11th Update: Lung Fibrosis Hospitalization

11th Update: Lung Fibrosis Hospitalization

September 28, 2018

I'm long overdue on my updates again. Dad's been having little changes daily, but long-term there haven't been any major changes to report since his birthday. He had a really fun and mood boosting visit from his sister and brother in law too.

I think in the last 7 weeks he's only had maybe 3 full chemotherapy treatments and 2 immunotherapy treatments, which is about half of what it should be. I can't really remember the last time he had an event free session. I think he was off most of July due to a bronchial infection and his doctors’ vacation, then he had 3 feverish chemotherapy infusions and 1 immunotherapy session, and he's back to being off again these last couple of weeks.

His Keytruda immunotherapy went smoothly on September 6th, in and out, no issues.

However, he wasn't so lucky for his chemotherapy on September 13th. Because he'd been getting fevers with one drug his doctor cut the dose in half and doubled the infusion time, but it didn't work. He only got about 3/4ths of the way through before he had a bad reaction to Oxaliplatin, the 1st chemotherapy drug. It caused tightness in chest which made everyone panic because he's a male over 50, so they had to admit him to a different hospital across the street from his main oncology one. It was an overly complicated situation with an ambulance even though there wasn't a need. They were worried about heart damage, but thankfully he was fine. The buildup of the toxic platinum caused something like an allergic reaction. It was scary for a little while in the ER because he was totally out of it, delirious and hallucinating, going in and out of consciousness, and speaking nonsense. There the ER doctor found what she thought was a possible infection, but as usual they had no idea if it was pneumonia or sepsis again or a kidney infection or what. All they knew was elevated white blood cells, but he had a booster shot specifically to raise them that week, so no one knew. It was a really horrible ER experience overall.

His 1st week in the hospital they gave him a couple different types of antibiotics because they thought it was a bacterial infection, but when he didn't improve they switched him to antifungal drugs thinking he had a fungus in his lungs, but again he didn't get better. So, then they suspected a viral infection, but he came back negative for everything. After about 10 days of guessing, he started to go into respiratory distress dipping into type 1 respiratory failure. They transferred him from the cardiac floor to the pulmonary floor to keep a better eye on him since he was hypoxic. The infectious disease doctors still come by and test him daily, but they haven't found any infections. They tried steroids on Tuesday and he's slowly been improving over the last 3 days. They were able to take him off the 50% high flow forced oxygen machine and now he's on the regular oxygen machine at 2L. They're back to giving him antibiotics 2x a day as a preventative measure because there might be some fluid or mucous build up in his lungs. He has a dry cough. As soon as his oxygen levels surpass 93 without the aid of the tank he'll be able to go home.

From the multiple chest x-rays the doctors are thinking that the combination of the Keytruda immunotherapy and the Oxaliplatin chemotherapy drug have caused a honeycombing of his lungs with fibrosis. It seems those drugs have aggravated the little bullous he had in his lungs from decades ago and turned them into larger cysts.

His oncologist hasn't said much about how he's going to proceed, but he said he has other options. The allergic reaction to the Oxaliplatin will only get worse, so it's being removed from the chemotherapy cocktail. Likewise, the Keytruda immunotherapy attacks lungs as a side effect, so that has to be stopped as well. The doctor doesn't think any immunotherapy will be safe for my dad. He told my dad that he's on a break from treatment until he's a few weeks out of the hospital and fully recovered. It's looking like he'll have to stay at least another week.

Uncle Bill's Boredom Bag has been coming in handy with the dominoes and cards, so thank you again for that.

His hair is still falling out and he's losing most of his eyelashes. The Gabapentin is helping with the neuropathy. His fingers and toes aren't in pain anymore, but they're still cold all the time. The plastic silverware is still doing the trick to improve the flavor of food and get rid of the metallic taste. His appetite is slowly coming back after being so long without treatments, although he still hasn't gained any extra weight above that constant 145 lbs. The awful hospital food doesn't help either. The 2nd nerve block seemed to have worked and he cut his Fentanyl Patch down from 50 to 37. He's still around a constant 2 or 3 out of 10 for pain. A new spot in his upper back started to bother him. He was supposed to go in for CT/PET Scans last Monday the 17th, but being hospitalized for 2 weeks it's been put on hold. We're anxious for the scans and results to get a better picture of how well the limited treatments have been working.

Relaxing on Ft. Lauderdale Beach with family

Night out at Versailles, goofing off at Uncle Barry's birthday dinner

Music therapy session with an ocean drum

Music therapy session with an ocean drum

Dad recovering from his delirium and hallucinations in the ER

Dad recovering from his delirium and hallucinations in the ER

Uncle Bill's Boredom Bag has been coming in handy with the dominoes and cards, so thank you again for that!

Uncle Bill's Boredom Bag has been coming in handy with the dominoes and cards, so thank you again for that!