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Lani · 11-09-2007, 11:40 AM

getting herceptin and the doubts you have on the adequacy of your treatment.

Wouldn't it be lovely if in return for informing breast cancer patients of their
IHC and gene array results (so they can relax about what treatments they did or didn't get and plan what treatments they may need in the future if their tumors have not changed dramatically since they presented), they would allow donation of portions of their tumors to a tumor bank on which to do any and all testing wished with fully consent and with full disclosure of their clinical course (how they actually did, what treatment they got etc)

I think this would speed up cancer research tremendously and many researchers I have spoken with tell me that the patient privacy laws have hindered their research tremendously!!!!

Yes, some her2+s who suffered with anthracyclines will be upset if they prove TOPOIIA negative, but think of all those her2-ER+PR+ patients who were treated with chemo when their likelihood of benefiting was far smaller. If you (Alaska Angel) ended up to be PTEN negative, you could rest assured that herceptin was unlikely to have helped in the first place.

More importantly it might give you ideas of pathways which might need to be blocked should it ever, God forbid, recur.

It is not that easy a story, as the multitude of pathways and negative and positive feedback mechanisms is overwhelming, but I have read that some oncologists hold to the theory that if you can block the three most important pathways or so early on...

This is a science in its infancy it seems. But hope (lack of regrets) keeps people going (also a hope that they might be somewhat prepared/armed with ammunition should things get worse)

Off my soapbox for now!

11-09-2007, 11:40 AM	#3
Lani Senior Member Join Date: Mar 2006 Posts: 4,778	I know you have struggled long and hard with the difficulty you had getting herceptin and the doubts you have on the adequacy of your treatment. Wouldn't it be lovely if in return for informing breast cancer patients of their IHC and gene array results (so they can relax about what treatments they did or didn't get and plan what treatments they may need in the future if their tumors have not changed dramatically since they presented), they would allow donation of portions of their tumors to a tumor bank on which to do any and all testing wished with fully consent and with full disclosure of their clinical course (how they actually did, what treatment they got etc) I think this would speed up cancer research tremendously and many researchers I have spoken with tell me that the patient privacy laws have hindered their research tremendously!!!! Yes, some her2+s who suffered with anthracyclines will be upset if they prove TOPOIIA negative, but think of all those her2-ER+PR+ patients who were treated with chemo when their likelihood of benefiting was far smaller. If you (Alaska Angel) ended up to be PTEN negative, you could rest assured that herceptin was unlikely to have helped in the first place. More importantly it might give you ideas of pathways which might need to be blocked should it ever, God forbid, recur. It is not that easy a story, as the multitude of pathways and negative and positive feedback mechanisms is overwhelming, but I have read that some oncologists hold to the theory that if you can block the three most important pathways or so early on... This is a science in its infancy it seems. But hope (lack of regrets) keeps people going (also a hope that they might be somewhat prepared/armed with ammunition should things get worse) Off my soapbox for now!