severe mood/endocrine/mental health effects from steroids?

cadencej

New here- my husband was dx fall 2023 with stage 4 oligometastatic CRC (mets to liver). He is (thank God!) NED as of a couple months ago, after 4 months of CAPOX, LAR/hai pump install, HAI pump chemo + systemic irinotecan, ablation, 4 more months of irinotecan, liver resection, HAI pump replacement. He is now on cleanup HAI pump chemo and irinotecan. The first time he did HAI chemo and irinotecan the side effects were mild (especially compared to CAPOX). the second time with irinotecan he started to get very low mood/motivation, especially at night. He has a history of CPTSD and of course people w/ cancer get depressed so we chalked it up to that. But the nighttime crashes kept worsening- like clockwork at 9- 9:30 pm every night. He gets very low mood and depressed, feels "tired but wired" and resists sleep, if he doesn't go to sleep by 10:30 he gets insomnia, has impulse control issues (food, online spending) etc. (At least he takes trazodone for sleep and has agreed for the time being to take it by 10 every night so he's usually out by 10:30, before it gets bad).

When our couples therapist suggested there might be a metabolic cause, I brought it up with his oncologist who tested his cortisol levels, which came back at almost zero. Cortisol drops at 9/9:30 pm every night for all of us, so she said she thinks the crashes are his already-low cortisol plummeting. He is currently on HAI pump chemo which comes with 23 mg of dexamethasone that gets gradually released over the course of two weeks. I think the steroids had already messed with his cortisol levels (people with CPTSD also tend to have low cortisol already) but with the steroids now, the mood effects are so severe. He has zero stress tolerance, had an episode of what i think was steroid psychosis, is extremely irritable and sometimes yells/gets uncharacteristically aggressive and angry, alternating with very low/depressed moods, plus the nighttime thing. there's constant anxiety, but it cycles between agitated anxiety and depressed anxiety.

He is already on antidepressants (SSRI and wellbutrin, and microdose of abilify) and he has a good psychiatrist who's added prescription ketamine, which helps as a band aid but is very short term (because the steroids are ongoing, and are actively working against its effects in the brain). They took away the steroids with the systemic irinotecan, and he has two weeks on/two weeks off with the pump; when he's off the steroids his cortisol is testing high (which also causes anxiety/agitation/etc) so it's swinging all over the place.

He's got two more months. He really wants to finish the four rounds; he's being treated with curative intent and the HAI cleanup is an aggressive move with a lot of research that shows it making a significant difference in terms of recurrence. But the mental health effects are severe and almost intolerable. The endocrinologist says she can't do anything till he's off steroids (most of the blood tests that would give her a clear picture are so altered by steroids that the information wont be useful). His oncologist's office doesnt know nearly as much about mental health side effects as physical ones, and the attitude is mostly "tough it out." It's taking forever to get an appointment with endocrinology within MSK to see if they can help and I don't have a ton of faith that they will (they mostly deal with endocrine cancers). I'm doing tons of research and working with his psychiatrist to find meds that might help (he's prescribing low dose naltrexone and gabapentin to start) but it seems really hard to find info about how to deal with this that's not just "get off the steroids." He can't.

We need some kind of medication or something to help counterbalance this or at least stabilize it a bit. Has anyone else had experience with this? How did you get through it? Did any doctors anywhere suggest anything (medication or otherwise) that helped? (Also open to commiseration from fellow caregiver partners/spouses on how you dealt with it emotionally—it's rough on a marriage, even if i know it's physiological).

bibliophile

So sorry you are going through this. I don't have much advice on the medical side except to affirm that the mental health aspects of the steroids can be brutal. I had a bad mental health reaction to steroids they put me on for different reasons (short -term crazy high dose to combat CT contrast allergy) and the mental health side effects lasted for weeks. My husband was a saint to put up with me. I knew I was being crazy and still didn't feel like I could control it. So I commiserate with you and applaud your patience even though I know it must be really difficult. Also, going cold turkey on the 2 weeks off might be difficult. Stepping down steroids (gradually reducing the dose over a few days) typically helps modulate the mental health issues more effectively and I believe not stepping down the dose was what caused such horrible side effects in my case. I don't know if there is a way they can do that during his off cycle. Other than the cliché anxiety-relieving techniques, listening to "brown noise" (just google a youtube video) sometimes helped when I was feeling especially agitated. There is something physiological to it that I don't exactly understand, but it worked for me. I know those seem like ridiculously simplistic answers when your situation is obviously very medically complex. I hope that you can find some good answers. Hugs, and wishing you the best!