[andygParticipant]

Hi Teresa
Just caught up with your posts – I've not been posting long myself but have learned a lot from the wonderful and supportive members of this forum. I was diagnosed October 2011 but recently my treatment has stalled a bit. Hopefully I'll get to a sct stage soon.
Anyway a belated welcome to the forum
Andy xx

[andygParticipant]

Hi David
It's great to hear your good news it gives everyone a lift. Especially me as I seem to be stuck in a bit of limbo at the moment. I hope you cough soon passes and you can get out and about again. Though the weather we're having here is good indoors weather.
Let's hope for more good news posts
All the best
Andy

[andygParticipant]

Hiya Neelie.
First of all welcome to the forum. Not that it's a forum that one would choose to be a member of but we are where we are. You'll find it's a good supportive group with good advice.
I had to wait 18 months for diagnosis from first going to the doctors with back problems. Nearly a year spent going back and forth for pain killers and anti- spasmodic tablets. Then I really hurt my back at work last may foolishly I went home and then to the doctors instead of being taken to hospital from work. Anyway 5 months later finally at hospital I had a full spine x-ray the revealed damage to my spine top to bottom. All sorts of tests were ordered and 2 days later I was called and told to get to haematology ASAP where I was diagnosed with advanced mm 3 days before my wedding. It's been a roller coaster since then.
Don't be scared to ask any questions no matter how trivial you may think they are there will always someone able to answer or advice. Either a carer or patient.

I hope your MM journey turns out well
Andy xx

[andygParticipant]

Hi Helen
I feel fine thanks. If it wasn't for my back I wouldn't know I was ill!
I started my first REV – DEX cycle yesterday so I'm on DEX time. Feel tired during the day and wide awake at night lol. What's you excuse being awake so late?

Andy xx

[andygParticipant]

Hi Dai
The beer festival is held at Nottingham castle mid October last year it was a week after Steph and I got married and 10 days after my diagnosis. This years dates are October 11th – 13th inc. They're aiming for a thousand different beers this year :-0
Hopefully I'll be fit enough to go 😉 I've been a member of CAMRA a few years now.
Steph still has her house in Nottingham and we pop down regularly, well when treatment allows, and go to Grantham to see her dad so we pass your way quite often it's a nice area.
My consultant worked in Nottingham before she moved up here.
Might bump into you at this years festival.

Cheers [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink004.gif[/img][/url]
Andy

[andygParticipant]

Hiya Susie
Sorry to have to welcome you to the war on myeloma. You will find loads of support and advice from the happy band that makes up this forum. I was diagnosed October 2011 after 18 months of back trouble when my paraproteins were 50. I'm down to the mid 30's now but it is proving difficult to get them lower. My consultant wants me below 10 before a sct but others have had sct at higher levels. Everything is different for everyone as you will be told numerous time myeloma is a very individual disease with lots of variables – fitness , tolerance to the drugs even, as in my case, the stubbornness of the paraproteins the list is long. Your treatment will be tailored to you and hopefully it'll be plain sailing. Don't be afraid to come on here and ask any questions you can even moan and shout if you want to – you will find a receptive ear or 2 or 3 – many ears and they'll offer advice but more importantly everyone will be supportive I can guarantee it.

Keep positive and keep fighting
All the best
Andy xx

[andygParticipant]

Hi Kay
Thanks for your reply it has given me a lift knowing your pp's where high and you still got a decent result from sct.
I haven't actually drank hardly anything since Christmas and I can't say I've missed it. It was good to go out Saturday just to feel "normal" for awhile.

Cheers 😉
Andy xxx

[andygParticipant]

Thanks for all your input into the alcohol question. I will see how I get on with revlimid before I try some beer but hopefully I'll be ok because there's a beer festival at the club over Easter weekend and I wouldn't want to miss it.

[url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink055.gif[/img][/url]

Dai my wife comes from Nottingham and we go to the beer festival there most years – last year there was over 800 beers to sample! Sadly I didn't manage them all. I enjoy a pint of Reverend James when I can get it. The club I go to usually has 3 guest ales on and tries to get new ones every week.

[url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink005.gif[/img][/url]

Cheers – hic
Andy

[andygParticipant]

It worked

[url=http://www.easyfreesmileys.com/facebook-smileys.html][img]http://www.easyfreesmileys.com/smileys/free-random-smileys-741.gif[/img][/url]

DEX is good for something lol

[andygParticipant]

Hi
Here's my attempt from an iPhone.

[url=http://www.easyfreesmileys.com/facebook-smileys.html][img]http://www.easyfreesmileys.com/smileys/free-random-smileys-1006.gif[/img][/url]

Andy xx

[andygParticipant]

Hi all
I start my next round of treatment today! So last night we went out for a drink for only the second time this year 😉 We saw a good band and I had several pints of real ale 🙂 We've come to the conclusion we're going to live life as much as possible or as much as my back will allow.
Planning to take a trip to the lakes later in the month as well. To celebrate being married for six months, we went there after our wedding, and Steph's birthday.
Don't know if I told you but I was told I had myeloma 3 days before we were married which we kept to ourselves till after the wedding.
Anyway back to now I forgot to as my consultant or nurse is alcohol allowed when on REV & DEX? Please let it be so 😉

Live life to the max
Andy. XX

[andygParticipant]

Hi Eve
It's good to hear yours and Slim's good news. It's given me a lift as I begin my latest attempt at getting my stubborn paraproteins to a level for a sct. I'm lucky in that I'm only 10 mins from my haematology department though if errr I mean when I go for a sct I'll have to travel to Newcastle freeman hospital which is nearly 40 miles away. Anyway I'm getting ahead of myself 😉 I hope everything goes well and Slim gets a long remission and you get back to living your lives as normal as possible.
All the best to the future

Andy xx

[andygParticipant]

Hi Mavis and Dai

Mavis I am turning my anger on to the pp's but I'm also hoping the drugs will help out a little. Thanks for the good wishes 🙂

Dai my pp score is in the mid 30's it was just over 50 at diagnosis – I think. CDT got them down to the mid 30's but no matter what treatment I was on they refused to go lower!
Ideally they want me below 10 before a SCT so there's a way to go.
Hopefully Rev and Dex will be my PP3 battery and set me on my way to a SCT. 😉

We will fight them – pesky PP's
Andy

[andygParticipant]

Hiya everyone.
Been for my latest blood tests today – The result of which is I am no longer neutropenic 🙂 I won't get the results about my paraproteins till later in the week.
I have been booked in for my second round DT PACE treatment next Monday. So that's another 5 nights at the hotel NHS.
I'm a bit nervous waiting to find out what my paraprotein level will be. Hopefully they will be falling after getting their a**e kicked by the chemotherapy.

Andy

[andygParticipant]

Hi Dai
I also get tingling round my mouth and lips. I wasn't sure if it was dex or thalidomide that caused it. However dex got the blame for my fat face!

Andy

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