[andygParticipant]

Hi everyone.
I hope you all had a good Xmas.
Here we are in 2014, something I didn’t think I’d be saying a while ago, looking forward to what it’ll have install for us.
For me it’s a new drug. I start on Pomalidomide today as my consultant finally convinced me that the Revlimid it was on was failing in it’s job.
So my coasting along of the last few months has come to an end and now I’m facing the choppy waters of uncertainty again. Will it work? What side effects will I suffer? Etc etc.
Anyway we’ll see how it all pans out and if the choppy waters make me a little sea sick I’m used to that and I’ve always got my little pills to fall back on to.

Wishing you all a healthy 2014

Every day is a gift
Even in this weather

Andy xx

[meganjaneParticipant]

Hi Andy,

Happy New Year to you and Steph. I hope the uncharted waters of Pomalidomide are kind to you and that side effects, if any, are minimal. Keep us posted (when the forum lets you!) and fingers crossed for a good result.

Megan

[bandityogaParticipant]

Hi Andy

Had a nice Christmas and New Year at home with friends and family.

Hope you enjoyed the festive season and that the new treatment will work to give you some remission. Ian,s ChristmasFLC now 583 so BMB scheduled soon and more cycles of CTD.

Stay positive and yes every day is a gift.

Maureen x

[DizzylizParticipant]

Hi Andy,

I see revlimid as come to an end, I hope the new treatment works for you and you and Steph continue enjoying your trips in 2014! I was wondering if there’s anyone on the forum also on this drug pomolidamide? Kev is on cycle 13 of revlimid and in the beginning had a rough ride with various side effects, he now seems to have settled down but his last lights chains had risen slightly from 10 to 15 but the drs seemed unconcerned, I’m hoping this is just a blip,
Hence the reason I’m curious about pomolidamide.

Happy new year to you Andy and Steph

Love liz & kev xx

[tomParticipant]

Hi Andy and Steph
Well you both know how i feel for you two but am sure it wont be long before you are coasting alone and waving to me as you pass Sunny Scunny on many of your jaunts away, I also know you both will stay strong and fight this reroute that has been thrown your way.

Love to you both

Tom Onwards and Upwards xx

[mhnevillParticipant]

Hi Andy

Happy New Year!

I do hope the new treatment works for you. It has very good write ups which is why NICE has agreed to fund it. I think it is related to Thalidomide, but I might be wrong. You are another front runner for us all.

All blessings.

Mavis

[HelenParticipant]

Hi Andy
As I’ve finally managed to login again! I wondered how you and Steph and the pomalidomide was going? I’ve not gone back to work yet…. Got shingles for Christmas on top of the numb Velcade feet! Fortunately all is resolving now.
Love Helen

[andygParticipant]

Hi All.
Thanks for all your good wishes.
I’ve finished my first week of Pomalidomide and yet have no complaints – well except for the usual Dex effect! My bloods were ok Friday but it’s too early to start counting my chickens yet.
It’s strange even though Revlimid had run it’s course I have been feeling the best I have these past 8 months since diagnosis in Oct 2011.

Liz I managed 22 cycles of Revlimid my PPs went from 19, where they had been stable ish to 25, then 35! Before falling back to 29 this happened over 6 cycles and my consultant convinced me it was time to move on to Pomalidomide. Though she did say Revlimid was still having an effect and we could go back to it if need be.
Only got 2 trips in the diary to date Liz – March the lakes and May Kefalonia(got to use up the left over euros from our trip to Belgium in December)

Tom welcome back from your sunshine break I’m sure you and Elaine had a blast.
I actually feel like I’m coasting at the moment Tom nothing major troubling me at the moment. Gave a wave on our way home from Nottingham on the 29th Dec but I think you were too busy to wave back 😉

Mavis Pomalidomide has not been given NICE approval yet and is only available through the Cancer Drug Fund. You are right about it been related to Thalidomide. Both Revlimid and Pomalidomide are derivatives of Thalidomide.

Helen it’s good to see you back on here. I think there’s been a lot of problems with the new format of the forums and Stuart is toiling away trying to fix them all.
Sorry that Santa brought you shingles for Christmas you do seem to be getting everything thrown at you. Work! I know your looking forward to getting back but why not just wait a while till the weather gets warmer. I haven’t worked since May 2010 can’t say I’ve missed it much though I do miss the social side of working.

Hmmm a long post that can only mean one thing – It’s the Dex Effect

Steph and I had a good Christmas and a quiet New Year We hope everyone gets what they wish for this year. Get those holiday brochures out!

Thanks again for your good wishes

Every day is a gift.
Cherish them.

Andy & Steph xxx

[PerkymiteParticipant]

Best of Luck for the new Drug, what do you take with it, Dex.

We are planning a trip to London in early March.

kindest regards – vasbyt

David

[andygParticipant]

Hiya David.
I hope your doing well with your treatments. I’m trying to catch up on everyone because it’s been difficult to get onto the forums lately.
The regime I’m on now is Pomalidomide for 21 days then 7 days off. With Dex taken on days 1,8,15&22. I have to go in for blood tests every week for 8 weeks to make sure I’m coping with the Pom and it’s not causing any bad side effects.
I still take my anti drugs ie antiviral, antifungal, anticoagulant & antibiotic plus adcal so I still rattle.
I do hope the Pom & Dex works without the addition of Cyclophosamide because I’m not missing the 2 or 3 days of nausea that causes.

Every day is a gift.
Make them count

Andy

[VickiParticipant]

Hey Andy and Helen

Great to hear from you….despite the technical problems you are often in my thoughts. As on other posts we have been busy relocating Colin’s mum nearer us. We are hoping for a holiday abroad soon, Colin’s next appt is 5th February so if all goes well there we are off…..somewhere pending travel insurance issues and as long as the doctor says ok. Sorry you are on another treatment Andy but you’re doing great and obviously doing lots….

Helen, take your time back to work, wits the rush 🙂

Vicki and Colin x

[HelenParticipant]

Hi Vikki
Good to hear you and Colin are going to go away, can’t do enough holidaying in my opinion, I must go and book one since we are talking about them!
Love Helen

[DizzylizParticipant]

hi Andy,

hope every things going well, i see your going to the lakes soon, mine & kevs favourite place and cornwall! so if we don’t manage to get abroad thats where we’ll be booking. i see you mention nottingham do you have family or friends here? as thats where we live, was it you who mentioned in the past attending the nottm beer festival? sorry if I’m being nosey.

love liz & kev xx

[AntarParticipant]

Hi Andy
Hope all goes well with the new treatment have a happy and Healthy 2014

Best wishes Dave

[andygParticipant]

Hi Liz.
My wife is from Grantham and has a house in Nottingham. So we go there quite often. Yes we go to the Nottingham beer festival when I’m fit enough it was a very wet visit in October.

I’m on my third week of my first cycle and as yet no major problems with side effects. Got the usual Dex effects – sleeplessness and moodiness

Every day is a gift.
So enjoy

Andy xx

[Author]

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