Question about PET scan vs biomarkers

Thank you, Mary. I appreciate your time in replying. I often feel very alone since my husband is keeping his cancer diagnosis a secret from everyone except my 86 yr old mother (who lives with us) and my adult son and his wife (who live in Canada right now). I’m grateful that this discussion board exists. Caring for two seniors while I’m no spring chicken myself (59 yrs) is exhausting, especially when one or both are having a health crisis.

My husband’s results have indeed been pretty remarkable but not without cost. He had to discontinue GemCis after 3-1/2 cycles due to it significantly increasing his peripheral neuropathy pain (as I’ve written about before). The fatigue and weakness were pretty extreme, as well. The cytotoxic chemo experience was so difficult for him that it made him actively suicidal. January and February were very dark months for the two of us. I want to be fully open about that because other spouse/family caretakers might find themselves dealing with a similar situation and I wouldn’t want anyone to think they’re alone in coping with an extreme psychological/emotional reaction to the side effects of chemo. It was fortunate that the chemo worked so well, so quickly, for him that stopping that treatment early in the plan still left him with a great success story.

Immunotherapy has been equally harsh for him. He completed four rounds of Opdivo/Yervoy, as was the initial standard treatment plan, but three days after the last infusion I had to call for EMTs to take him to the emergency room. He was extremely mentally confused, too weak to stand or sit up, his oxygen readings were in the mid to low 80s, and he had a fever of 103. They diagnosed him with acute metabolic encephalopathy and secondary adrenal insufficiency… his pituitary gland has punched its time card and gone off on a vacation apparently. He was released after six days and is now on hydrocortisone and levothyroxine. This happened earlier this month. He’d also been showing signs of cognitive impairment since the chemo days and the hormone treatments seem to be helping with that. My husband’s doctor is having him strengthen up for a month before potentially resuming immunotherapy treatments. He was at the next phase of the treatment plan where he’d begin taking just the Opdivo only. He’s desperately hoping that he’ll be able to continue as there are no other proposed treatments left for him to try and he will not go through GemCis again. So we wait… anxiously… and we’ll see in mid-July what the near future holds for my husband. I was hoping that the spike in CA 19-9 might have been due to the adrenal insufficiency episode (and yes, it did spike during chemo for a week or two). But because the AFP has also gone up a bit, and it never spiked up as a reaction to the chemo treatments, I’m concerned.

The roller coaster this cancer puts people through is terribly cruel. Good news! Bad news. Good news! Bad news. Good news! Bad news. I’m always thinking that this will be the last birthday he has, the last spring he has, the last rain he experiences, the last time he sees this or that or whatever. Will he see me turn 60? Will he see our son get his PhD (okay, at the rate my son is working on his dissertation I’m not sure I’ll be around to see it, either, har har). And then I’m so thrilled for him when it seems like he will experience one of those milestones again due to the treatments extending his time. We hit the jackpot to have a great oncologist working from a cancer center with a full lab, full radiology dept, full pharmacy and infusion ward… and only 10 minutes from home. How lucky is that? However, I’ve come to hate the “Looks like everything is going great!” treatment evaluations that are then tempered with cautionary remarks along the lines of “But don’t get too excited.” I really want my husband to be THAT patient who his oncologist will write papers about and discuss at medical conferences: the extraordinary case of the 77 yr old man with stage 4/grade 3 cHCC-CCA who went into full remission and continued to remain symptom free for over a full decade until he passed from some other more gentle natural cause. We’re shooting for the moon, but we’re doing all we can to make that happen.