“Take cover – it’s DEX DAY!” – Myeloma Caregivers joking around with each other on the subject of the steroid, Dexamethasone.
Dexamethasone, is a love/hate relationship. It has clearly been shown to enhance the chemotherapy drugs myeloma patients are taking in all genre’s of treatment. That’s the love part, in case you’re wondering. But it’s a muscle waster, not a muscle builder, and it changes the body dramatically, it’s look and strength. It can increase the chances of developing diabetes if you don’t become very proactive on your Dex Days and subsequent days coming off the intense energy, about what you are eating. In the case of my husband, they took him off it after 18 months; he developed serious edema (water retention) that potentially could have caused a whole host of other health issues. But I think the change we all notice most is how aggressive our loved ones are.
This aggression is ever present in whatever mood they are manifesting. Can you imagine someone who is aggressively happy? Well, on Dex, it’s totally possible. Generally it is more problematic when they are angry, depressed, in pain and you add Dex to the mix and you do indeed need to take cover and have some strategies in place.
The good news is it is predictable. Most myeloma patients have a Dex Day each week that coincides with some aspect of their other chemo treatment.
Here are some very simplistic strategies that can get you started and perhaps you can tweak for your own situation.
Have healthy snacks, preferably homemade, available for your patient at all times. Foods they can eat a lot of when they get overzealous munchies. No restrictions on healthy snacks they can gorge to their heart’s content.
Take the Dex dose at night before bed. This tip seems odd at first, but many dex induced insomniac myeloma patients have given this a try and swear by it. If you take it in the morning your energizer bunny slowly builds all day and is in full swing and shows no sign of winding down very late into the night and they simply cannot sleep. Taking the Dex before bed, allows them to steal a good solid 5-6 hours of sleep before their eyes fly open and they are ready to roll! By the end of the day exhaustion sets in and generally a decent night sleep can be a reality. Give it a try and see if it helps.
Do not, do not, do not, antagonize, counter, argue, with your patient while they are on Dex. Use that day to go out with your friends or run errands. Lay low. If a situation occurs, consider it a marriage encounter drill where one spouse gets to ream you out and you can’t flinch or say anything back. You have to present a calm, confident, caring expression of total understanding, beg for forgiveness for whatever crime you have been accused of committing.
If they are experiencing road rage, for instance, don’t go out on Dex Day. You definitely will need to make some adjustments in your life to work around its havoc. It’s quite doable and not that bad once you put in some simple changes.
Interestingly, you can have this conversation with them and they can participate in altering behaviors. Just don’t have the conversation on Dex Day.
When Dave first started on his dex/thalidomide, he was in tremendous pain and scared. He was mean and nasty. My mild mannered Clark Kent, was screaming and yelling at all of us imbeciles with a face that reminded me of Sgt. Carter on Gomer Pyle! He made us all cry. Surprisingly, once his pain got managed and then ultimately fixed, the meanness disappeared. He was still noticeably aggressive and an energizer bunny, but at least he wasn’t scaring the bejeebies out of everyone.
I remember having a casual conversation with one of his trusty co-workers that helped dispense his requests to the team. He gently and casually mentioned that Dave seemed to come into the office with a vengeance on Monday mornings. I burst out laughing. I was in tears of hysterical laughter, reaching out to him to just give me a moment to compose myself. When I finally came up for air I said, “Oh, Bill. Monday’s are Dex Day!” He was smiling now, but trying to get more information, “Dex Day?” Yes! So I told him. His eyes got wide, his smile got wider and he threw his head back and laughed with me. “Oh Wow! Thanks for telling me! I will let the guys know, because we were wondering…” I relayed the conversation to Dave and he was cracking up. “Oh GREAT! Now they won’t take me as seriously. Mondays were always very productive!” Sure enough Dave would come in on his Dex Day and everyone was now ready for him. I love the guys he works with. I really do.
I’ve had conversations, particularly with female caregivers, about Dex Day and it is always one that brings us to peels of laughter telling stories of the stuff they do when they are on Dex. Granted, it isn’t like that in the first days of experiencing this dramatic change in our loved one. Once we find others and talk about it, there is that sense of relief we share in our misery of being the recipient of their wrath.
One of the odder things I noticed with Dave, aside from him returning to my mild mannered Clark Kent the following day, was that he generally had amnesia on any wrath he inflicted or upset he experienced. If it weren’t for other family members nodding their heads, I don’t think he would have believed me that he was out of control.
We were very happy to get Dex out of our regimen. I got him some lasix to try to mitigate the edema, but he wouldn’t take it because he was running to the bathroom all day. So the doctors decided to just eliminate it from his maintenance chemotherapy. Of course, the downside is, we lose increased efficacy of the other drugs. For us, the doctors were comfortable with it because Dave is a low risk presentation and in CR. But you know, it nags at you…
Oh my, you are all indeed having a tough time with it. And yes, taking it at night has become something a lot have switched to for the sleep issues. Also check with your doc on the dose and see if you can lower it. Sometimes they are fairly arbitrary about the dosing they select. Another bone of contention for many of us. 🙂
You can take it at night? You CAN?! Oh wow – why did nobody tell us?
My husband’s Dexy day is hell. Every Wednesday, with aftershocks through to Saturday morning. It has variously involved: buying a new car then arguing with the seller that it was useless because it had no CD player; climbing onto the roof to repair a cracked skylight… in the dark, with nobody holding the ladder; ranting at my daughter and I for opening a box of aluminium foil “the wrong way” (there’s a right way?)… the list goes on. Last week, he apologised on the Sunday because he realised he had been “not himself”… but when it’s once a week, it becomes part of who he appears to be, especially to people outside of the family.
I believe quinine increases the diabetes risk too and he needs that for the Revlimid cramps. Ugh.
Yes Shelley, that can often be the case and was when my husband was first diagnosed. It was pretty horrible.
Most of you talk about taking DEX once a week. My husband is on it for 4 days and then off for 4 days. I think the doctor called it “pulse” therapy. But I don’t even have to ask my husband when he’s taking it. He is a different person on that days. 🙁
Haha, I LOVE that Hugh! Ask the caregiver! 🙂
Thank you Sam for your input. And of course, I completely subscribe to your view of facing the trials as they come. Worrying about all that might happen seems to only make what does happen exponentially profound. There is a fine line between being educated and informed and what that does to your anxiety factor. 🙂
Wow, all good accurate stories of D-day. I was on 10 Dex pills a day for the first four days of the month for years. This only, no other chemo. Taking it at night as discussed here and had the hiccups as regular as rain. There is a pill for the hiccups that really works! I developed diabetes and now that I am off Dex that has normalized, no more diabetes.
Tough to put up with, for the people around you. My doctor says, “if you want to know how the Dex is going, ask the caregiver!”
Hugh
This is a timely post about D-Day, and everything you say is pretty much universal. I took my 1st dose of DEX on a Friday, and screwed up the whole weekend, so I have switched to taking it on Mondays now, leaving the Revlimid on schedule ; I can count on 2 days of being ‘wired’ with the hiccups on the 2d day; by 48 hrs out things are normalizing as the dex is washed out. I will get wired up and have the insomnia,etc. whether taking it in the AM or at bedtime (but that is just my experience) and will usually be up reading at 3 AM for couple of nights! I will start my 2d cycle of Revlimid in 2 more days, and the one irritating thing I have to notice with that (of many possibilities) is the shortness of breath with exertion and chest tightness for which my cardiologist insisted on a heart cath (totally normal, BTW). This leads me back to the anemia and the MM as the causes and not angina; so I have only 12 more D-Days to go during the induction chemo, and really hope that, if I don’t have an early SCT the doc will drop the Dex and keep up the Revlimid alone. There is more than one recipe, and mine comes out of Mayo, so I’ll stick with it knowing the alternative. The blood sugar is checked at the end of the cycle, but if you are diabetic prone or have a family history of diabetes, then getting an Accu-Check device at the pharmacy can help you to monitor the glucose level at home. Concern of a pulmonary embolus on Revlimid, is real (but rare) and many PE’s don’t have leg pain or swelling in the legs to warn you. It is easy to miss if one doesn’t have a high index of suspicion. I saw MANY Pe’s as an ED doc, and many had atypical chest pain; I have a tendency to diagnose myself and I’m usually wrong since it is hard to be objective for myself. Just keep your doc informed of all symptoms, he ain’t a mind reader. Your caregiver is not a mind reader either. Being newly diagnosed, going through the workup, starting the induction chemo all have changed me in a lot of ways, and I have come to grips with what I may have to face down the road. MM is not my identity, and I don’t spiritualize everything in my life; but I am willing to face each trial as it comes, and the trials will come. My significance is not in my trial; may you always give to others and let others give to you. Peace.
So I know that many of you have some very funny stories about Dex. Mine is that when the movers arrived and boxes and boxes were stacked in every nook and cranny, Dave, who didn’t get to come back to Maryland and pack his stuff, was demanding to know where certain things of his were. And if I didn’t know which of the 500 boxes it was in then it was LOST! He would rant and rave about it being LOST! It was so bad that his mother and father stopped what they were doing to open every box until they could find it. Of course this made for a mess instead of some systematic organizing of finding homes for things when you’re ready. Once the LOST thing was located he would start in on something else. There was absolutely no reasoning with him. And I’m still mad at him for it! :)haha