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Gavin 13 years, 9 months ago.
Hi there!
I thought I'd share my side effects experience here and see if anyone else relates to it…
I was diagnosed on 4 Feb and at 49 years old, was immediately put on an intensive treatment, starting with four days of dexamethasone and then an every other day dose of 15mg of Revlimid, which I have to take for 3 weeks, then one week off before the cycle recommences.
The side effects I experience are as follows:
– dry mouth and skin, especially my lips chapping
– shaking/trembling internally
– severe clamp-like headaches
– dizziness
– a bitter taste in my mouth which affects my appetite as everything tastes bitter/wrong
– tingling under the skin, mostly in my hands, feet and around my mouth and nose? a bit like being constantly very mildly electrocuted, or the feeling when a dentist?s anaesthetic is wearing off. To me it feels like when you shake a bottle of pop and it just waits there fizzing before you take the top off.
It is these side effects which are making life really tough just now, although my specialist nurse keeps reassuring and promising me that the first 8 weeks are the worst and it will get better.
It'd be good to hear from others who've gotten over what I'm going through.
If anyone is interested, I am writing a blog about my experiences of living with myeloma. It feels very therapeutic at this stage: http://jetblackliving.wordpress.com/.
Dear Jet – sorry you have succumbed to the beast but welcome to our website where I am sure you will find help as you go through treatment.
It's an interesting combination and one I haven't heard of before. Alternate day revlimid with dex. It sounds like your docs are working out a treatment best suited to you and one thing you will find out is that our individual form of treatment depends very much on our type of myeloma.
I have checked your side-effects against my own and there is a link there with most of them.
The dex and revlimid can make you dizzy and the dex certainly is responsible for the shaking/trembling. I can barely write when on dex and the drugs affect our mood in all sorts of ways. The taste is either due to revlimid and/or dex but we haven't quite decided other than it's not welcome! The tingling sounds like peripheral neuropathy associated with revlimid so tell you nurse specialist just to check it out.
It sounds like you are experiencing most of the associated side effects as we have, and we are still here, so keep moving on!
Good luck Jet – we will be thinking of you.
Love, Gaye x
Hi Jet sorry you have had to join us but welcome to the most supportive group ever! I am on my first cycle of Revlimid too and I have been struggling Like you I am on Dex for four days, 20mg a day, and 25mg Revlimd daily over the three weeks Most of the side-effects you describe can be put down to dex but I think they are magnified when taking Rev as well As Gaye say though we are still here and as much as I loathe dex it does do the job Like you I was told the first month is the worst so I am holding onto that thought! One thing I have found , following Mins advice, is to take the Rev late at night , it doesnt knock me out just means I can stay awake a bit more during the day Keep on going !!! love Bridget x
Hi Jet,
You poor thing you certainly are going through the mill.
Your progress is very similar to my husband's who was found with kidney problems first,( read you blog)you are lucky though as it took a further 4months with kidney people before he was diagnosed with mm.
He is also on Revlamid and dex, having just finished his first packet.
It sounds like the dex is giving you most of your problems. It really is the devils drug. But make sure you take it early in the morning and then you can sleep when you need to. If possible have a really hearty breakfast on the dex days. I got into the habit of [b]big[/b] bowl of porridge or a good english breakfast for Peters dex days and its not too bad and sleeps like a baby at night. and in the evenings and afternoons LOL.
If you find you cant stand the side effects ask to have your dose halved until you get used to it. But then again if your on a trial possibly cant do that.
He seems to have settled down now but will know more when he starts his second course on Tuesday. the first two weeks he was totally washed out and ill but got better daily. His kidneys had once got better on Thalidomide but worse when he was on velcade now its different each day so don't know what will happen next.
I hope all you problems with the drugs side effects start to settle down, more importantly hope you have a good response to them.
Good Luck
Min
Very interesting to hear from others, but I have a very different experience from most, it would seem. I love my Dex – it makes me feel almost well. I managed to drive an hour from Nottingham to Sheffield to visit a friend's ceramic exhibition yesterday, had a good chat with her and visited a wood firing taking place on the way back and then ate quite well and "tastefully" in the evening.
My hair looks better, my skin feels less dry, I have more energy, less back pain, possibly even less tingling, less anaemic breathlessness… and I feel happy and funny. Lot of laughing yesterday. It also makes me unable to sleep, but it's not a bad insomnia and I have a Facebook friend who is often also awake, so we chat and I catch up with emails and my blog. So, all in all, I quite like the Dex, so far.
For me, the nasty stuff is pretty much all down to Revlimid. Good to have a word for the tingling… peripheral neuropathy. My mother experienced that earlier last year, when she had some difficult health issues and I think my uncle seems to be having it too, for some reason. So it seems to be the "in thing". LOL!
I'm hoping as time goes on, I can find a rhythm with it and be able to plan activities to go with my drug swings. So, do exciting big trips on Dex days and chill out and sleep loads at other times.
I'm wondering what I'll feel like on my week off everything… well, everything bar the paracetemol, ciprofloxacin, aspirin and lansoprazole! LOL! They're all my "benign" medications… all pretty, white and friendly!
I'm hoping the fizzing will go and I will want to eat good, tasty food and hopefully lots of it, to put back the way too much weight I've lost. Bottom – gone! Cycling calves and thighs – gone! Breasts – diminished! Clothing – hanging off me! Boo hoo!
Enjoyed your blog. You seem to be the other end of the spectrum with regard to Dex.
I had bags of energy on it but had to give up any thought of sleep the night I took the tablets, normally Fridays.
Cannot say I noticed a weight problem although I note several of the ladies complain of putting it on. At the moment, having just finished my SCT in Dec, I am not on any anti cancer drugs, anti-Viral, anti-biotic, disodium Clodronate and the old blood pressure tablets but no cancer med! I see my consultant on Friday who hopefully will tell me I am cured and I can now go partying again! I should be so lucky.
Kindest regards
David
Hi David
Been following your journey as I am on the same route. Very best of luck for Friday. Keeping everything crossed for you.
Gavin
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