Dexamethasone: the good, the bad and the ugly

I have a hate/hate relationship with Dexamethasone, but I have to acknowledge that it has knocked my light chains down all on its own prior to starting treatment  and whether I like it or not, it is part of my treatment and I have to get on with it. This is about my relationship with Dex.

The Good Stuff

Dexamethasone is a corticosteroid seemingly used in all treatment combinations for myeloma and sometimes on its own, in fact Dexamethasone, given in high doses, is the most active single agent for the treatment of myeloma.  I find this quite astonishing given the development of the many new drugs over recent years.  Dex also increases the ability of chemotherapeutic agents to destroy myeloma cells as well as helping reduce inflammation and allergic reactions to chemotherapy. Quite why or how it is so effective in the treatment of myeloma nobody seems to know.  It appears to cause programmed cell death, also known as apoptosis and can trigger the destruction of myeloma cells.  So that is really good.  I know this absolutely as before I started treatment waiting for the trial to start I was given two 4 day courses of Dex with about a month in between to try and keep the myeloma under control. Before I started the second course my light chains had gone sky high to 6400 but a couple of weeks later they had dropped to 2900.

However it does come with many strings attached in the form of side effects. The good ones for me are:-

1. More energy on the days I take them. I don’t take them everyday but on days 1,2,4,5,8,9,11 and 12 of my 21 day cycle, I take them on the day I have Velcade and the day after. Thanks to Dex, I have danced, stayed up later than usual, played tennis,  tidied up the garden for the winter and cooked dinner for friends.  Dex has helped overcome the fatigue caused by the chemotherapy. I am usually more upbeat and confident on dex days.

2. Erm, can’t think of anymore good things………

Although not a side effect, I quite like the fact that the tablets I take are supplied by Onyx (the trial sponsors) and the writing on the box is in German with a leaflet stuck  onto the box in many languages. The tablets are also quite pretty as they have a curvy criss cross pattern and they are 5mg per tablet whereas the UK standard ones are 2mg. My trial bloods are sent to a lab in France to be tested so I feel as if I am participating in some special stylish european project!

2013-11-16 16.19.50

The Bad

1. Insomnia and sleep disturbance. I am often wide awake at 3 or 4 in the morning, unable to get back to sleep but also unable to do anything useful with this time other than stressing about how I am going to get up for work in the morning.

2. Dex gives me an insatiable appetite for sugary junk food and this is precisely the kind of food that I shouldn’t be eating at the moment because I have steroid induced diabetes. Dex raises my blood sugar levels on the days I take it and I have to be careful what I eat ie cut out the sugary, refined foods which are what I crave.  I monitor my blood sugar levels with a testing kit although it has never been made clear to me what I should do if they are too high or what symptoms I might experience. The docs wanted to put me on Insulin but I said I would try and manage it through diet. However on the days I don’t take dex, I eat plenty of cake and anything else I can find in the cupboard or the fridge.

3. Following on from the above, not surprisingly is weight gain, can’t sleep, have something to eat, crave food, raid the fridge etc etc, I can still find plenty of non sugary junk food to eat. Weight gain is pretty common on steroids, unfortunately corticosteroids are not the type of steroids which can turn fat into muscle, I think those are anabolic steroids.

4. Muscle wasting,  I have gone from a fit triathlon competitor to a soggy shape in the space of a few months. Oh how the mighty have fallen!

5. On from the above, I wish I could channel the energy that dex gives into doing some exercise but unfortunately another side effect that I experience is heavy legs, they sometimes feel like they are filled with concrete which of course makes it difficult to run, walk or do anything much.

6. Slightly blurred vision, like my glasses always need cleaning.

7. Hirsutism and thinning of hair on the scalp.  I have more facial hair and a faint moustache but my hair is thinning on my scalp. Not very attractive!

8. Red round face, often called a moon face, the classic sign of taking steroids. People on steroids should have their own Moonies cult!

moonface

Whilst googling images of a moon face, I came across this image below about Cushings Syndrome which is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Long term use of dexamethasone can lead to Cushings Syndrome and it appears that I already have quite a few of the symptoms!

Lady

What I experience above is awful but I can put up with having a moon face (with a moustache), being overweight and exhausted in the knowledge that Dex is helping my treatment work and when I stop taking it these symptoms will eventually disappear.  In the meantime I can work on my vanity issues!

The Ugly

This is much harder to deal with.  The ugly happens more when I am withdrawing from dex especially in week 3 of my cycle.  My consultant wrote on the consent form that I signed before starting treatment that it caused “emotional lability”, the medical definition of which is “a condition of excessive emotional reactions and frequent mood changes”.

I guess that sums up my experience in a clinical way although my mood doesn’t alter much between low and high, more like low and really low. I am depressed, tired and shaky, mentally and physically,  I am easily irritated by myself and others, restless and edgy.  Nothing I do or say feels right but I don’t know  what would feel right.  I find it difficult to be with people because I feel socially inept and lacking in confidence.  My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected.  I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

I have to keep reminding myself that what I am experiencing is a purely chemical reaction in my body to the lack of the steroid it has become accustomed to and that once I stop taking it eventually I will return to my “normal” state of mind. Not sure what that is these days as this year so far has been full of emotional turbulence. Whatever it is, I look forward to finding out, who wants to be normal anyway!

“It may be normal, darling; but I’d rather be natural.”
― Truman CapoteBreakfast at Tiffany’s

 

D(ex)-Day

“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 […]

The World of MM

I’m in the middle of my marketing class right now. Clearly, I am paying attention.

Here are some links to news and updates in the Myeloma world. I’ll explain them in further detail when I get home!

Carflizomib gets fast-track designation from FDA for treatment of refractory/relapsed Multiple Myeloma patients. Yay! Click HERE

Revlimid Maintenance and Secondary Cancers – More details emerge. BOOO! Click HERE

Why should you take Dex(amethasone) with food? Click HERE

Oh Happy Day!

Well, it’s probably time for an update on Mama Bear and LIFE! How sweet it is :) Before I begin, i’ll apologize in advance if my grammar and/or sanity get lost in translation. The repairmen came to fix a bunch of things in the apartment, so you know what THAT means! Yep, i’ve been inhaling the wonderful fragrances of GLUE, DRYWALL, and PAINT for the last 5-6 hours. joy. 
Anyway…
Mama Bear had her check up with the good doctor on Tuesday to see if we would need to go through with another transplant. Fuck. The days leading up to the appointment were filled with absolute DREAD as I had been almost 100% sure that she would have to go in (which would have been the following Thursday aka TWO.DAYS.LATER). Over the break, I had the chance to go back to the Tom Baker Cancer Centre for one of her chemo sessions and was able to look over her blood work. Her CBCs were pretty stable, but her Total Protein, which is a mix of both good protein and BAD protein (aka Myeloma protein), had gone up a little. Based on our history, rises in the total protein have never been because of the good protein going up. Aside from that, her Beta-2-Microglobulin levels had also gone up a little as well… Recent discussions on the ListServ on this matter have informed me that it is a new prognostic measure for myeloma patients. In other words, you do not want this number going up. Of course, I didn’t tell her any of this because I didn’t want her to worry. But all these things combined led me to believe that a transplant would definitely happen. Needless to say, it wouldn’t have been a very good start to the new year. But, to my surprise, my mom answered the phone with sunshine in her voice, saying that her m-spike (myeloma protein) had actually gone DOWN from 13 to 11. Granted, it’s not a lot, but any decrease is a step in the right direction, yes? That was a SHOCK. Our doctor had also said that her FreeLite Chain things (i’m still unsure about what these are exactly, so i’ll have to research it a bit more) went down a lot. Apparently, it is a better indicator of where you’re at than the m-spike? This, i’m not too convinced. I’m a little skeptical. Why had we never looked at these numbers in all the appointments before???? So, it’s still something that requires a little more investigation on my part. But I do trust our doctor. He’s a very good man, I just don’t understand what’s really happening and need to gain a little more information/control on my part. Anyway, he recommended, instead of a transplant, adding on another drug, Revlimid, to her current regimen. That brings the total to a chemo cocktail of 4 different drugs: Dexamethasone (Dex), Revlimid, Bortezomib (Velcade), and Cyclophosphamide (Cytoxan). Technically, Dex is a steroid, but whatever. A drug is a drug. I’m not the most elated with adding another drug to her regimen, as the body can only handle so much. And with the recent findings that Revlimid can cause secondary cancers, well… yeah. But I suppose it’s better than the alternative, yes? I’m pretty sure another transplant is due down the road, but right now is probably one of the worst times to do one. Flus, slippery ice, cold weather, etc. do NOT make for an easy recovery. Regardless though, I’m extremely grateful that that day was filled with good news, more so that my mom didn’t have to receive any bad news. I could tell BOTH my parents were relieved. It’s funny though. The night before, I prayed, like any other night. But instead I decided to ask just that the appointment would go well. Just one thing, not a whole list of things like my overall family’s health, happiness, etc. One precise, specific thing. And it’s like God, or someone, heard my prayers. So since then i’ve just been sending up prayers of gratitude and thanks. Aside from the obvious, I have nothing to ask for right now and plenty to be thankful for. I can tell we’re all growing a little weary of this, but anytime you receive good news, it   fuels the fires that push you forward. A dear friend of ours, whom we met during this whole ordeal, recently came thisclose to dying. From what I was told, his numbers came back so high they asked the technicians if there was a mistake, perhaps in a decimal placement or something. But nope, they were the real numbers. This was all in the post-transplant recovery in the hospital, so you can imagine just how discouraging that would have been. This is hard for me to write because it could happen to anyone affected with cancer, but it was suggested that they call family members to say their good-byes. That…is just heartbreaking. But. One morning, the numbers came back and…THEYWEREZERO!!! Miracles happen, my friends. Keep the faith and never give up. 


So that pretty much brings you up to speed on where the family is at. In other news, I’m just about to start the Phase II of my fundraiser and awareness campaign “Monsters Against Myeloma”. If you’ve been following the blog, you’ll probably know what it is :) Someone had heard about our cause and very graciously donated their own tickets to Lady Gaga’s concert in Salt Lake City in March. So i’m supersupersuper excited (and supersupersuper busy) to get this thing up and running ASAP, hopefully by the start/middle of next week! I plan on contacting the media within a couple days to get the word out. So if any of you, my beloved readers, know anyone in the Salt Lake City area wanting to go to a Lady Gaga concert (c’monnn, who WOULDN’T?!), please let them know about our event! I realize fundraising can seem a bit daunting sometimes, but our last winner from the summer won two tickets with $250 dollars raised (most of our donations have come from those just wanting to support the cause). It’s a lot of money, but also very do-able! So we’ve got that in the works. I also am in the midst of applying for any sort of volunteer position at the Edmonton Cross Cancer Institute, just to show my gratitude. Over the course of my mom’s treatment, the volunteers and nurses really were the unsung heroes. I cannot even begin to tell you how much these men and women do, how much love and care pours out of them. While doctors are amazing, these people are truly the faces of care and treatment and are severely underrated in our society. So I really want to try and give back to the community to show my gratitude and help others who are going through what I went through just over a year ago. If any of you, my readers, have not been directly affected by cancer, I would highly recommend volunteering at a local cancer center. Yes, it will be very uncomfortable at first. I remember the first day we went in for treatment. Dear lord, that was horrible and very unsettling. But you get used to it, as with all things, and have the opportunity (because it really is an opportunity) to meet the most amazing and courageous people, and have your lives changed. Forever. 
Either than that, school is keeping me on the hustle as usual, studying lecture notes (yeah, right), looking for internships, and getting involved. BUSYBUSYBUSY! 


Hope all is well with you, my readers.
Sending good vibes into the universe and you.

L