Me vs. MM: Agent D
It seems that one of the most common (and reviled) topics in the Beacon's columns and forums is dexamethasone and its side effects.
For most of the 15 cycles I've been receiving treatment, I haven't had much in the way of side effects related to the dexamethasone (Decadron). I certainly haven't experienced some of the significant issues that a lot of others have.
Recently however, the effects have been getting more noticeable.
Still, I hadn't planned on using it as a subject for a column, but as fate would have it, I had a "dex" night following treatment last week.
I was fairly exhausted and fell asleep by about 10 p.m., then woke up shortly after midnight with my mind in overdrive. I ended up getting out my computer and put in over four hours of work.
In addition to the work, I also went on several mental side trips, including coming up with the following story. I think it reflects, in a somewhat twisted sense, how unpredictable and absurd our lives can get as we deal with treating our disease and the associated side effects.
I don't want this to be another dex rant, so I hope everybody takes it for the tongue-in-cheek analogy of my changing dexamethasone world that it's meant to be.
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Who knows when this war first started.
I expect sleeper cells were in place long before there was evidence the enemy had invaded my homeland, though I can only guess at how long the cells festered before revealing themselves.
Once the war was engaged, however, I could see that it was going to be a fight to the death, that it would be fought on several fronts, and that it could go on for a long time.
I had several options available to try and combat the enemy's first incursion, and I chose what I hoped would provide the best counterassault - one that would provide an effective, decisive response and force the enemy back for some time.
I ended up going with a tactical insurgence team and recruited agent C, agent R, and agent D, more commonly known as team CRD (sort of like recruiting the Men in Black).†
Agent D had been around for some time and had taken on this enemy many times before, whereas agent R had only some recent experience, and agent C was basically a newcomer.
To date, the team has more than met my expectations, and it looks like they have the enemy on the run for now. However, recent developments made me question the loyalty of the team and I wondered whether one or more of the agents may have their own agenda.
I originally thought the issue might be with one of the newer agents, but evidence suggests it's most likely agent D, because some weeks I utilize the entire CRD team, other weeks agent R and D, and once a month just agent D, yet the issues occur every week.
There's been nothing outright insubordinate in agent D's actions and he's still doing his job, but he seems to be getting more difficult to deal with and our relationship recently has been more strained.
I find myself getting more irritable after dealing with agent D and can pretty much count on losing my voice for a day or two after meeting with him.
He also has a knack for getting my heart rate up, and my face gets flushed to the point it looks like I was on an all-night drinking binge.
It's even to the point now where I'm losing sleep over the situation and stay awake for hours after our mission briefings.
I suppose I shouldn't be surprised with these developments since I had heard rumors of others having similar issues with agent D. I guess I may have been a bit too overconfident though, thinking I was immune to his maneuverings or could keep him under control. I'll just have to hope that things don't get worse.
And if that's not trouble enough, I'm now also hearing concerns that agent R may have been compromised. It appears there's evidence to suggest that, although he may be effective fighting the enemy, secondary assault teams are crossing the borders to the homeland in his wake - but that's a story for another time.
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Peace, and live for a cure.
†Editor’s Note: Most of our readers will probably recognize who the agents C, R, and D are in Kevin’s column. For those, however, who like things a bit more explicit, we will add that there are rumors the agents might be carfilzomib (Kyprolis), Revlimid (lenalidomide), and dexamethasone.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Excellent column, Kevin! You really made me chuckle.
That is exactly how i remember it. I thought I was the only one going through this and having the same dilemas. Thanks.
I really hate that you're having to deal with the side effect of "D", but your creative writing is amazing!! =) My mother also experiences insomnia and hoarseness for several days after D, but, thankfully, as you stated, "... he's still doing his job...".
Well done Kevin. I look forward to our new reinforcements.
hi Kevin, Once the war is won, or at least in a truce or treaty, the Cacaphony of Dreams will Recede!! Best wishes!
That's Halarious Kevin. Humor is good therapy! I laugh even harder thinking of someone reading this and not understanding all of the references and them thinking that you are crazy. :-). Great Story.
Best Wishes
Art
Hi Kevin
Hopefully you won't have to worry about the secondary assault teams invading in Agent R's wake since you won't be dealing with Agent "M" and his sidekicks S,C&T.
Art
Hello Kevin,
I was having the not sleeping problem with Dex just as you are. My doctor prescribed 25 mg
of amitiptyline the night I get the Dex and the next night. It worked like a charm for me and
also helps smooth out that crash that comes about a day-and-a-half later.
Hi Kevin, as a newcomer (two weeks now at the NIH) to the agent C, D and R protocol, I got a kick out of your column. I imagine agent C, the new kid on the block, slashing and burning out those damned plasma cells that occupy so much of my marrow now. For the dex, I have resorted to an occasional xanax. It seems to take the edge off.
I am not currently on these yet, but know I will one day. I hope I can deal as well as you have. Your column has helped me to know that I will not be alone in this journey.
Tomorrow I check in with MD Andersons' Dr Orlowski for treatment consultation...my light chains have been trending up since first diagnosed in January 2011...BM Biopsy revealed 12% plasma cells...I was told a month ago that I might want to start considering treatment with agent D. Kappa Light Chain 322.50; Lambda 1.65; K/L Ratio 195.45. All other parameters remain stable to optimal. I'm a 74 year old senior jock cycling long distances (60-75 miles)...in training for a 100 mile ride in July. I have no tumors, lesions, I'm clean as a whistle at 6'-3" and 185 pounds, trying to move my weight back to 175. What would anyone think I might expect to hear about treatment...just some ideas, thoughts, I'm a big boy now. However. Some of your comments moved me to tears Kevin. Your prayerfully in my thoughts.
LIVESTRONG for a cure, in love
Lisa, Linda, Nancy, Art, Art, Terry L,
Glad you all enjoyed the article and the light-hearted approach to a topic that we usually tend to "rage" about. I particularly like the way some of you carried the theme into your responses. I truly do try and approach this with a sense of humor and consider the effects of dex to be an inconvenience, particularly knowing how much worse a lot of people go through.
Joanne, Lisa B, Sherry, Mary,
It's always comforting to know we're not alone in what we're going through (though it stinks that we're going through it at all). I like that about the Beacon community - it brings people together that can share their common experiences so we can help each other.
Carl,
Sorry to hear that you may need to start treatment. It's good though that you appear to be in great shape. I think that will help you deal with treatment. If you need to start treatment, I'd be surprised if it's only with dex. More likely it will be some combination like RVD. Once you get some options from your doctor, I'm sure a lot of people here can provide some insight on the options. On a related note, I'm similar size (6'-1", 180) as you, and overall have not been slowed by treatment, particularly since I reached CR. I also cycle a lot, putting in about 80-100 miles a week, with some longer rides here and there (and also like you, am planning a 100 miler this summer with my daughter). Good luck.
Kevin, you don't mention the dose of dexamethasone that you are on ; I assume that it is 40mg per week. 3 + years ago my results had hit a road block with velcade and revlimid and the decision to add dex was made. My hematologist wanted to use 40 mg but having had that dose for several months earlier that year, I told him that that wasn't going to happen. I knew that they were doing a study comparing 40mg and 20 mg and I told him I would take 20 mg. Of interest, I asked what was so special about 40 mg and he said nothing, it was just the dosage that had always been used. Benefit was achieved with adding 20 mg ( 40 mg may have been better but who knows ) and the side effects were present but immensely reduced with our own RVD combination . When the RVD study was published later , the dose of dex that was decided on was 20mg. I would suggest that you speak to your doctor about reducing the dose to 20 mg as quality of life is important; velcade started out in studies at twice weekly and 1.3 mg / sq m. with huge problems , it is now given 1 X week at a lower dosage with fewer problems. Myeloma is unusual as for most people you are just treating numbers; however, you can determine early on whether a change in treatment is having a beneficial or detrimental effect. However, if you are part of a formal carfizomib study, your doctor's hands may unfortunately be tied with regards to lowering the dose of the dex.
Kevin,
Your story is spot-on and very funny!
I had one of those nights just last night, where my brain was in overdrive at 3:30am after going to sleep at 11:30pm. What is strange is one of the topics I promised my self I would research in the morning was Dex effects! I had a lot of it several years ago before achieving full remission, but now am taking only 4mg with Chemotherapy twice a week for Relapse. I knew about "Turrett's like effects, but was not aware of waking up wired. So when I turned on my computer at 6:05am, on Myeloma Beacon was your article!
Great article.
John Houston
Kevin
Team D had me in a state of total insanity, including depressions and anxiety that I now have under control as a result of my psycho pharmacologist. I was not aware that these were a possibility so you can just imagine how afraid I was. My Doc has me off of D and Zometa for 3 months now and I am not being treated. Wondering and awaiting the day when he says " OK, it's time to go back to looneyland" However , this time" I WILL BE ARMED".
Thank you for sharing in your column. It's always comforting to know we are not alone out here. great creativity!
Hoping and wishing all the best for you and the MM patient family,
Katy
This is all new to me at the moment. Am just undergoing hospital tests to confirm I have Myeloma. My doctor 'samples' and ailments apparently point to this illness. Underwent bone scans today, bone marrow biopsy tomorrow.
It's good to know that there are websites like yours and individual contributors who are prepared to take time to share their experiences and knowledge for the benefit of others in similar circumstances.
Hi Martin ... All of us here who read the Beacon regularly hope that your tests come back negative and that neither you, nor anyone close to you, has any reason to ever come and read the articles here. Good luck with your tests!
bond007,
I'm currently taking 20mg of dex per week. The trial I'm on calls for 40mg/week for the first eight cycles, then drops to 20mg. Originally, I was supposed to drop again to 10mg, but the study was changed to keep it at 20mg. I think it may just be long term accumulation.
John,
Strange how these coincidences occur. Along those lines, my column was not supposed to get published until tomorrow, but they moved it up two days due to the normal Tue column not being ready. After my column was published, I heard from the normal Tue columnist that his article was also going to be on dex, but with mine coming out he'd have to come out with something else. If his had come out on Tue, I'm not sure if I would have gone ahead with mine or not.
Katy,
Is psycho pharmacologist (I have not heard that term before) a real title, or your name for it? I'm sure I won't find "looneyland" in many medical journals, but it's an appropriate way to describe the stat we get into sometimes. I got into that in a previous column, particularly with respect to some of the chemo dreams I experience.
Martin,
I concur with TerryH - I hope your results are negative so you don't need to come back. If that's not the case however, I hope we can all make the journey easier for you. Good luck.
Nicely written and very timely, Kevin.
Michelle just started her initial treatment last week. (RVD)
We also just sold our house and will be moving in 2 days.
So here is a positive side effect of Dex. Michelle is like the Eveready battery bunny. She just keeps going and going. She just about single handedly packed up the entire house. (-;
We are planning about a 40 mile ride tomorrow. No question she will kick my butt on the big climbs.
Dan
Dan,
You make a good point about the postive side (though I question how positive that is). When I was up doing work in the middle of the night last week, I got more accomplished in four hours then I usually can in two days at work due to meetings and interruptions. Hope selling the house had nothing to do with the MM and it was just something you'd planned on anyway. Good luck with Michelle's treatment and enjoy the bike rides.
Hi Kevin
Agent D in the house!!!!
Loved your write up....
Kevin, when I was taking dex I read in someone's blog that they took the dex at night before they went to bed. I tried it and I slept great and did my buzzing around all the next day! Don't know your schedule but it might be worth a try. Love your column and look forward to it every month!
Suzierose,
I thought of you (and a few others) several times while writing about Agent D. Glad you enjoyed the column.
Kathy,
Thanks for the suggestion. During weeks when I have infusion, I get it mid-day, so can't do much about that. But I'll try taking it just before going to bed on the inbetween weeks since it seems to really kick in after 8-12 hours.
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