Waiting for logistics to be settled...
After a quiet weekend in the hospital, Keith and I met with the UCLA team on Monday of this week. They reviewed our MRI's and briefed us on the phase 2 trial which was recommended to us.
The trial really consists of 2 parts. Part 1 focuses on the penetration of the chemo agents into the tumor. During the first 5 days prior to surgery Keith will take the orally administered agent Tarceva. On the 5th day he will add Temsirolimus which must be administered at UCLA by drip. The protocol requires that surgery then take place within 3-24 hours of the drip. The research team will recover part of Keith's resected tumor with the objective of assessing how much of the chemo agents have penetrated the tumor in the five days and what genetic or other effects can be documented. Two weeks after the surgery, Keith will restart use the chemo agents - exactly as in the first week - and will continue as long as they are effective. The examination of the tumor material will take place well after the surgery, so as the team explained to us, whatever is learned there will not specifically benefit us in our current situation. The immediate benefit to us is access to the chemotherapy which would otherwise be unavailable. (For more on the trial, link to the profile at http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2)
We had hoped to begin the therapy as early as last Tuesday, but we learned that there is a requirement within the trial that we be 28 days away from our last Temodar treatment. That places our earliest start date at this Friday and the soonest we could then do surgery would be Wednesday or Thursday next week. We were clearly disappointed at any delay as there is clear risk in waiting for the surgery. We spent Monday night and Tuesday agonizing our decision - or rather reagonizing it. We were already feeling stressed by the length of time to surgery - now a few more days will be needed.
The best alternative to the trial is to do the surgery ASAP and begin treatment with Avastin (3-4 weeks post surgery). Avastin is a monoclonal antibody which chokes off the blood supply which supports the tumor. (Tumors send out signals to create new blood vessels - without a blood supply the tumor cannot grow or thrive.) Avastin both alone and in combination with chemo agents has been effective for many GBM patients - but it too eventually "runs its course". Additionally, we are just learning that it may change the structure of the vascular system which has some long term downsides - mainly that it may be harder to get chemo into a subsequent tumor.
In the end, we decided to stay put and to go for the trial. Our reasoning is that this tumor is operable - whether or not the experimental chemo works, that buys us a bit of time. If Keith were to get another tumor, and it were inoperable, the best tool we would have is Avastin. From a strategic point of view, I want to save the Avastin tool in case we find ourselves in a situation where it is our only tool.
We are now in the process of getting approved/accepted for the trial. This is not just a formality - they study team needs to confirm that Keith does not have unique circumstances which would distort the results. The logistics are also complicated. As of this morning nothing is settled, but the tentative schedule looks like he will be able to start chemo on Saturday with surgery the following Thursday.
Keith is now home and resting in his own bed. He has had many visitors which is greatly comforting. He is sleeping a great deal (antiseizure meds are back in the picture) but he does not have headache or nausea which means the steroids are doing the trick for now. Any whiff of an issue and we will be back in the hospital...
The trial really consists of 2 parts. Part 1 focuses on the penetration of the chemo agents into the tumor. During the first 5 days prior to surgery Keith will take the orally administered agent Tarceva. On the 5th day he will add Temsirolimus which must be administered at UCLA by drip. The protocol requires that surgery then take place within 3-24 hours of the drip. The research team will recover part of Keith's resected tumor with the objective of assessing how much of the chemo agents have penetrated the tumor in the five days and what genetic or other effects can be documented. Two weeks after the surgery, Keith will restart use the chemo agents - exactly as in the first week - and will continue as long as they are effective. The examination of the tumor material will take place well after the surgery, so as the team explained to us, whatever is learned there will not specifically benefit us in our current situation. The immediate benefit to us is access to the chemotherapy which would otherwise be unavailable. (For more on the trial, link to the profile at http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2)
We had hoped to begin the therapy as early as last Tuesday, but we learned that there is a requirement within the trial that we be 28 days away from our last Temodar treatment. That places our earliest start date at this Friday and the soonest we could then do surgery would be Wednesday or Thursday next week. We were clearly disappointed at any delay as there is clear risk in waiting for the surgery. We spent Monday night and Tuesday agonizing our decision - or rather reagonizing it. We were already feeling stressed by the length of time to surgery - now a few more days will be needed.
The best alternative to the trial is to do the surgery ASAP and begin treatment with Avastin (3-4 weeks post surgery). Avastin is a monoclonal antibody which chokes off the blood supply which supports the tumor. (Tumors send out signals to create new blood vessels - without a blood supply the tumor cannot grow or thrive.) Avastin both alone and in combination with chemo agents has been effective for many GBM patients - but it too eventually "runs its course". Additionally, we are just learning that it may change the structure of the vascular system which has some long term downsides - mainly that it may be harder to get chemo into a subsequent tumor.
In the end, we decided to stay put and to go for the trial. Our reasoning is that this tumor is operable - whether or not the experimental chemo works, that buys us a bit of time. If Keith were to get another tumor, and it were inoperable, the best tool we would have is Avastin. From a strategic point of view, I want to save the Avastin tool in case we find ourselves in a situation where it is our only tool.
We are now in the process of getting approved/accepted for the trial. This is not just a formality - they study team needs to confirm that Keith does not have unique circumstances which would distort the results. The logistics are also complicated. As of this morning nothing is settled, but the tentative schedule looks like he will be able to start chemo on Saturday with surgery the following Thursday.
Keith is now home and resting in his own bed. He has had many visitors which is greatly comforting. He is sleeping a great deal (antiseizure meds are back in the picture) but he does not have headache or nausea which means the steroids are doing the trick for now. Any whiff of an issue and we will be back in the hospital...
posted by Keith and Kathy | 9:39 AM
0 Comments:
Post a Comment
<< Home