Question about PET scan vs biomarkers

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    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.


    Hi Gap,

    Your husband’s response to chemo was certainly amazing, and I hope the good scan results continue.

    Tumor markers are, as you describe, a sort of early warning system.  I am not very familiar with AFP but a rising CA 19-9 is an event that can happen with this cancer that would raise concerns about possible recurrence.

    If a rising CA 19-9 is due to a recurrence (hopefully not), it can take as much as nine months before anything is visible on a scan.  This is a worrying situation to have to live with, but certainly your husband’s doctors will be on full alert for any evidence the cancer is reappearing.  So far, from what you report, the scans look good.  In his case, a recurrence if there is one would be caught early and ideally with a treatment plan already figured out.

    There might be other reasons, though, for an increase in a tumor marker.  In my own experience, my CA 19-9 once rose by about 30% (but still within the normal limit) due to a bout of colitis.  There are benign conditions that can cause the number to go up, and the marker may fluctuate up and down for all sorts of reasons (dehydration, change in body weight, infections, and onset of diabetes are all examples of non cancer reasons for small fluctuations in CA 19-9).  In a few cases, successful chemo has been shown to cause a temporary rise (or “flare”) because dying cancer cells can cause a small increase in CA 19-9.  This is why doctors may take a wait and see approach initially if tumor markers rise a bit.

    It is part of this cancer to live with uncertainty, but certainly your husband’s outcomes so far have exceeded expectations.  The doctor’s call for caution in interpreting his results is reasonable.  This cancer is not a “one and done” type of illness — it is more of a journey with ups and downs.  The good news is the science is advancing rapidly so if the cancer appears to be recurring, there are a lot of tools in the toolbox to address however it manifests.

    I hope your husband continues to receive good news from his scans.  Please stay in touch, your postings are so helpful for other patients  and caregivers.

    Regards, Mary





    Hi everyone.

    I know that each person’s experience with this cancer is unique, but I still wonder if anyone has some pattern to their or their loved one’s remission and progression that would give you some insight to share with me.

    My husband’s combined HCC and ICC went into “near complete” remission after Gem-Cis. Incredible news for us since he was stage 4, grade 3. A PET scan after chemo was stopped showed no signs of the liver tumor mass and the two nodules in his lungs and node near his heart/pericardium showed only low uptake activity. His AFP and CA19-9 went down (neither of those biomarkers were ever very high with his cancer, but they had been above normal and climbing). He stopped Gem-Cis, started immunotherapy, and his AFP and CA19-9 continued going down. He just had another PET scan and his remarkable results from before are even better — no reappearance of the mass on his liver, and the lung and heart nodules now look more like “remnants of something else” and not active cancer sites.

    But… his recent blood test results just posted and I see that his AFP and CA19-9 are slowly ticking up again. They both did so on the last blood test and now we have a second test three weeks later with slight increases in both again. This is not a pattern I wanted to see, obviously. AFP always remained a little above normal following all these treatments, but CA19-9 had dipped down into the normal range. Now they are both above normal again and moving upwards together.

    So I have a question to ask this community: My husband appears to be doing great as far as what the PET scan is finding, but he’s simultaneously seeing small increases in AFP and CA19-9. I’m wondering if this is an early signaling of the end of his remission. Regardless of what the PET scan results are telling us, does this uptick in the biomarkers indicate recurrence has begun? His doctor agreed that the last PET scan was really good news, but also cautioned him not to “spike the football yet.” I don’t want to ask about the significance of the AFP and CA19-9 going up at my husband’s next appointment because if it’s less than great news, my husband isn’t emotionally ready to hear it yet. I would appreciate any thoughts on this.

    Have a lovely summer and cheers!

    EDIT: I just stumbled on what might be an answer to my own question… an answer I was hoping not to read: “CA 19-9 elevations have been shown to precede clinical or radiological recurrence by 2-6 mo.”

    But I would still very much welcome hearing of experiences and thoughts on this, please.

    • This topic was modified 1 month, 2 weeks ago by Gap. Reason: Included found article
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