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January 23, 2014 at 5:52 pm #21761zephyr66Participant
Hi all… Looks like Amy has to get off the BRAF/MEK trial she is on at UCLA due to really bad kidney levels. Dr. Ribas said there were two more BRAF trials she would probably qualify for at UCLA and emailed me the names of the trials but gave us no info on them. Can anyone tell me what these are and if they know anything about their efficacy, side effects, etc? Thank you!
CSF1R inhibitor PLX3397 and AKT inhibitor GSK795January 27, 2014 at 11:55 pm #63402Catherine PooleKeymaster
The first one the PLX3397 looks more appropriate for AML, but there is a trial combined with zelboraf which Dr. Ribas has at UCLA. I don’t understand how it works exactly and it is early in trial. The second one you mention you can find out about here: http://meetinglibrary.asco.org/content/80659-102. I couldn’t find a trial for it. It is mixed with a Mek inhibitor. Sorry, but not much out there on either.January 28, 2014 at 1:55 am #63403zephyr66Participant thank you catherine. the doctor from uc irvine should be calling me tomorrow to clear up the confusion about the pdl1 trial. and, we’ll ask the doc (ribas is gone so we see chemlowsky) at ucla what he thinks about trials they have open. amy is complaining about her left leg more – more pain and more “jerks” from nerve stuff. she just thinks it’s neuropathy but she is sad the pain is increasing. i hate not telling her what i know. but, i just want her to enjoy the time with her mom. there is nothing that can be done and i want the docs to go over the report with her. i feel it would be selfish to say anything before that. i’ll tell her i have known after they speak with her and review report. in the meantime, i have come down hard with the flu as of yesterday. i haven’t had the flu in 26 years. i know it’s stress. with the spinal tumor, there is such a damned urgency as the pain and damage happen so fast. and, with probably liver mets, that’s even worse. i am so sad pd1 is not approved. doing my best. stayed home today from the flu and made a lot of progress talking to nurses/intake reps at uc irvine so maybe it was supposed to happen this way.January 28, 2014 at 1:20 pm #63404Catherine PooleKeymaster We’re all thinking of you. Yes, stress can lower your immunity for things, know it well. Radiation may help alleviate Amy’s pain. I would work on palliation as well as trials. Make sure it is PDL not PD1. As far as I know the only PD1 trials open are the IPI naive (never had IPI) PDL and PD1 as you can see are closely related in their work in the body. We used to think (and possibly it is true) that PDL in fact was better than PD1. But the pharma put PDL on the back burner. Take good care and let us know what is happening.January 28, 2014 at 8:11 pm #63405jamesaParticipant Hi Sylvia,
I do hope the doctor from UCI calls you so that you can review Amy’s background, as well as, the qualifications to get into this trial.
I would make sure to mention to the doctor that as you as stated in your previous post “Amy has to get off the BRAF/MEK trial she is on at UCLA due to really bad kidney levels. One of the criteria mentioned regarding this clinical trial is “Adequate organ and marrow function”. Giving the doctor Amy’s kidney levels might help determine if Amy’s kidney levels are adequate.
I think that you are doing the smart thing to talk to the doctor before you pay $800. for a visit. Hope you feel better.
Good Luck and please keep us posted.
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