Maia wrote:Why was the rationale for going back to a chemotherapy combination, instead of adding chemo to the immunotherapy?
Maia- I think there were a few factors that led my onc to not add chemo or Avastin to the Keytruda. Originally I was going to head to Cleveland for a clinical trial to get 10mg/kg of the Keytruda when we found out I could get the Keytruda locally under the compassionate use program. She didn't want to give it to me at first since they were only offering 2mg/kg. But she consulted with the 2 once I saw for 2nd opinions, and they said the dosing shouldn't matter, so then she gave it to me.
I wasn't aware you could do chemo with immunotherapy. I did have a few rounds of FOLFOX with Avastin, but I think she felt that once I progressed those drugs come off the table. I did tell her I was willing to go back on Keytruda - I'm still approved through March of next year to get it through compassionate use. I did absolutely great on it. I went back to work after 3 treatments of it and was able to work up to working 8-12 hours a day. I had a pretty physical job. I think I was able to lift 40-50 lbs, and when I started back I was only able to lift 10. Unfortunately I'm back to being quite weak again.
My onc called me yesterday after getting a hold of the surgeon, and he basically told her that his intention for the exploratory laparoscopy is to check the mucin/fluid in my belly to determine whether or not it's being caused by the cancer progressing or the cancer dying which may indicate the Keytruda had been working all along.
My CEA rose in October and February but that could've been the cancer dying....
I do have an appt on June 7th with a new onc that specializes in people who have failed traditional therapies - maybe he will have the Hail Mary I'm looking for.
jhocno197 wrote:My husband did well on Stivarga for 8-9 months with minimal side effects, as long as he stayed at less than the manufacturer's recommended dose.
I know of several people who have had success with Lonsurf for a year+ with incredibly little in the way of side effects. If you start this drug, make sure they monitor your counts very closely. My husband's were starting to be checked weekly, but one day shy of his next check was when he ended up hospitalized for the final time. Prescribing info only recommends blood count checks on day 15 of the cycle; this may not be enough.
Jhocno197, please accept my condolences on the passing of your husband. You are in my thoughts and prayers. If I do end up starting either one of the drugs I will make sure they check my counts regularly. I get to see them once the dr does, and if anything seems off I usually ask. Like this week the hospital was supposed to take labs when I had the ct, but they had no orders for it, and I wasn't scheduled for labs on the day I saw the dr. The hospital called the nurse and she told them I was to get labs when I saw the dr in case I was getting chemo. It was a bit of a headache.
However I am glad to know that there is the possibility of having one of those drugs keep me stable for at least 6 months.
LeonW wrote:Hi Michelle
Sorry that it didn't work out again, this time. I sincerely hope your surgeon and consultation board will find something that *does* help, sometime soon.
I admire the way you're handling it all. Greetings and best wishes for all of you. Leon
LeonW, thank you for your thoughts! I really appreciate it! I too hope someone can find something that helps soon! I'm not ready to give up yet - so there's always hope.
Best wishes to everyone!