Dear Jeff,

After the phase 1 PDL1 trial (Opdivo), John was in a phase 2 Selinexor trial. It is a kind of targeted therapy. However, he was having major problems with pneumonia and postural hypotension that the doctors decided to take him off it. He was then placed on capcitabine, which has been around for years. He had to stop using that because he was hospitalized for 16 days with pneumonia brought on by silent aspiration. (It is for this reason that I feel very strongly that one should never underestimate swallowing problems.). I think in the interim the nodules grew and he had to be referred to palliative care.

Before he was in the Selinexor trial, he had six doses of Taxol and Carboplatin, which statistically, have a higher success rate than PDL1. The RO also managed to give him two rounds of radiation (20 grays each time) directed at the swollen nodes in his airway while he was having all that chemo.

Can you talk to your medical team about these other drugs? They may at least keep you in a stable condition.

That aside, I am sorry that you are having problems getting approved for Opdivo. I know how hard it is to keep on getting bad news and how scary it is. I do hope that your medical team, like John's, will take a positive approach and let you try whatever they have in their arsenal. I have you in my thoughts.

Last edited by gmcraft; 04-13-2016 05:39 AM.

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.