Hope you're doing alright and will have a lovely Thanksgiving! I'm getting off pretty easy this year- just taking rolls, green salad, and two pies to my mother in law's house.
I had planned on posting sooner than this about my visit to Norris Cancer Center/USC with Dr. Lenz on Monday, but I had chemo yesterday & didn't feel well, then my internet was down for much of today.
The appt went well and Dr. Lenz was very nice & spent a good hour with me explaining things, answering questions, and going over with me what I should look for and not look for in a clinical trial. It was all very helpful.
I admit that I was disappointed at first because I will not be doing the PR1724 trial (the one with the drug that targets the cancer stem cells). I was really hopeful about this or about finding another clinical trial there or somewhere. Dr. Lenz explained to me that he doesn't believe my cancer has advanced enough to really be considered disease advancement (which would be required to participate). He feels that as long as I still have another option, I should wait on doing a clinical trial. He said that he believes in this PR1724 drug and is excited about it, but said in a phase I trial that he can only give just that drug, not the drug combined with chemo which is what he said would actually be best for me. He told me what would be considered disease advancement is if my scan had showed new tumors growing in new places. He did not consider the increased PET uptake in all areas as concerning (although said it should be watched carefully) & one lung tumor growing a few millimeters when all the other many tumors had not grown meant it was considered an overall stable scan. The radiologist who wrote up my scan report worded it as "slight disease advancement". Dr. Lenz said that since his drug in this trial is not yet proven on humans, that there could be more risk to me to go off what I'm on and go onto something still not proven. If my next scan should show new tumors growing, then I should find something else & maybe his or another trial. He did say I'm now being put on a list that if a trial should come up that I meet requirements for that they would call me. Prior to this, the patient just had to keep calling and checking themselves.
When Dr. Lenz was explaining to me what I should look for in a clinical trial, he said at least at Norris Cancer Center, that I need to look only for trials that do not include any of the drugs I've already had. That's hard to find, except in phase I trials where they're just testing one new drug- there are a couple of phase II trials out there that combine new drugs w/ chemo and don't exclude the patient if they've had the chemo but most do. He talked about a clinical trial they have going there at Norris which includes a new drug and a different form of irinotecan (the main drug in Folfiri), but said that particular trial needs "irinotecan virgins", which I am not! It does make clinical trials that I can look into and be considered for much more difficult to find, but it helps me to know what to look for and not waste my time looking into trials I won't qualify for.
He talked highly of phase I trials coming out of Vanderbilt in Nashville and of those coming out of a facility (forgot the name- wrote it down though)in Scottsdale, AZ. He also thought one trial I had brought a copy of in from Bethesda, MD looked like one I should look into. Not for right now- he still thinks I should stick with what I'm on, but just to have the information and get my name on their list for future.
Monday was a long day, although I know my drive was nothing compared to what some of you do. L.A. traffic is no picnic, though. I was gone from about 11 a.m. to 5:45 pm & within 15 minutes of being home, we took off in the car again to meet relatives for a birthday dinner for Amy, my now 15 yr old. She was grumbly in the a.m. that I was leaving her on her birthday, but got over that and had a nice evening! One of her gifts this year was a request of hers- to go with a friend to get a manipure/pedicure for the first time. That is where she is right now & I've got to go pick her up from the salon in about 20 minutes.
I am doing alright and still feel like there is hope and possibilities.
Oh- I also discussed the cyberknife and transanal excision for the rectal node with Dr. Lenz. He thinks I should go ahead and get the node removed surgically- that will probably happen in January, as it's not an emergency status to need to to do immediately. He did not think I should do the cyberknife, mainly because it involves an invasive procedure first of putting a gold bead in each tumor & that is invasive in the lungs. If it really starts to bother me (which it really isn't- was just more of a concern to find out it was growing)- then he suggested going more the stereotactic radiation route which is very precise, but doesn't involve my lung being pierced first.
Well, happy turkey day everyone- hugs to all!!!!