[MikeBParticipant]

Hi All

Recently diagnosed during diagnoses for Type 2 Diabetes – thank goodness it was found but not a great start to the year of my fiftieth!

Start treatment tomorrow on Myeloma XI so essentially bricking it at the moment.

What I have read so far has helped and I guess I am going to need more of the same over the coming months. It's great to read this stuff from the only people who really know.

[eveParticipant]

Hi Mike

sorry you are joining this club,but you will find it an experience in it self. lots to look at and lots of info here takes sometime to take it in.
My partner is coming up to 3cycle of chemo 21days of ctd myeloma x1 trial.

This site has helped me a lot,some great people on here,have a good journey

[DebsParticipant]

Hi Mike,
Welcome and sorry again that you've joined us all!
I am on the Myeloma XI trial too….did 4 cycles on revlimid starting in November, and after plateauing am now on the velcade arm for at least 4 cycles. The terminology is probably all a bit alien still for you (sorry, that wasn't meant to sound patronising!) but just ask away and folks on here are as helpful as you can get!
Have you picked for thalidomide or revlimid?
Hope it all goes well and that you don't get too many side effects….I didn't on the revlimid!
Happy 50th by the way….hope the year goes as well as possible!
Debs x

[brochoParticipant]

Hi Mike and welcome , sounds like you were lucky being picked during tests for diabetes , so many of us have to wait a long time Good luck on the trial , you will be very well looked after just dont hesitate to let them know your side-effects if you get any, doses can always be altered to suit you Heres to your fiftieth , its the new 40 you know !!! Bridget

[MikeBParticipant]

Hi Debs
Been "randomised" today (another new experience)and selected for the Revlimid arm – think thats the terminology. Didn't take your comment as patronising as I am still on a learning curve in that respect and will be for some time I think.

Your experiences sound encouraging – thanks for sharing those and your good wishes.

[MikeBParticipant]

Hi Eve

Thanks for your comments. I am sure my wife will be keen to read your comments. Hope the journey is good for you and your partner.

Mike

[MikeBParticipant]

Hi Bridget
Thank you for your comment – I really must take on board the bit about sharing side effects with the Good Guys – I am not good at that apparently.
Mike

[GillParticipant]

Hi Mike and good luck with your treatment. Gillxx

[JetParticipant]

Good luck with the Revlimid, Mike. I've found it's not a particularly nice drug in terms of side effects, but it is the NEW thing and the reaction I got from my nurse when I was randomised for Revlimid was very positive. And it seems to be working well for me!

It seems that they're basically trialing it at the first stage of treatment to prove it works better than Thalidomide, whereas it is/was being used successfully at a later stage.

[DebsParticipant]

Morning Mike,
Hope today goes really well for you…I remember being a bit manic the first day…don't think it was the drugs, just a wierd sense of anticipation of what might come! It all calmed down then!
Not sure what advice they'll give you re the revlimid, but I used to take it in the morning with my dex. I found that I didn't sleep well at all at night and used to wake every 20 mins to half hour (exhausting!). On cycle 4, I changed to taking it at night, and suddenly my sleep went back to nearly normal!

Anyway, see how you go, and if it helps, bear it in mind.

Keep us in touch with how you go.
Debs x

P.S Bridget, if 50 is the new 40, what happens to 40????? I've told Nick I expect a HUGE party so it's not allowed to diminish in importance…lol!

[BADGERParticipant]

hi mike

sorry to have to welcome you to the site but you will find your online friends here are so caring and helpful
I had type two diabetes before i was diagnosed so unfortunatly when taking the DEX I had to go on to insulin as it raised my sugars so much. Myeloma uk is a brilliant organisation they are so helpful and the line to the nurse is a god send especially at the start when so many questions need an answer

Good luck with your journey

Love Jo 😎

[kaychappersParticipant]

Hi Mike
Really sorry that you have to be on the site, but it really is the best source of information and such lovely people that you never feel alone. I started Myeloma XI trial and I am just starting 4th cycle. It took me 2 cycles to get into the swing of things and to learn my pattern, but once I was in the pattern it was very easy to manage. I just take it one day at a time and if I do feel tired or fidgety (usually on the Dex!!) I just go with it. Listen to your body its knows best 😀 Stay in touch. Everyone here has either been through it, going through it or will go through it. I find it so helpful.
Kay x

[DebsParticipant]

Hi Mike,

Just thought I'd see how you were doing as you must be into your second week of revlimid now? How has it been? Any major side effects? Meant to mention that your taste will probably go up the spout…but you probably know that by now! I remember my consultant saying I could have a glass of wine if I wanted but that I wouldn't…didn't believe a word that she said….until it happened….have never drunk so little in my life apart from when pregnant!!

Anyway, hope that you're not suffering too much and keep in touch on here if you need any help or support. It's what we're all here for.

All the best
Debs xx

[MikeBParticipant]

Hi Debs

Not been on the discussion board for a while as I found I needed to get my own head around things. First cycle went better than I could ever have hoped with just the, what seems to be usual, side effects of the Dex.

I am almost a week into the second cycle now having just got passed the first 4 days of Dex again and it feels a little harder than the first. I am not aware of any down side with the Revlimid yet so counting myself lucky. The fingers are tingling a bit but at least that makes the blood tests for diabetes less painful – a bonus.

You are spot on with the taste bud thing. I have found that Kriek Beer (cherry) is the nicest tasting but am willing to take advice on further options. Not drinking much these days either which feels strange…

Hope all is going well with you and I will be keeping in touch more going forward. Going to take on Kay's matra and let my body make the decisions, it seems to know better than me..

Mike xx

[DebsParticipant]

Hi mike. I,m not surprised that you took some time out…there's a lot to take on board at the start. I'm glad to hear it's all started off ok though! I'm now on velcade but have a feeling it may not be respondig much now. Got 3 cycles from revlimid and looks like it could the same with the velcade. Find out more in a couple of weeks. How did u respond to your first??

Catch up soon
Debs x

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