[Lani]

her met wasn't bigger and was subsequently shrunk by the reduced dose she did finally get.

Perhaps the best you can do is ask for a repeat scan to see if the tumor is continuing to grow or continuing to shrink (don't know how long it takes the drug to have its maximal effect), with a request to receive additional drug if there is not progressive enlargement

How to time that scan would be the question. Perhaps an onc who has had several patients on the trial could give their opinion.

In light of the serious opthalmologic side effects Caryn has had, I think they
want to be sure they don't seriously impact her quality of life (ie, visual dysfunction) and probably

There is such a thing in general as "compassionate use" allowance, but I doubt for such a new and unproven medication

It is sad to say but they are probably shying away from continuing Caryn as visual disturbance is something which might preclude FDA approval in the future--these drugs are considered something which prolongs life rather than cures, thus significant side effects showing up in the small early trials can be enough to incline the FDA not to approve the drug.

Nasty business, this. In the best of all possible worlds, it would be the patient who got to decide what risks they would and wouldn't agree to take.

My best wishes that you resolve this --I think there are some interesting trials eg. agamma secretase inhibitor against cancer stem cells, as well as trials of a heat shock protein inhibitor ,and perhaps a trial trying to combine Pertuzumab, herceptin and perhaps Iressa (not sure about the last), to look into proactively while you wait for things to sort themselves out