[Ali1Participant]

My husband was diagnosed with myeloma at the beginning of August completely by accident! He had been ill for about a yer and the hospital were testing for something else when the ct scan picked up the symptoms in his spine. We aree lucky in the it has been caught really early. I should say that he is 48 and I am 46. He is currently reacting really badly to coming off the steroids after his 4 days on. I just wondered if anyone else had any problems here.g

[TinaPParticipant]

Hi,

I think most people have problems coming off the steriods after 4 days. I call them my 'douvet days'. I just wanted to sleep all the time. It's a really good drug, but the side effects are not good.

Hang on in there.

Tina

[Ali1Participant]

I'm sorry you suffer too but it is reassuring to know he's not the only one. How long do your 'duvet days' last?

[jmsmythParticipant]

Hi Ali

Sorry you have had to join us but this is the best place for support, to rant and for friendship. My husband is just starting his 4th cycle of CDT and the withdrawal of the Dex is by far the worse. His consultant tried to wean him off it, but for Frank, it just prolonged the withdrawal, so back to cold turkey. His first month was the worse. He said it was like someone else had taken control of his body. I think maybe his body has got a little used to it, as now, although not pleasant, seems to handle it a bit better. He had hic coughs which nearly drove him crazy, but natural yoghurt seemed to help him.

I hope all goes well with your hubby (his name??). It take some time to get your head around this illness but as I say you are in the right place.

Take care
JeaN

[tomParticipant]

Hi Ali

Sorry you and Hubby had to join us motley lot 🙁 but you will find us warm/welcoming and more importantly friendly and informative 😎 (cept me am thick lol)

The Dex is a great drug for most of us and for all of us its the little devil as a small pill.

Hope you all go through this MM journey with as little problems as can be.

Love
Tom "Onwards and Upwards"
Where abouts will Hubby be treated Ali as that will help id its same as others on here to give you both the run down 😎 xx

[MicheleParticipant]

Hello and welcome.

I was diagnosed in May 2011 when I was 49 and like your husbands, my MM was picked up via a bloodtest for what I thought was a disease I'd caught on holiday in Australia where I was bitten by loads of mozzies.

I had 6 cycles of CTD. It wasn't an easy time but I can assure you that it was all worthwhile because the drugs did their job.
I kept a diary during the cycles and it proved to be very useful and soon showed a pattern meaning that I could predict when my rubbishier days would be. The steroids made me feel very tired and as though my limbs were made of lead. Some days I had to drag myself up the stairs.

The good news is that virtually all the unpleasant side-effects are temporary and it is worth "toughing it out."

I really wish you well. My husband was a model carer. He did lots of research about MM and made sure I ate well, kept active and most importantly…kept me smiling! 🙂

[Ali1Participant]

Hi jean

I'm sorry for your husband. His withdrawal sounds a lot like Kevin's (my hubby). He is suffering with anxiety states and this is only his second withdrawal. It seemed to get bad quickly. I hope that like your husband he learns how to cope and I take reassurance from your message. Thank you.

[Ali1Participant]

Thanks for the kind welcome. I have felt better and less alone since reading these messages. Hubby is being treated in Brighton.

[jmsmythParticipant]

Hi Ali

We are just coming to the end of the third month and don't get me wrong it is tough but as others say (I hope) it will be worth it. Frank takes the Chemo tablets every Monday. He was told to take the in the morning but they made him feel anxious and 'funny' for about 18 hours. So on Monday week ago he decided to take them late on Monday night so he could sleep through the worst of it. It seemed to work. This Monday he did the same and he felt so much better, we spent yesterday shopping together. That was a first for 3months. I did check that it was ok and they said with that drug he could take it when it suited him. We only have 3 months to go so fingers crossed. If only Dex withdrawal could be sorted, but as Michele says it will be 'worth toughening it out'

Regards to Kevin and look after yourself
Love Jean

[VickiParticipant]

Hi Ali,

Welcome! My partner Colin was diagnosed in October 2011 following a random blood test and a bad back. Colin and I were completely shocked because until that time we had never heard of this condition!. He was 55 then and I am 45. The good news once we came to terms a little bit with what we had heard was 7 cycles of cyclophpmasmahide, dexamethasone and revlimid put Colin into remission, with a SCT planned for 24/9/12.

Colin did not like the dex… It made him a bit moody or tearful and he had real problems with his sleep pattern. I get the impression from this forum the drug does have some side effects. He also had terrible hiccups.but the positive was that the treatment has worked!

Best of luck

Vicki and Colin x

[PeterJamesParticipant]

Hi Vicki & Colin
I was diagnosed with MM this June, again by accident from an unconnected blood test for my PSA
I have to say steroids are great , all my arthitic pains go, also get somewhat hyper/ aggressive, god help anyone who cuts me up on the road!
Then for the following two days after steroids, tired & rundown , but all in a good cause
I find masses of plain choc digestives helps, washed down with cake & ice cream
Just started my third cycle of CTD, to date PP down from 46 to 10, which i hope is good.
I don't get hicupps, just diabolical wind , doesn't bother me but my family are about to evict me.
The main down side for me is my PSA reading which has been up & down for many years, but never more than 11, has gone up to 18 in the last three weeks,any male got experience of this ?
All the best
Peter

[BADGERParticipant]

Hi Ali
welcome to the site sorry you have had to join it must have been a terrible blow to you both this site is wonderful for help and advice and as for the DEX we have invented a new word here for it DEXITUDE I think most people find this drug hard to deal with but at least it usually has the desired effect on the beast called Myeloma good luck with the treatment
jO

[Ali1Participant]

Hi Jo

Thanks for your kind welcome. Both Kevin and I have found great reassurance in all the kind comments. As we are new to this it's hard to know what is 'normal'.

Ali

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