Well, I guess you all read the last post.
I did not go into great detail as a non-MOLer on myhealth update list said I
went into too much detail.
Dr. Khuri said this is the most bizarre spread
pattern he has ever seen-from left tonsil to right parapharyngeal. This
convinces him it was carried by the blood, and our treatment will be very
aggressive and systemic. Altho it is a clinical trial, Charlie does not
qualify because it is recurrent. But the same protocol has been used on
recurrents and had a 55% success rate of shrinkage (yeah, I know I preach
against statistics, but Dr. Khuri said it before we could stop him).
I blitzed through alot of messages over the months I thought
were not relevant, so bear with a redundant request: please anyone out there who
has used Taxol, Imphosphamide, or carboplatin please share anything you think
might help. I have the patient info sheets of each of the drugs, and a
detailed outline of the protocol, but I am looking for more first hand
experience.
The protocol can be found on MDA's web site by looking up
protocol DM-97-042
Thanks to you all for your prayers and the many many
emails. I will never respond to each of them tonight, but I love each and
every one of you.
Charlie told me he was more scared now than he ever was, and I
reminded him you only have fear when you are alone, and I know we are not
alone.
