Day 3 of Chemo
Monday we spent most of the day at UCLA and Keith has been officially restarted on the trial (http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2). For those of you who are technically inclined, there is a theoretical discussion of the action and synergy between the 2 study agents at this link: http://www.nature.com/bjc/journal/v96/n6/full/6603656a.html.
The logistics are fairly simple. Keith receives an infusion once a week - in our case it will be Monday's. We go to the research center at UCLA where Keith is examined by a member of the neuro oncology team and the study drugs are called up from the pharmacy. (The drugs arrive in a brown paper packet - in cases where there is a blind trial the brown paper bag is meant to make the study agent "unidentifiable" - ours isn't a blind study so it just seems funny.) Keith is situated in a hospital room/bed and first receives an IV dose of benadryl (antihistamine in case of any allergy) - then we have a 30 minute wait - and then a 15 minute infusion of the Temsirolimus. The process could take as little as an hour - but our experience is that start to finish it is more than 2 hours. Everyone is very very nice and very professional - it is clearly a research environment and they are grateful for our participation. The second drug is a pill - he takes that each morning. They gave us a 28 day supply (in a brown paper packet) and I have a diary to fill in - time of day of administration, any side effects, etc. (No side effects so far.)
We do not have much in the way of published results of the study. Kaiser told us they have several patients who have done quite well. When pressed, "quite well" meant one went six months without a recurrence and one went nine months. In the context of brain cancer six and nine months is considered "quite well". I did hear that some preliminary numbers may be released next month. Generally these studies are abandoned if they find that no part of the population is helped - because the study is ongoing, the indication is that at least some of the population is having some success.
There is no specified timeframe to the study. Essentially you continue with the trial until you have a recurrence (a new tumor) or you "progress" (expansion of existing tumor) and you choose to drop out and pursue other options. There were other studies offered that I briefly looked at - but at the moment there is not too much out there. Many of the current studies involve avastin or avastin-like agents. Because the latest information suggests that avastin has the potential to create other insurmountable problems in the long run, the experts are a bit stumped - and there are not so many options for experimental treatment.
Because we are in the study, we are not able to do radiation. In the ideal, we might want to do both - but that is simply the drawback of being part of a research protocol. Since the radiation is only able to target a very specific area (the visible tumor) and we know that this cancer typically hides unseen elsewhere in the brain - targeted radiation is a limited solution. We have opted for the chemo approach because it is systemic and will attack both the visible and invisible cancer cells. Not an easy decision - and frankly timing was part of mix. Radiation would not be ready for us until next Wednesday - the chemo was ready last Monday. Speed to treatment was a real consideration in our situation so by some measure of default, the study won out.
I can't express how relieved we are to be on the attack. Cancer teaches us that we cannot control everything - but that humbling lesson doesn't mean that we shouldn't/can't muster all that we can to try to beat this thing into submission!
The logistics are fairly simple. Keith receives an infusion once a week - in our case it will be Monday's. We go to the research center at UCLA where Keith is examined by a member of the neuro oncology team and the study drugs are called up from the pharmacy. (The drugs arrive in a brown paper packet - in cases where there is a blind trial the brown paper bag is meant to make the study agent "unidentifiable" - ours isn't a blind study so it just seems funny.) Keith is situated in a hospital room/bed and first receives an IV dose of benadryl (antihistamine in case of any allergy) - then we have a 30 minute wait - and then a 15 minute infusion of the Temsirolimus. The process could take as little as an hour - but our experience is that start to finish it is more than 2 hours. Everyone is very very nice and very professional - it is clearly a research environment and they are grateful for our participation. The second drug is a pill - he takes that each morning. They gave us a 28 day supply (in a brown paper packet) and I have a diary to fill in - time of day of administration, any side effects, etc. (No side effects so far.)
We do not have much in the way of published results of the study. Kaiser told us they have several patients who have done quite well. When pressed, "quite well" meant one went six months without a recurrence and one went nine months. In the context of brain cancer six and nine months is considered "quite well". I did hear that some preliminary numbers may be released next month. Generally these studies are abandoned if they find that no part of the population is helped - because the study is ongoing, the indication is that at least some of the population is having some success.
There is no specified timeframe to the study. Essentially you continue with the trial until you have a recurrence (a new tumor) or you "progress" (expansion of existing tumor) and you choose to drop out and pursue other options. There were other studies offered that I briefly looked at - but at the moment there is not too much out there. Many of the current studies involve avastin or avastin-like agents. Because the latest information suggests that avastin has the potential to create other insurmountable problems in the long run, the experts are a bit stumped - and there are not so many options for experimental treatment.
Because we are in the study, we are not able to do radiation. In the ideal, we might want to do both - but that is simply the drawback of being part of a research protocol. Since the radiation is only able to target a very specific area (the visible tumor) and we know that this cancer typically hides unseen elsewhere in the brain - targeted radiation is a limited solution. We have opted for the chemo approach because it is systemic and will attack both the visible and invisible cancer cells. Not an easy decision - and frankly timing was part of mix. Radiation would not be ready for us until next Wednesday - the chemo was ready last Monday. Speed to treatment was a real consideration in our situation so by some measure of default, the study won out.
I can't express how relieved we are to be on the attack. Cancer teaches us that we cannot control everything - but that humbling lesson doesn't mean that we shouldn't/can't muster all that we can to try to beat this thing into submission!

3 Comments:
Keith and Kathy,
I'm just coming up to speed - I hadn't seen the blog, and I'm stunned by how suddenly things have changed. That is the nature of the beast, I guess. But, on the positive side, it is equally impressive how quickly you two have been able to mobilize to fight this thing.
I wish I were closer and able to visit. My thoughts and prayers are with you, Keith.
-Jen and Leo and Lucas
Keith and kathy,
Sorry I didn't make it over this week. I hope tomorrow's treatment goes well and doesn't wear you out more. I'll try to make it over this week. MIss you - hugs and kisses!
Karin
Keith and Kathy,
we are thinking of you all the time, and wish we were closer so to come and see you. You have all our love hugs and kisses
Natasha and Yiorgos
Post a Comment
<< Home