Through the weekend we felt lost and scared, floundering without any clear answers of what direction to take. I kept praying and I knew that my Heavenly Father would direct our path just as he has always done, but I am an inpatient person!! :)
During all of this time I have been researching clinical trials and there is an immune therapy trial going on right now that is showing some pretty good success with many different types of cancers, including colon cancer. There is woman on the Colon Club, my online support forum, that has been on this drug, called anti PD-L1, for 5 months now and she has had little side effects and has had some positive response.
This anti PD-L1 drug trial has 3 arms to it: one with just the drug alone, another with the drug and one chemo drug, and then another with the drug and 3 chemo drugs. This drug trial is at many centers throughout the US, but nearest to us is the first arm here in AZ and the other two are being done in CO. I called about all three but found that the one is AZ was not taking any more colon cancer patients. The two others in CO told me that only one option was open right now which was with the anti PD-L1 and three chemo drugs "Folfox."
One of Matt's options is to go back on Folfox which was his original chemo cocktail and it worked well for him for a year before his lung tumors started to progress. So this trial makes sense, but the kicker is that Matt has had to have been off Folfox for a year before entering the trial. March will be the year mark......
So this leads us up to our appointment with the oncologist on Monday of this week. He told Matt that he thought he should try Folfox again. We explained about the immune therapy clinical trial and he agreed that the anti PD-L1 was having some success and Matt should wait. We discussed what Matt should do in the meantime and he talked Matt into the new chemo drug called Stivarga that has many many side effects and doesn't add any significant survival time. I was unhappy with the choice but respected Matt's opinion as he was the one who would have to go through the side effects.
When we walked out of the doctors office I got a call from the research center here in AZ and she gave us great news! I think because I had called her numerous times she felt sorry for us and she pushed it with the drug maker and they said they would squeeze Matt onto the anti PD-L1 trial if the tumor testing that must be done shows that he has the right protein. We meet with them this Friday and hopefully there is still some tumor sample available from when CTCA (the cancer center) did a liver biopsy on Matt over a year ago.
After this phone call we went to discuss the side effects and protocol of Stivarga, the chemo that Matt had told the doc he would take, with the education nurse. I don't know if it was because she was wearing scrubs and had an RN on her name tag, but when she went over the side effects Matt got very serious and said that he didn't think he could handle them and that quality of life was just too important right now. I OF COURSE AGREE!! We all had a good cry and she told us that Matt looked really good right now and that we should just get out of there and go somewhere fun! Again....I COULDN"T AGREE MORE!! :)
Matt has been off of chemo now for almost five weeks and he is feeling stronger and better every day. We should find out in about two weeks if Matt will be eligible for the anti PD-L1 trial so it looks like he will have a very nice and long chemo break which he really needs right now....as well as the rest of the family!! LOL!
I'm so glad to hear Matt is feeling better and you feel like you have a path to go down. Hope everything works out for you. As always we will keep you in our prayers! You both are such great examples of keeping faith through tough trials!
ReplyDeleteLove, Patrice