Has Anyone Else Said NO To Steroid Pre-Treatment?

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I'm just wondering, since I feel like the only one who's ever done that. I have type 1 diabetes, and although spending my waking hours shooting up insulin till the cows come home to bring down my blood sugar is very feasible, adjusting my basal insulin to accommodate colossal insulin resistance while I sleep is not. There's no telling when the dexamethasone will wear off -days, maybe, or possibly even weeks- and being unconscious with a load of circulating insulin is not something I'm willing to risk. Neither is out-of-control blood sugar.

So I explained to the coordinator in charge (my onc was on vacation) that I would need to skip dexamethasone, and she understood, having observed the problems another type 1 diabetic had with managing blood sugars. By the time I had my chemo teach, the nurse working with me had had time to get in touch with my oncologist, who simply said no to the idea of skipping the steroid pre-treatment, and left it at that. Except that I had no intention of budging on this issue. Any other issue, sure! But not this issue. And I informed the nurse that I would not consent to taking dexamethasone for any reason. We both wondered what sort of treatment I would end up doing in that case.

I started chemo last week, with my oncologist still on vacation. The word was that Taxotere could not be taken without steroids, so my treatment was switched from TC in 4 infusions over 9 weeks to AC in 4 infusions every other week, the usual steroid treatments (oral and IV) dropped. I had Plan A, Plan B and even Plan C for nausea ready, but ended up needing no nausea meds. I was feeling pretty low and was exhausted for a couple of days, but snapped out of it, and felt energetic and normal after that. It was only the first infusion, and I expect things to get progressively more uncomfortable, but I'm starting to appreciate missing the side effects of dexamethasone. I slept like a log when I was out of sorts, which I think I needed, and my appetite is the same as it was before chemo, so I haven't been eating any more than usual. And most importantly, I haven't had the nightmare blood sugar problem so unavoidable with type 1 diabetics (and type 2 as well) on steroids. Granted, steroids reduce or eliminate many severe side effects of chemo for many people, but given the terrible side effects steroids themselves have, I'm gobsmacked by why they are SO ubiquitous, with virtually no exceptions.

I would have liked to have been given at least the option to decline steroids in a TC regimen, which was the first choice in my treatment, but I was not. Acute edema was the risk they were unwilling to take, despite its low prevalence. Blood sugar was not something they considered a priority at all ("we've had lots of diabetics get through this with no problems... want to talk to some?"). I feel bad for being so unwilling to suck it up like everyone else. It's my body, though, and if you ask me who is in charge of my cancer treatment I'll tell you that I am the one in charge.

I'm just wondering if anyone else has declined steroids, and what became of you.

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  • dltnhm
    dltnhm Member Posts: 873
    edited June 2015

    I was not faced with these decisions as I am not diabetic. I did find the following article on the Memorial Sloan Kettering website which discusses the unique circumstances facing diabetics who need chemotherapy and includes sections on steroid use as well. There is also a link to a study in the body of the article.

    https://www.mskcc.org/blog/how-does-having-diabete...

    Hope this is of some benefit to you.

    Diana

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