We met with the people at UCSF about the clinical trial and a second opinion and they were great. We directly interacted with 5 people, including the world famous and wonderfully personable Dr. Tempero. And the other 10 people in the office all knew my name and where I should be going next. Even so, with all that professional brain power walking around, I remarked to Vicki that I am just as much an expert on the treatment of Pancreatic Cancer as anyone we've met so far - nothing really is the 'best treatment' and no one really knows why some things work for some people.
Amazingly enough, Kaiser has decided to not fund my participation in the UCSF trial. The wording, following 2 internal appeals, is that "there is not clinical evidence of proven efficacy with the combined therapy". At first I was good with the decision, but the more I think about the reasoning they've declared, the less satisfactory it becomes. I don't know who to break it to at Kaiser, but there is no therapy for this type of cancer that has "proven efficacy". None. So what's the deal? Is it really Money? Kaiser got me started on pursuing a trial and what greater contribution could I possibly make to finding a cure, or at least eliminating another worthless treatment? I did not get to tell anybody how I felt about it - it was a bunch of Kaiser people looking over my medical record and the clinical trial proposal, from which they turned me down. As detailed on these pages, Chemo Kaufman offered to give me a) no further treatment, b) chemo therapy, or c) chemo radiation - my choice of 3. Seems odd to give me that much of a range of choices when the major concern is proven efficacy of treatment. I am told that the Genentech drug (that Genentech supplies for 'free' during the trial) will cost about $120k over the 6 month course of the trial - how much would that suck for Kaiser if the drug actually works and becomes one of the choices they need to cover for their patients. I don't know - maybe they really are concerned about the side affects.
Now I've made an appeal to the California Department of HMO's (or something like that). And to tell the truth, I'm having second thoughts about the trial. I mean, I'm still interested in saving somebody a little turmoil over choice of treatment 5 or 10 years from now. But there really is a potential cost to the information. And now that I have a date and time for chemo to start (June 13 at noon thirty, second floor, Walnut Creek Hospital), it might be easiest to go with the flow and not have to worry about the possible side affects of the trial drug. I have had the whipple procedure, and surely Chang would spit in the face of bowel perforations or abnormal and excessive clotting or uncontrolled internal bleeding, but it would still suck for me.
Meanwhile, I continue to gain weight and energy and am up to about 20 hours of work per week. My brother Steve and my wonderful sister in law Laura came for the weekend. We toured the Napa valley in preparation for Vicki's surgery. Now we're nursing her return to vigor (she tells everyone, and especially me, that she is a far better patient than I ever was - I shall remain silent). The surgery took longer than anticipated, the gall bladder was VERY inflamed, and I think she's finally over the morphine (2 days later) that she got in the recovery room. She's still sore and moves pretty slowly. And we prepare for Taryn's 21st Birthday Bacchanal.
Amazingly enough, Kaiser has decided to not fund my participation in the UCSF trial. The wording, following 2 internal appeals, is that "there is not clinical evidence of proven efficacy with the combined therapy". At first I was good with the decision, but the more I think about the reasoning they've declared, the less satisfactory it becomes. I don't know who to break it to at Kaiser, but there is no therapy for this type of cancer that has "proven efficacy". None. So what's the deal? Is it really Money? Kaiser got me started on pursuing a trial and what greater contribution could I possibly make to finding a cure, or at least eliminating another worthless treatment? I did not get to tell anybody how I felt about it - it was a bunch of Kaiser people looking over my medical record and the clinical trial proposal, from which they turned me down. As detailed on these pages, Chemo Kaufman offered to give me a) no further treatment, b) chemo therapy, or c) chemo radiation - my choice of 3. Seems odd to give me that much of a range of choices when the major concern is proven efficacy of treatment. I am told that the Genentech drug (that Genentech supplies for 'free' during the trial) will cost about $120k over the 6 month course of the trial - how much would that suck for Kaiser if the drug actually works and becomes one of the choices they need to cover for their patients. I don't know - maybe they really are concerned about the side affects.
Now I've made an appeal to the California Department of HMO's (or something like that). And to tell the truth, I'm having second thoughts about the trial. I mean, I'm still interested in saving somebody a little turmoil over choice of treatment 5 or 10 years from now. But there really is a potential cost to the information. And now that I have a date and time for chemo to start (June 13 at noon thirty, second floor, Walnut Creek Hospital), it might be easiest to go with the flow and not have to worry about the possible side affects of the trial drug. I have had the whipple procedure, and surely Chang would spit in the face of bowel perforations or abnormal and excessive clotting or uncontrolled internal bleeding, but it would still suck for me.
Meanwhile, I continue to gain weight and energy and am up to about 20 hours of work per week. My brother Steve and my wonderful sister in law Laura came for the weekend. We toured the Napa valley in preparation for Vicki's surgery. Now we're nursing her return to vigor (she tells everyone, and especially me, that she is a far better patient than I ever was - I shall remain silent). The surgery took longer than anticipated, the gall bladder was VERY inflamed, and I think she's finally over the morphine (2 days later) that she got in the recovery room. She's still sore and moves pretty slowly. And we prepare for Taryn's 21st Birthday Bacchanal.
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