Turns for the worse

Yesterday was noteworthy because I bought tickets for me and J to see “Hamilton” in June. It was expensive enough that I’m starting to question the decision a bit, but I’m really looking forward to the play and to seeing it with him. It’s about a month after our 26th anniversary and we didn’t get to do anything big for our 25th last year because he was still recovering from his cancer surgery. So in all, I’m mostly just viewing it as a delayed celebration of our 25th anniversary and a chance to do something memorable together that we will both equally enjoy.

At the same time, though, I think there was a lot of fear motivating my decision to seize the day. Things have not been good on his new chemo and he’s gotten steadily worse each day on it. Now he really does seem like he has a terminal illness, whereas he did not before, even on the other chemo regimen.

Unfortunately, there’s no clear-cut answer to me about what he should do. I know he’s taking the continued chemo in hopes of being around longer, in large part for me and the kids, and I can only feel good about that. But doing so seems at the moment like he’s trading quality of life for quantity of life. It’s hard not to look at him now and feel like he’s dying already…whereas just a couple months ago, they said he had no evidence of disease and he was mostly back to his normal self.

His oncologist said he has a 70-80 percent chance of recurrence if he doesn’t take the maintenance chemo. For some reason, I thought that was a statistic that the doctor was applying to him as an individual. But instead it’s the general recurrence rate for everyone with his stage and type of cancer.

I dug deep into medical research, looking for some real numbers showing the improved outcomes of taking the maintenance chemo. (Average number of months until recurrence, percentage of patients who remained disease-free, etc.) Much to my dismay, I couldn’t find any such data.

There were only a few sites I could find that supported maintenance chemo in general like from the American Society of Clinical Oncology, but even they didn’t have that kind of data and didn’t make a strong case for its use (in my view.) There weren’t even academic or medical journals with the kind of solid data I wanted to find.

As far as I can tell from my research, it’s making it to that 3-year mark with no recurrence that predicts whether or not he’ll survive longer, not how he gets there. We know that his odds of recurrence are 70-80 percent if he doesn’t take the drugs. But what exactly are his odds if he does take them and why is it so hard to find that information? At this rate, how do we know that his odds wouldn’t be just the same as chemo if he did something like the Radical Remission program? If we’re trying to choose the scientific approach, shouldn’t there be more available data to back it up rather than just taking the doctor at his word?

Of course, I had to adjust my tinfoil hat a bit when I discovered that the drug he’s currently taking is made by the same company that makes Ocrevus, the scary MS drug I don’t want to take. But I’m sure that’s just coincidence, albeit one that gave me an initial shudder.

The bigger concern is that I fear my husband’s doctor is giving him too high of a dose. I did find a Chinese study about using the drug as maintenance treatment but it’s supposed to be at literally half the dose he’s on now. It’s hard to understand why his doctor is giving him such a high dose, especially since he currently has no evidence of disease. His previous doctor also kept him on one of the drugs (oxaliplatin, the worst one) for longer than recommended. I feel quite literally like they’re poisoning him…though I guess that’s what chemo is.

And though he has a call into the doctor about it, everything I’ve read says it’s likely his doctor might (or might not) just lower the dose rather than let him go back to the other treatment he successfully took last year. Even though he’s having a grade 2 or 3 skin reaction to the drug—the median onset of which is after 79 days of treatment and he had it by day 12.

I feel like I’m in a really tough spot because I want to support him in everything but especially his cancer treatment…particularly because he’s doing it to be around longer for me and the kids. But I looked for any information that backed up what his doctor was saying and just didn’t find it. That makes me lose a lot of faith in his doctor.

Last night, my husband said he didn’t know if he’ll be able to continue working if he stays on this medication. That’s the first time he’s said anything like that since the whole cancer ordeal began. Like I said, he seems so much worse now than before he took this med. And obviously I’m terrified of the thought of him having to leave his job. We’d have to move, sell his car, and I’d lose access to the life insurance through his employer.

I just feel like things went from pretty good (or at least manageable) to the beginning of a downward spiral in less than two weeks. I’m almost positive that his doctor will just tell him to stay on the same med but reduce the dosage…and I’m afraid my husband will do what the doctor says, even though this has been so bad so far.

I also unfortunately read a lot of stories of people who went on the same med for maintenance chemo and it didn’t make things better. It’s a lot harder to find positive stories about it.

It just seems like in the absence of real data about the likelihood of this regimen to reduce death, how do we know that his odds of recurrence are any lower than if he takes nothing? Why isn’t there any data about this, especially when my husband is trying to use science-based medicine?

I just feel like there are no good answers either way. But for the first time, since he started this drug, my fears that he will die seem more imminent and based on how he seems and feels than about just my worst-case scenarios. Everything within me is screaming that he has to get off this drug, but what alternative is there?

4 Comments

  1. I feel it’s important that both you and your H feel he’s doing worse on this treatment. Is there an option to stop it and then restart when scans etc show the cancer has returned?

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  2. Thanks Jus. He is waiting to see what the doctor says. But typically what you suggested is the usual protocol—watchful waiting with blood tests and scans every 3 months. They said in the past that he needs to stay on chemo because his risk of recurrence is so high?

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