been lucky to be a responder. Perhaps your mom would be, too. There is
also some incidental evidence of response from Xeloda alone.
Hope this can be of some help to you and your mom,
best wishes,
pattyz

[Shahyan]

Hina is my sister...as you can see this has really taken my entire family on this one big battle...Unfortunately the Oncologist says that since we tried Temodar and it did not seem to have any effect (in three months the mets came back and spread all over the brain)..she has dropped the idea of Temodar all together...at the moment my mother is on Gemzar+Carboplatin+Herceptin...any idea about how effective is Gemzar? Ive heard many people mentioned Xeloda but none mentioning Gemzar...I did ready however that its mlecular size is smaller the Xeloda but more than Temodar...maybe it is more effective in crossing the bbb? Let me know...and once again thanks for answering....it really helps

Shahyan

[pattyz]

Dear Shahyan,
I have read of a study that used Gemzar as one of the approaches to treat brain mets from bc. I don't know the results however. Yet, because of the small molecular weight, there is a chance your mom could experience a response in her brain. I hope this is exactly what happens.

Has she ever had/responded to Xeloda? How has she responded to other chemos? If her response has been fairly good on others, she could indeed have a positive response to her current schedule.

Holding good thoughts for you and your mom and family,

pattyz

[Shahyan]

Thanks Patty,


Mom has had some success in the past with Chemo. Pls pray.

Thanks

Shahyan