It was another long week. Hard to believe they just keep getting worse.
First, we did have one little bright spot. Our team wanted to cheer Eric up after the previous rough couple of weeks, so they arranged for us to have Michael Bublé's Superhero suite at the Vancouver Giants game on Sunday. Eric was definitely not 100% but he had a good time at the game and visiting with his friends. It was the first time he'd been out in weeks and I was just so happy he was able to leave him room and the house.
Monday we were back to clinic where I got the results from the biopsy the previous week. The abnormal cells are approximately 80% and blasts are 20-30%. They didn't have the final result at that point, but a blast count in his marrow over 20% means he has AML (Acute Myeloid Leukemia) in addition to his original MDS (Myelodysplastic Syndrome.) These results are worse than the last biopsy just before Christmas, but pretty similar to the one before that. This was not a surprising result because I had been seeing the blast count in Eric's peripheral blood increase.
I did already have the results from the Lumbar Puncture but I might have forgotten to share; the CSF (cerebral spinal fluid) was clear which was expected and is very good news.
Eric's Oncologist said we needed to act or we would likely lose control at some point in the future, but hard to know the timeframe. He gave me a couple options for going forward, but was waiting on some approvals. He expected to have that by Friday and suggested we would likely start something different Monday. In the meantime we continue with the Revumenib because stopping would likely cause us to lose control faster.
Tuesday and Wednesday Eric was home and still headache-y. He spent most of his time in his room in the dark.
Thursday we were headed back to clinic. It was planned for that day to get us back to our regular schedule. Eric got his platelets and I went to talk to his team again. His Oncologist showed me Eric's blood counts and the blasts had almost doubled since Monday. He suggested we needed to act before Monday. He didn't have the approvals yet, but what he wanted to do was go back to the previous treatment: 5 days of IV chemo (Azacitidine/5Aza) plus 28 days of oral therapy (Venetoclax). This is the combo that put Eric into remission for about 9 months, but then stopped working as effectively. He suggested we start the following day, Friday, but since we were already there, I asked if we could just start that day. Unfortunately, since Eric had a significant amount of blasts, he wanted us to be inpatient for the treatment to watch for Tumor Lysis Syndrome, which occurs when blasts break down too quickly. Eric did end up being admitted Thursday and starting treatment that afternoon, instead of going home Thursday and coming back Friday to start treatment. I had not expected to be staying that day, but it was even harder for Eric because I had only told him that morning that he was going to have to start a new treatment. (Not to mention, him actually being the one having the treatment, obviously.) I'm usually very up front with him, but he just hasn't been feeling well enough to have a conversation about it. Chuck was able to come in the evening and bring us some stuff from home, like my mattress topper!
Since Eric is still having the headaches, his Oncologist said he'd take advantage of him being here to do a scan. He had a "quick" MRI scheduled for Friday morning. It was non-sedated but Eric was such a champ. I guess after doing it once before, it is easy-peasy now. We loaded him up on pain meds before heading downstairs to MRI so he could be comfortable. Unfortunately, MRI wants patients in a gown in case there is metal in their clothing, and for some reason, the hospital only has adult sized gowns. Eric was livid. Putting it on and getting in bed and then transferring to a wheel chair and then a bed in MRI and then a wheelchair and then the MRI table and then all of that in reverse, was very difficult and uncomfortable. Eric wanted to burn the gown when we got upstairs and he was quite serious so luckily he had no access to fire. On the plus side, the MRI was clear. Again, no cause for the headaches has been identified. I still think its the flu, but I wish it would go away.
Later in the day, Eric's Oncologist stopped by. He said that he did not get either of the approvals that he had applied for. One of them he didn't expect to get, but the other one he did. It was for BC Cancer to fund a new-to-Eric med. It has been used in breast cancer treatment, but there was recently a study published where it was used in China in combination with the 5Aza and Venetoclax that Eric started Thursday, in children with Eric's specific mutation. It was deemed "safe" and actually fairly successful. He said they are going to fund it internally though, so Eric will still get access to it. The way it is used is to start on Day 6 after the 5 days of IV chemo. It is an oral med so Eric will be able to take it at home, but they want to keep him for a bit when he first starts to monitor his response, though it is well tolerated. I had been planning to go home on Monday, Day 5, but I guess we'll be sticking around for a few more days.
Today will be Day 3 of this new round of treatment. Eric's bloodwork is looking good. The blast count has come down substantially and there is no sign of TLS. Unfortunately Eric is still having headaches so he's pretty miserable. He's got all the pain meds, but the sunshine is not helping. The room is quite bright even with the blinds down. The doctor today actually suggested we try a little caffeine to see if that helps, so I'm going to go get him a coke from the vending machine. He's never had coke before so I hope he likes it.
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