Hi everyone! It has been a whirlwind few weeks so I'm back to update on my dad and also hoping to receive a bit more advice and/or encouragement on our latest decisions.
So my dad (64 YO) underwent his biopsy, and all testing finally. Official diagnosis - stage IV NSCLC adenocarcinoma. He has a 3-4 cm mass in his right lung pressing into the right ventricle of the heart causing Superior Vena Cava Syndrome. Mild shortness of breath, dizziness and blue veins on his chest from the SVC. Cancer has spread only to the paratracheal lymph nodes, very small amount in the right 4th rib bone, and both adrenals. Brain MRI - negative for cancer. Left lung - negative and nowhere else is showing cancer yet. Initial blood test for genetic mutations came back a few days ago - everything is NEGATIVE! Completely deflated me on that. EKG done the other day - came back abnormal but sinus rhythm normal.
Second opinion at Baptist MD Anderson went as follows: Dr there was more concerned about SVC and palliative care. Wanted to do targeted radiation only to the lung mass to shrink and relieve pressure on the right ventricle. Targeted radiation for 6 weeks, palliative only for those 6 weeks, and wouldn't begin treating the cancer until 6-8 weeks out. This would also mean that he would not be eligible for any clinical trial after the targeted radiation to the lung mass only. Dr said low volume cancer right now.
Went back to first place - Moffitt - a few days later. My concern was the Keytruda/Vorinostat clinical trial they wanted to put my dad in. Had our second visit with the thoracic oncologist there. Went very well. Dr there is not as concerned about the SVC as the dr at Baptist MD Anderson. Said it's not bad enough YET to prolong treating the cancer now, will monitor it and evaluate each time, but that he wants to start cancer treatment now rather than palliative care only first. I felt much better about the clinical trial and we opted for Moffitt and the Keytruda/Vorinostat clinical. Dad was feeling positive and ready to get this started. Moffitt set up the trial, said he still needed another CT and EKG and blood work to get ready for the trial and his first Keytruda infusion was set for today, 3/28. Yesterday the doctor called and said my dad's PDL1 came back 0!! He needed at least a 1 to be eligible for the trial. So today was out and so was this trial. Completely let my dad down and he went from optimistic to feeling defeated.
Dr said the only other option now is Carboplatin and Alimta chemo (standard of care) or a clinical trial they are doing that is Carboplatin, Alimta and a third drug called Pirfenidone (FDA approved immune-enhancing drug for lung fibrosis). Clinical trial is in Phase I so no info on anything about it. Obviously we opted for the clinical trial to receive the same treatment plus the third drug because maybe it's better?
Dr said my dad COULD get Keytruda with chemo NOW but that if he did it would disqualify him from any second line treatment clinical trials that he would be eligible for if he failed the chemo + Pirfenidone clinical trial. We decided that it might be more devastating to disqualify him from any immunotherapy second line clinical trials than to take our chances with Keytruda in first line and have it possibly fail. I know PDL1 isn't always foolproof in who responds to Keytruda as I talked to a lady who had a PDL1 of 0 and Keytruda worked great for her and then a man who had a PDL1 of 90 and Keytruda failed to work for him. He is having another CT and EKG tomorrow to get ready for this new clinical trial and then he will start the Carboplatin/Alimta/Pirfenidone clinical trial this Friday.
I can't help second guess and wonder if opting for Keytruda with chemo in the first line is the better choice or if it's not worth the chance to disqualify him from any second line immunotherapy clinical trials should he fail the first line. My dad is very discouraged with this latest treatment as obviously we'd like above standard of care and right now that's almost his only option until second line unless we did Keytruda first line and put all eggs in one basket. My dad feels this is just going to prolong a little. Dr did say treatment plan is the same but just a different order now. This dr believes as long as a person receives immunotherapy and chemo that it doesn't have to be together at the same time, but will still have the same benefits. I hope that's correct but right now we have to trust him on that. We are still waiting for the other gene mutations to come back, which won't be for a little while, but as of now every single thing is negative. Wondering what everyone's thoughts are on this and if this can still potentially help him have a positive outcome? Dr's goal is obviously to get him to the 5 plus survival mark, but it feels options are dwindling. Thank you!!!!!