[andygParticipant]

Good luck today Tom as you set out on the next stage of your journey. I hope everything goes to plan and you are drug free again soon.
Don’t forget to keep on taking your vodka.

Every day is a gift
No matter the weather.

Andy xx

[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

[andygParticipant]

Hi David.
The new site is having a lot of teething troubles. Stuart the web master is looking into them. He has a discussion page on the off topic forum and I know he is looking into the editing issue.
I get a cough and hiccups when I take my Dex I always have. I have to be careful when I drink as it sets me off hiccuping. I sometimes seem to choke on nothing! Hence the coughing. And of course the sleepless nights and mood swings.
Glad your planning to get away because I think the breaks do Steph and I a boost and a world of good.

Every days a gift.
Gratefully received.

Andy

[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

[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

[andygParticipant]

Hi Tina
Sorry read you were unwell over the holiday period. Good to know it was only a short stay in hospital.
I hope you have a good 2014

Every day is a gift
Live it to the full

Andy xx

[andygParticipant]

Hi Harmony
First off you could smoulder for years yet so try not and jump the gun. It’s easy to say but hard to do but you’ve got to live in the present not the future. As Eve says worrying about tomorrow spoils today.
I have no experience of counselling though my wife went and found it very helpful.
I was diagnosed in oct 2011 told MM was very treatable but not curable. Well my MM proved to be awkward and has proved difficult to treat. I’ve now been on full chemo for over 2 years now as they struggled to find a drug to work for me. I ended up on Revlimid for nearly 2 years but that has failed now and I have just started on Pomalidomide fingers crossed that works.
My attitude is take everyday at a time. I know what’s coming I just don’t know when. I found when I was first diagnosed the more I talked about MM the more comfortable I was with living with it. It gets it straight in your head. I think the mental side of MM can be harder than the treatment side initially.
I never smouldered and don’t have children to worry about but even though I’ve never gone through counselling myself I would recommend it to you. I think it will help you focus on the things you can influence and hopefully try and ignore the thing you can’t influence.
I hope you stay smouldering for many a year.

Every day is a gift
Even in the rain

Andy xx

[andygParticipant]

Hi Sarah
I was told to avoid certain foods too. I even think there’s a list on the MyelomaUK site of foods to avoid. As you say it’s pretty much the same advice given to pregnant women. Ie no live foods no unwashed or unpeeled fruit and veg and sea food is best avoided. The advice is given because we MMers have low immunities and a stomach bug is a serious problem to us.
It’s ok saying I continue to eat normally and nothing has happened to me BUT if you do come across some “bad” food the consequences could be dire! Everyone is different some choose to play Russian roulette with their health ie smoke, drink excessively, do drugs and get away with it others don’t and get struck down. For me I follow the advice I’ve been given on food because MM is bad enough without taking unnecessary risks.
With MM you don’t normally die of MM but of infections.
Rant over 😉

Every day is a gift
Make the most of them

Andy xx

[andygParticipant]

Hi Stuart.
Mine is the same operating system as Liz’s.

Andy.

• This reply was modified 10 years, 10 months ago by  andyg.

[andygParticipant]

Hi Jean
The edit button is to the left of the reply button – oh it’s not there now!
Hmmm maybe you only have a limited time to edit posts on a iPad.
Time to dust down the laptop again?

Andy x

[andygParticipant]

Hi Stuart.
Me again 😉
I’ve just done a post posted it and when I reread it I spotted a mistake and when I tried to edit it I found the whole post disappeared in the edit box when I tried to edit it!

Andy

[andygParticipant]

Hi Stuart
Sorry to say the new look website still isn’t a great experience on an iPad. I very rarely use my PC or laptop now as all of my internet browsing is done via my iPad. The scrolling issue has improved since my last post. I managed to sign in today but when I went to the newcomers posts I was signed out! so could not contribute.
I’m not one to hark back to the “good old days” but I will make an exception here.
I’m sure it’s probably only a problem on iPads or Safari but in my opinion PC’s and laptops have had their day and smart phones and tablets are today’s tech for browsing the internet.

Frustrated Andy

[andygParticipant]

Hi Stuart.
The new web site looks great.
Now the bad bit. – I find scrolling through the posts on the forum very slow and it’s very difficult to edit a post. I’m using an iPad. I haven’t tried it out in my PC yet though I will give it a go when I’ve dusted the cobwebs of that ancient piece of machinery.
I’m not blaming your work just wondering if it’s an iPad thing or a my iPad thing and I need to ask Santa for a new one for Xmas 😀
Thanks

• This reply was modified 10 years, 11 months ago by  andyg.

[andygParticipant]

Hi all
Got this message from Becky Crowther via Facebook.

Andrew Godfrey please let everyone know in the our Dai group on Myeloma site that my brother made a speech today and he read out some of the beautiful posts from there, you were all mentioned and very much thought of today…all our love to you all xxxxxxxx

• This reply was modified 10 years, 11 months ago by  andyg.

[andygParticipant]

Hi Tom.
I already knew of your sad news via Facebook. I’m not going to tell you how everything will be ok and how great Velcade is because you know better than most, excluding the medics, the pros and cons of most treatments.
You’re one of the longer serving fighters on this forum and I wish you well in the next phase of your battle and that you’re around for a long time yet sharing your experiences and humour.

Wishing you all the best mate.

Every days a gift.
Onwards and upwards.

Andy xx

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