Blame it on the Dex… and other effects

The joys of Dex!

I’m now off all medication – not even taking any vitamins or supplements – I just wanted a break before the next round of treatment and medication starts. I started writing this quite a few weeks ago and am determined to post it before it becomes totally out of date. It’s also important for me to record how this phase has been, especially as it’s been quite an enjoyable phase.

The day I began writing this, I was in bed, wide awake at 5am, after not sleeping all night. Admittedly I was very tired at that point, which is pretty good actually. Often I couldn’t even start off sleeping and stayed awake all night. To counter the insomnia effect, when I went to bed I would sometimes lay down, breathe slowly and deeply, breathe all the way down to my toes and gradually relax each part of my body upwards from there, like a gentle meditation… Sometimes it worked, mostly it didn’t.

In March I went to Liverpool to visit my mum. I’d barely slept the previous night, so I planned to get some shut-eye in the car. Hahaha… think again! I put the seat down, popped a cushion under my head, closed my eyes (I wasn’t driving by they way!)… and proceeded to write in my head not just one, but four different blog updates, this being one of them. 🙂

That night I couldn’t sleep again, so my mum gave me half a sleeping pill. Yes, I know you’re not supposed to do that, but I was desperate. She was worried it might hit me on the way upstairs to bed. Ha! No such luck! There I lay, fully expecting it to kick in, for almost an hour, before giving up and going down to the couch, where I stayed awake till around 7am. I finally managed to sleep for about three or four hours. Fortunately, my mum left me to sleep, probably appreciating the peace and quiet… even I can’t talk while I’m asleep. Later that day I felt sleepy and dizzy, so I slept in the car on the way home and then managed a full night once in bed. Phew! This was a regular pattern over the past months.

On the Monday following the Liverpool visit, I was back in clinic and found out that I was slightly anaemic again. It was due to the Velcade but I’m sure the lack of sleep played its part in making me feel weak. I mentioned the insomnia to the registrar, who issued a prescription for sleeping tablets. I only took one once, but it was comforting to know I had them in case I got desperate again. Mostly I tended to sit up and play on the laptop, writing my blog, chatting on FB with friends on the other side of the planet, or other insomniacs. It’s a very exclusive club!

Needless to say, not sleeping had an impact on my mood, on top of what the steroids do anyway. Yes, there is a cost to all this hyper energy… I was frequently irritable – I felt like the little girl who had a little curl right in the middle of my forehead. When she was good, she was very very good and when she was bad, she was horrid… I could see it was difficult for those around me.

Actually when I was good, I WAS very very good. The steroids made me very buoyant, energetic, upbeat, creative, softer and more compassionate. A number of family members commented that I softened a lot since the diagnosis. I think it was easier for people to get closer and I saw myself being kinder and less judgmental, more allowing for human failings – in myself as well as others. Sadly, I can feel that that attitude is already fading…

If you’ve read previous posts, you’ll see that I was hyperactive and full of ideas, plans, projects and numerous trips away. Given that I wanted to make the most of this time, it was ideal. I had the ideas, the desire and the energy to do all sorts of fun and creative projects and visits. The last of these was five days in Paris a couple of weeks ago, just as the effects of the final dose of steroids were trailing off – perfect!

On top of the insomnia and high energy, I also had a huge appetite – for life yes, but also hugely for food – I was eating ravenously and constantly, gladly trying all sorts of new foods or things that previously I didn’t like or didn’t want to try. It was gastronomically a very interesting and exciting time.

One evening, I went to a benefit with live music from The Very Good Rock ‘n’ Roll band – a group of women who play Elvis Presley covers with a lot of humour and high energy. Thanks to Dex, I was able to dance my socks off all night. That was a lot of fun!

I have been taking a college course – a short qualification in teaching/training adults, for which I had to complete a number of written assignments. However, while I started out very well, as time went by, I found myself less and less able to concentrate… You may have noticed a distinct silence on the blogging front for several weeks… This too is a side effect of the steroids – a fly-away mind has made it hard for me to read, write or think in any kind of cohesive manner.

Many people are aware that an effect of taking steroids is a puffed up, round, “moon-face”. I got that too – not only a puffed-up face, but also my body became more rounded – not just from taking steroids, but from the extra food I was insatiably eating. Finally, I put on some weight. Fortunately, on the vanity front, I’d lost so much weight previously that the addition of a few kilos really wasn’t a problem. Apparently, I could take it… well, that’s what I was told by kind friends.

_ _ _ _ _ _ _ _ _

When I was taking Dexamethasone as part of the initial treatment last year, along with Revlimid and Cyclophosphamide, I couldn’t understand what other people were complaining about when they talked about Dex. I was a bit hyper, sometimes didn’t sleep much, talked a lot and occasionally went on spending or mad creative sprees, but it was tempered by a completely different regime, where I took a high dose of Dex over four days and then had a break of ten days before the next dose. This meant that I was high for 4-5 days, but then had time to return to calm.

During the past three months, I was taking the steroids at a lower dose, for two days followed by a day off, then two days and two days off: Mon, Tue, Thu, Fri, then Mon, Tue, Thu, Fri, then a week off, but I didn’t come down much in the week off. I didn’t seem to have any time to come down. I just about noticed a slight sense of calm on the final weekend of the week off when I had to start it all again on the Monday.

Two of my myeloma friends said they were completely wiped out from the Dex/Velcade regime. During the weekend and week off treatment they crashed – took to bed and couldn’t do anything. It seems I tolerated the treatment remarkably well, if somewhat erratically. At least their bodies had the chance to recover, to sleep and regain a sense of calm. I just flew from one drugged period to the next, constantly full of ideas, energy, mania… it took quite some getting used to.

I really can’t complain, because for the most part I loved it, even though towards the end, I adapted more and more. During the last cycle of treatment I was not nearly as wired as I had been and slept fairly normally. I began to feel a little nervous about going back to normal once that phase of treatment came to an end.

It’s official! It has now come to an end and here I am in non-steroid mode. It’s strange – I began to take my steroid self as normal and now I feel a bit flat, empty, slightly depressed. Actually, I’m just normal… well, normal-ish! I seem to be sleeping much longer than usual and eating less – less interested in food, probably not helped by the stomach cold I had after coming back from Paris, which I’m still getting over.

Velcade issues

There were some questions from fellow Myeloma patients about why I couldn’t fly while taking Velcade, so I asked the consultant… It was due to my low platelet count. The day she advised me not to fly was the first day of a new cycle of treatment, when my platelet count needed to be at least 50, but was only 49. She decided to go ahead with the treatment as I was just borderline. But with low platelets, I bled very easily – the slightest scratch bled copiously due to lack of clotting. Flying without the ability of my blood to clot, I would have been at risk of a brain haemorrhage. I hope that answers that query.

One day, I knicked myself on a sharp knife while doing the washing up. It was the tiniest clean cut and I cleaned it, dried it, held it up for a while and still it poured, lovely rich red blood trickling down my finger, into the sink, onto the floor. I tried a plaster, but it got wet and fell off, so I administered a home-made plaster of tissue paper and sellotape. Since then, I have carried plasters everywhere with me, just in case!

The thing with side effects is that not all of them necessarily happen to everyone. With this disease and probably others too, everyone is different, everyone responds differently and although we’re constantly learning from each other – not just from the consultants, we can’t make any assumptions about how we might respond just because someone else has had a particular reaction.

Some patients respond to Velcade with low energy and lethargy, which the steroids make easier to bear, but as mentioned above, they need a lot of sleep to recover. Others have horrendous problems with peripheral neuropathy – sometimes lasting many months after treatment finishes. Peripheral neuropathy can be anything from warmth and tingling to acute searing pain in hands and feet, sometimes even preventing the sufferer from fastening buttons, gripping things or walking. It is a known issue, so every time I went for Velcade treatment, I had to complete a detailed questionnaire about levels of tingling, pain, difficulty using my fingers and walking. Fortunately, I’ve experienced PN in a very mild way – slight tingling and warmth in my hands and feet from time to time – really not problematic or painful and in fact sometimes quite pleasant. If it had become an issue, they would have stopped treatment for a while or if necessary, permanently.

Finally, a strange “side-effect” of treatment… I’ve been going to Daycase twice a week every two weeks in three for the past twelve weeks and have gotten to know the diligent, caring and hard-working nurses and them me and my difficult veins – the subcutaneous injections of Velcade are still being authorised, so too late for me. So, it’s the end of an era and I am experiencing the sadness and fear of farewell, change and new challenges.

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4 Responses to Blame it on the Dex… and other effects

  1. Lorna says:

    Mike still misses those twice weekly visits especially if he is feeling particularly tired as he worries he might be anemic (which he never is at the moment). Someone else once blogged about the sense of being left on a raft in the middle of the ocean once treatment is over. That’s how Mike feels.


    • Yes, I can relate to that abandoned feeling from last autumn after recovering from my auto transplant and achieving complete remission – a sense of bewildered surprise and “what am I supposed to do now?” This time I don’t have that ‘being left’ feeling, as I will be back for the allo transplant in a couple of days. Then I’ll have to go in twice a week to check on the immune suppression drugs and prophylactic antibiotics, so no chance to feel abandoned. It was just the sadness of letting go of a familiar routine, I think.

      To be honest, as well as nervousness about what’s to come, I think some of my low mood reaction is from coming down off Dex.


  2. Catriona Yule. says:

    Thank you Jet…another great blog!


  3. hope your normal moods won’t be too down beat, i understand how you had the energy to go here there and everywhere now, it made me tired just reading about it!. You seem to be responding to your treatment without too much difficulty and side effects. I sleep a lot and could do more, if life let me, i am tired all the time. wish i could have some umpth, maybe if the sun ever comes out it might help motivate me. I just want to sit around doing nothing – but i don’t as i have my job to go to and a f…. house to maintain. Love reading your blogs Jet, hope you feel bettera and bettera as the days go by. See you somewhere soon(ish) i hope. Love Pauline xxxx


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