[DebsParticipant]

What lovely news….Congratulations to you both, and whether the celebrations are this month, or in 3, I hope that you have the most fantastic day.

I hope that your daughters can both make it so that it is a real family affair.

I'm with Bridget, go shopping and buy lots of lovely thing….all neccessary of course (;-) ….esp those lovely shoes, beautiful necklace and wonderful bag!!!). Sure Slim can have a nice tie in there somewhere..lol!

Enjoy your day and hopefully you can post a picture afterwards!

Debs x

[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!

[DebsParticipant]

Jet,
I think you might find your figures are your lightchains rather than your paraproteins if you're talking about hundreds and thousands.
Debs

[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

[DebsParticipant]

Hi Dai,

We went to the London one last year and I have to say while I was dreading how long the day would be, it was over before we knew it, and I wished I'd had longer to go to more of the sessions!!

The only tip to making the most of it perhaps is for you to split when it comes to the split sessions, and that way you can report back to each other on what you learn. Me, my sister and my husband all went to 3 different ones so we covered all bases!!

Hope you get loads out of it, and that perhaps it can help you at the moment with all the decisions you're having to make
Debs x

[DebsParticipant]

I am so so sorry for the loss of your brothers. I cannot even begin to imagine how you are feeling at the moment and how hard this must be for you and your family.

I don't really know what else to say except to how much I will be thinking of you and your family. And remember, you don't have to come to terms with it quickly. Use this period to remember the good times and the things that you loved about your brother (s) and when you are ready you will come to terms with the bits you need to.

With many good wishes and prayers for you all over the coming weeks.
Debs x

[DebsParticipant]

Hi Keith,
So glad to hear that you have responded. Gosh it has really made me realised just how different we all are with our MM. My pp's went down from 50 to 27 on revlimid and they didn't class it as a very good response!!!

Am now on the velcade and on week 3 of my first cycle. The first two weeks were problem free bar ABSOLUTE exhaustion on certain days and an emotionalness that I didn't think I was capable of! I seem to have just developed the funny taste too and am a bit nervous I might be starting to see small signs of periperal neuropathy….the tops of my toes feel like someone has stamped on them/ burnt them…does that sound familiar to anyone?

Anyway, nothing at present that I can't deal with and even the kids are getting used to me falling asleep around them!!

Good luck all.
x

[DebsParticipant]

Made me blub too!!

Aren't kids just so special xxx

[DebsParticipant]

Dear Dai,

I've kept reading this post and wondering what to write. Still don't know but wanted to say that I've been thinking of you lots….keep that chin up as much as possible as you are a real inspiration to all of us that have read your posts over the last year or so.

Here's hoping it is a blip and they have it wrong, but if not, velcade doesn't seem to be too bad (I started 2 weeks ago) although it does exhaust at times. But so long as you go with your body on it, I am sure you will be fine.

Good luck with it all and thinking of you
Debs x

[DebsParticipant]

Hi Mark

So sorry to hear about your dad….but you've come to a great place for support and guidance.

It's hard to give any tips so early on apart from my main one would be have a chat with the Myeloma UK team over the phone as they are the experts and will be able to help talk you through what your dad may be looking at ahead of him.

As for survival rates….well you'll find different ones everywhere you look (and I wouldn't advise looking too far as most of them are out of date!). Things are looking better every year with new treatments gaining approval and research into Myeloma getting better and better. I know it's hard at the moment, but try not to focus too hard on that side of things….

Good luck with your dad and I hope that the tumour isn't giving him too much pain. Keep in touch on here and I KNOW you'll get lots of responses.

Debs x

[DebsParticipant]

How are you doing today Nigel?

Hope things are ok. I'm a bit rough, but think I'm still trying to get my head round not sleeping, and the whole emotional side of velcade that I didn't have with revlimid. Still, hopefully it will work for me more than the revlimid did!!

Debs x

[DebsParticipant]

Oh Nigel
I'm with you there- day 6 here too. Up at 6am for a christening this morning (and didn't sleep well because of the drugs and the clock change anyway). Did really well for the whole day, kept smiling and then fell asleep for two hours in the car and crawled into bed when we got home….think kids were v confused that mummy was in bed before them!

Trying to stay up for a little while to show my husband I don't desert him at every opportunity (!) but am shattered and want to go back to bed! Give me 10 mins and I think I'll be gone.

Hope you feel better tomorrow 🙂
Debs x

[DebsParticipant]

Jean,
I think Mari is right. You are better to try to get Frank to have it checked….even if he does it to keep you quiet…men like thinking that's why they are doing things sometimes!!! Hopefully it is nothing and he can turn round and tell you 'I told you so' but if it is anything that needs looking at, it is SO much better to get the hospital involved earlier.
I know it must be scary, but hopefully they'll just say it was a pulled muscle.

Good look persuading Frank
Debs xx

[DebsParticipant]

Hi Jen,
Yes they've warned me about the numbness esp in the feet – and said it's not worth carrying on and risking long term pain for the sake of lowering the pp…..sounds like you did the right thing.

Shame the revlimid not working in making you sleepy at night….took me a couple of days for it to kick in doing it in the evenings. Last night had to resort to the sleeping tablets as I just couldn't sleep at all!! Hate taking them but sometimes, needs must!!!

Take care and keep in touch
Debs x

[DebsParticipant]

Hi Jen

What great news about your pp levels – how many cycles was that on? I am hoping desperately for that to happen to me. I got hit on my second dose of velcade yesterday. Was fine till I got home and then flaked out totally and was very emotional. It was out of the blue too, as I hadn't expected anythimg much for a couple or weeks!!! Luckily some friends had the kids till my husband got back and an early night and some sleeping tablets helped….almost normal today except for the dex cheeks!!!

I've heard others talk about not having the transplant. The trial I'm on means it's the next step (although obviously I could pull out). I think if I didn't have kids I'd be tempted but I'm worried that if I wait and end up with serious issues it could affect my quality of life with them. They're only 4 and 6 so it would be good to see them a bit older before we try other things.

Good luck with the revlimid….try taking the dex in the morn, and the rev in the evening….didn't affect my sleep that way. But I think I may be a bit abnormal!!!!

Good luck Jen
Debs x

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