Dear Eve and Slim.
We are so sorry to hear of your sad loss. Our thoughts are with you and your family at this sad time.
Love and hugs.
Andy and Steph xx
Dear Teresa and Pete.
We are so sorry to hear your dreadful news. It knocked the wind from my sails. I don't know what to say other than you are all in our thoughts and we hope that you knowing that can in someway help. There's no need to reply but I do hope you get this message.
Lots of love and good wishes.
Andy and Steph XX
Hi Stephen.
Welcome to the forum.
The important thing to remember about mm and the fight against it is that everyone's journey is different. Drugs that work marvellously for one person fail to make an impression on another. I know I seem to be in the later group 🙁 Velcade didn't work for be and now I'm trying Revlimid and Dex with my fingers crossed. It's impossible to say how you'll react to Velcade but I have read on this forum good results with Velcade I guess I was just unlucky.
Good luck with your treatment and keep us informed of your progress.
Take care
Andy
Hello Vanessa and Philip.
Welcome to the forum. We are all friends here.
Sorry I can't help you with your question. I was only diagnosed October last year and haven't reached a stage for a sct yet. I'm sure you'll receive an answer from someone who has had a similar experience as Philip soon. If not you could give Ellen a call on the helpline and she will be able to guide you.
Good luck with the new treatment.
Take care.
Andy
Hiya Ann and Pete.
Welcome to the forum, none of us want to be here, but it's a friendly, supportive and informative forum.
Sorry for the delay in welcoming you but I was in hospital last week and have only just recovered.
I was diagnosed with mm oct 2011 after approx. 18 months of back trouble.
If you have any questions ask away, either of you, you'll almost certainly receive an answer or an educated guess. If you really get stuck there's the myeloma helpline.
Take care – both of you
Andy
Hi Eve
My blood tests came back good – hopefully when they check my paraproteins next week we'll see some downward movement – however I'd been feeling a bit under the weather since Monday and my temp has been rising. It was 38.2 today so after my zometa they did all sorts of tests to find the source of the infection. They think it could be my waterworks! I'm back again tomorrow so they can keep an eye on me.
Good news – my potassium level was ok so I've got some spare bananas now 😉
Andy xx
Hi Teresa
I hope the hospital visit goes/went well. I was. At hospital today hmm yesterday now for blood tests. They came back ok. Though I did have a raised temperature – more pills to take.
I enjoyed reading your son in laws brewery website it's well set up and informative.
I'm happy to see he's brewing Belgian beers they are a particular favourite of mine. I travel to Belgium often – recently twice a year it's a lovely place with lovely people and wonderful beers. I've been going over with friends from our running club for over 10 years annually in june under the pretext of running races but really for the beer. I won't be going this year for obvious reasons. I may make the second trip which is usually December with my wife brother and sister in law, fingers crossed, for the Xmas markets! Well for the beer for my brother and I 😉
Good luck at the hospital I will be thinking of you both.
Andy xx
Hi Tony
Welcome to the group. You'll find out most things you need to know from your friends on this forum. Everyone's story is different and everyone's journey is also different. If you get stuck for advice then there's the helpline.
I myself was diagnosed in oct 2011 so I've not long started my journey. It's been a bit bumpy so far for me. Hopefully you'll have a smoother journey.
Best of luck with your treatment
Andy
(it's nearly 4am – a DEX night)
Hi Eve
I take my DEX just after breakfast – not that it makes much difference because some nights I'm wide awake and others I crash out. Today I was like a zombie all day just wanted to lie on the sofa with my eyes closed! Now I'm in bed I'm wide awake 🙁 Hopefully as soon as I put my phone down I'll nod off.
Tomorrow is blood test day – with a bit of luck everything will be ok. I have been having problems with my potassium levels the last 2 weeks. Luckily the hospital is only 10 mins away it must be a nightmare for you and Slim to have to travel so far. I hope everything goes smoothly for Slim's sct.
Take care
Andy xx
Hi Teresa
I am indeed a beer drinker [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink005.gif[/img][/url]
Having a son inlaw with a micro brewery sounds like heaven to me. We've been out again tonight for a couple of beers with my brother and his wife. Not that I drink much nowadays. Is Peter a beer drinker? what's your favourite drink?
It's 3am and I'm wide awake! Guess I'll be crashing out later when I'm supposed to be awake. I blame it on the drugs.
I'm going to try for some sleep now 🙂 I hope you and Peter have a good weekend.
Take care
Andy xx
Hi Teresa.
"feeling alright" = ok. I'm sure I would feel a lot better if it weren't for the drug but the drugs are a necessary evil :-/
I've had a busy few days with Easter ( going out having a few drinks 😉 ) and yesterday being my wife's birthday more drinks and a meal. Today I've been tired out!
I've been on a steep learning curve since diagnosis in October – discovered a cancer I'd never heard of, treatments I'd never heard of and drugs – well too many to take in though I am taking them.
My last bloods were ok – though they won't check my pp's till I've finished my first cycle of rev – dex. They're going to check my brother and sister for a bone marrow match – i don't know if that's good news or bad or wether their just covering all bases.
I am able to get about more now. My walking has improved the past few weeks. To think I was running marathons 2 years ago and now I think I've done well to walk round the block.
I know how Peter feels getting all those bloods taken you have to lighten the mood if you can. I'm lucky the staff at our day unit are excellent.
Sorry if this post is a bit of a ramble but it's my last DEX night and my brain is a bit mixed up.
I hope everything goes well with Peter and you are coping.
Andy xx
Hi Mavis
Sorry to read about your troubles. Hopefully the medics will get things sorted soon and you will be able to go home.
Love and best wishes
Andy xx
Hi Dai
Just thought I'd add a newbies perspective.
Since I've only been a member a few weeks I can't comment much on the history of the forum however since I plucked up the courage to post I have got nothing but praise for the forum. The support, advice and kindness from my friends that I have gained on this forum has humbled me. I now have somewhere I can rant and rave freely and get nothing but help and support from friends who take time out from their own personal battle with MM to reply.
I am struggling to get my pp's down towards a sct and at time feel I'm battling up a very steep hill but I do know I'm not the only one battling this horrid cancer. As I gain experience I will hopefully be able to give out advice and support.
Thank you to every friend that has increased my knowledge of mm
Keep on posting – as and when you feel appropriate.
All the best
Andy. xx
Hi Teresa
DT PACE well the DT part of it is the usual dexamethasone and thalidomide (tablets). The rest was Cisplatin , Cyclophosphamide , Etoposide and Doxorubicin all given as an infusion 24hrs/day. Not sure how it equates as "pace" but there you are.
I've enjoyed Easter thanks – we've been out and even had a few drinks [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink004.gif[/img][/url] I hope yours has been ok too.
My next blood tests are Wednesday hopefully they'll be ok as I'm feeling alright. Good luck at the clinic Tuesday.
All the best
Andy xx
Hi Teresa.
I was diagnosed Oct 2011 but I think my symptoms started 18 months previous. The usual back pain treated by the doctor with pain killers and Physio.
On diagnosis my paraproteins measured 50 after 4 cycles of CDT my readings only dropped to the mid 30's. I was then moved onto PADS (Velcade). I had 2 cycles of that with no movement in pp levels. Next they tried me on DT PACE which meant 5 nights in hospital hooked up to 2 drips 24/7 with again no significant movement in my pp levels. I am now on cycle 1 of Revlamid + dexamethasone with fingers crossed.
They're still hopeful that I'll get to a level and have a sct. But I'm proving a challenge to the medics.
I hope everything goes well for you and remission is achieved again.
Oh by the way I'm 53.
Take care
Andy xx
