Opdivo and life

James was in for the first Opdivo infusion yesterday. Fairly uneventful. We did bloodwork first, saw Dr W (the medical oncologist) asked a bunch of questions then went in for the infusion.

Bloodwork was ok. They're monitoring thyroid and increased the med a bit. As a reminder one lobe was removed during laryngectomy. The Opdivo could also impact thyroid so they've increased the meds. We picked up pain meds and filled a saline script at the hospital pharmacy, nice there is one right in the same building as all we do. The saline is used during respiratory therapy and with a small nebulizer for humidity. Nice that they keep the little saline "bullets" in stock in the specialty pharmacy and also that they're covered 100% by our med insurance. The nebulizer I'd purchased is a "Yoofor" portable steam compressor found on Amazon after reading a million reviews. Funny (or sad) that the med ins covered a slew of Albuterol but not a nebulizer. Makes no sense but luckily it wasn't a crazy expensive piece of equipment.

We'd asked Dr W a couple questions about Opdivo. After chatting with my Aunt (thank you Aunt Rose) I learned that my dear cousin works with clinical trials as a biochemist (I think that's correct Mary?) and is extremely knowledgable about immunotherapy actually running clinical trials. She'd asked if James had a PD-L1 test. We asked Dr W and were told that he had not been tested for it although they could. He said no matter the PD-L1 level shown they would still try Opdivo as it does still work in instances of low PD-L1. It's all a little over my head. I need to do more research and pick Mary's brain a bit more. My newest question would be if the PD-L1 marker is low would an alternate immuotherapy work better or do they all function off of PD-L1 level....

The Opdivo will be administered by infusion every 4 weeks with CT scan every 3 cycles so every 12 weeks. The first CT, we were told, is in most instances very false positive so we won't really know until 2nd cycle is completed at 24 weeks whether the immunotherapy is working. Between now/then we live. We watch for any adverse reactions to the Opdivo including rash, fever, issues with lungs which could mimic pneumonia. So far so good in that we haven't seen any change. Hoping with our entire beings that this will work to keep James going indefinitely.

Mornings are slow. He's resting again now eyes closed wearing the nebulizer mask. Morning meds have been taken and he's liberally coated with biofreeze gel. It's a menthol gel and a miracle for quick relief (lasts 20 min to a half hour). We have tubes all over the house. We put in on mostly left side neck down to shoulder but he's recently wanted more over to the center/right too. I had been buying it in pharmacies, etc, but also found it on Amazon for less $. I can buy 3 tubes at a time which are 4 oz ea for $26.85 with free shipping. Locally I'd been buying smaller 3 oz tubes for $11-14 each, yikes. I swear Amazon is going to take over the world and I'd love to support local business more but when it's tricky to go out shopping and you need medical supplies and money is tight and you can write off Amazon Prime for your business it's a savior. I feel like I'm an Amazon ad.... not.

The mental duress of dueling contemplation, positive thinking that treatment will work vs the alternate is what is most difficult for me. He's doing well, energy levels in a state of flux. I think he has a mental list of everything he'd like to get done. As a self employed Jack of all Trades he'd worked on other peoples houses and our property fell by the wayside so the house is in rough shape. He's been puttering with repairing our windows and doors, painting and rebuilding things. Slowly but surely. Keeping busy in the afternoon/evening. Resting early in the day. Awake on/off with his thoughts through the night. For the first time last night I slept on the couch again, he's in the recliner. It's more comfortable for him to be semi upright for breathing and neck and pain. I slept better on the couch than I had been upstairs because I was waking up on/off worrying about him alone downstairs. Perhaps our new normal.

I'm pushing to finish up overdo bead orders this weekend so that we can leave tomorrow for an impromptu week or so at the NH cabin. We need to escape reality for a bit. James wants to build out a couple doors. I'll assist. Hopefully he'll do a little fishing and we'll enjoy being in the wild. Forgetting reality.