No Room
In the past several weeks, Chris has continued to improve and gain strength. The home physical therapist was so impressed by his improvement that he said he no longer needs to visit. He's also able to get around the house without a cane. To come so far in just a month is amazing! As well, he's strong enough that we've been able to return to sleeping in bed. What a huge blessing!!
This week we started a new, old chemo. Insurance wouldn't approve the original treatment plan, so they changed to Daratunamab/Darzalex. (Which he was on for almost four years) combined with Carlfizomib and Dex. He has tolerated those both fairly well, so hopefully restarting them will maintain or deepen his response from the last chemo. Even though he had been on it for so long, they had to run the infusion as if he had never had it going SUPER slow. It was a long day. But, one benefit is that we'll be able to get his next treatments at the South Jordan location instead.
The results of his bone marrow biopsy also came back. There were several and it's been years since he's had one so we aren't as familiar with how to interpret them, but felt there wasn't anything alarmingly bad. We asked Sam (the PA) and he said that everything looked as good as we could hope. They were able to get a good sample. It shows approximately 1% cancer cells in his marrow. A good, small number. At diagnosis it was 90% (if I'm looking at the right number in the right test). As well it also show that the cells have the CD38 marker. When we stopped Dara they mentioned that it might have quit working because the cancer cells were no longer expressing CD38 so I've been worried. It's a good sign that Dara will likely work. Finally, the FISH (genetic results) show no high risk mutations.
The biopsy shows that the issue is more with the extramedullary masses in his abdomen. His PET scan shows significant improvement there. The ones in his lower abdomen are gone and the single one we could feel in his upper abdomen is smaller and less active. Everything combined paints a much better picture with more optimism and hope for the future. But still so very complicated.
On Thursday we made some simple plans for the weekend. But that all changed Friday morning. His heart rate was elevated, he was winded after walking and something felt off. We contacted his team and decided a visit to the ACC (Huntsman's version of an ER) was best. They made an appointment and we headed up.
They one thing we didn't check at home, his oxygen, was in the low 70's when they tested. He was put on various masks and oxygen levels as high as 15 liters before they settled on a bipap. Which brought his oxygen back to the normal 90's. They ran a ton of tests to figure out what was wrong. They talked right away about moving him to the ICU, but there were no rooms at Huntsman. So he was transferred to the UofU MICU (Medical ICU, they have multiple ICU's). Uggg, we've had horrible experiences here, and hoped to never come again. But well, here we are.
There were numerous things we thought it could be. But it's been one we hadn't considered. Rhinovirus...the common cold. Grateful that so far the other things aren't the likely cause and hoping he'll be on the mend and back again soon.
Aside from a terrifying moment where they were swapping from a high flow nasal cannula back to the bipap, where his oxygen dropped into the 30's within about 10-15 seconds today has been a fairly uneventful day. He's feeling better today than yesterday and was able to work with PT to get moved to a chair. We've been sitting overlooking the snowy valley with the world cup playing in the background. At least the room has a nice view.
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