Hi Charlie

I think you know I was on CDT then the SCT I had in Dec 09 and its some time down the road and I am now Drug free so trust me Charlie the trip is worth it its hard its long but its worth it stick with it and no sooner said than done.

Re the "Hick Ups" our Land Lady at our pub sorts all of those out by "Getting you to fill your…[Read more]

Hi Wendy

Well your Nurse is correct, I am told that the tests over a period of time go up/down (no wonder am confused) but your Nurse is wrong in saying "tests were expensive and cant be too frequent when not on treatment." well am sure if it needs treatment the sooner the better.
I would get in touch with the Top Man and ask if you can have…[Read more]

Theresa,

I had no idea that you had lost Peter and was glibly answering your posts in ignorance of your loss. I am so very sorry to hear that you have lost your Peter… There is very little that I can say other than my thoughts are with you and you too Judy, at this time. I hope that you find support and love enough from your respective…[Read more]

Tom, Mavis, Tina , Liz and all,

Thank you for your support.:-)

Well it really does seem that the problem has sorted itself out…. At least for now but I am a believer in self healing and perhaps my tactical use of paracetamol and my usual regime of eating little (although my appetite has been more than fine) and drinking fluids for Wales…[Read more]

Hi Andy
If good thoughts good get you through this,there are plenty on here for you,as to being excited or worried,could you have been any more worried than you were with not much progress!!!!
Make it Excited you are going to see one of the people who know all about this dreadful disease,who works in a hospital were trials are being held.

So…[Read more]

Hi Vicki,

The South West seems to have funding problems in certain areas. I would love to know what their funding criterias are. It is interesting that your consultant says that Periaxafor is 'not available' in the South West…That can only be due to funding decisions and not because of availability… It means that it is not an option due…[Read more]

Hi Teresa

I am so sorry Teresa,I hoped for your sake that Peter might live long enough to see the new grandchild,but it was not to be.
I hope Peter had a peaceful end with his daughter and son and yourself,It is sad that people are taken from us when they have every thing to live for,and my thoughts and good wishers are with you.

Try not to…[Read more]

Hi Andy

Well Done M8 and am sure that Tuesday will soon be here (I hate waiting)
And never worry about it yet excited is better 😎

fingers crossed for you

Tom "Onwards and Upwards" x

Dear Teresa and Judy

I am so sorry to read you have both lost your loved ones to this dreaded MM. I send my Love and Cyber Hugs to you both at this very sad time.

Love and Loads of Hugs

Tom xxxx

Hi Andy,

At least events are moving upwards and onwards, to coin Tom's phrase. I cannot see Prof Jackson not coming up with a positive action plan and your PP's dropping is a very positive stsrting point.

I wish you the very best for your appointment. You deserve a good break, a break that leads to the next step… then hopefully it will…[Read more]

Hi Chris
Congratulations,that is good news plus brings a lot of hope to people who are just starting there journey.

We could do with people like you posting more often,but i suppose once you are out of the myeloma bubble,you do not want to keep looking back

Thanks for you news Chris. Eve

Hi Alex

First may I say welcome ,its the old saying no one wants to be here,but this site is very informative,:-S
Second know very little about padimac trials except its not in SE Kent and if my husband wanted to go on a trial like this it would be constant visits to London.saying that if needed we would.:-(

My husband is over 18 months…[Read more]

Aww bloomin Ummm… on your behalf Dai, Bless I bet you both have got your heads spinning am I aint I Ummm… again.

Its strange though the more folk you talk to (even none MM folks) seem to get ill during the night/w,end whn its harder to contact the People we need:-S
Am pleased it is the best you have felt for a few weeks Dai lets hope that…[Read more]

Ummm…

I had the alarm set for 7am to ensure we were up and at the Day Case by 8.30am.

I fell asleep approx: 10.30pm. I woke at 1.15am with really bad stomach gripes. I tried to ease the pain by stretching and eventually the pain subsided but left me with the usual sore tummy. I stayed awake until 6am ish.:-(

Here's the Ummm bit.…[Read more]

Hi Gina
Lovely to hear from you,I hope you are enjoying life,know you must be missing mum,first year the hardest.

As for Slim feeling lucky that we have got this far,has had to up his pain killers but better to have some quality of life,than be constantly feeling bones aches and pains.the damage plus other complaints coming to the fore.

End…[Read more]

Hi Dai

This is a roller coaster ride for you,feeling better on Myeloma Drugs,yet having problems with pesky bugs.I think you feel it more when you have been having a better quality of life,and something like this starts.
I know no one wants to take more tablets,but maybe antibiotics long term might be the answer:-(
I hope they sought you out…[Read more]

Thank you Tom & Gina, much appreciated.:-)

Not to worry Gina… this is common and garden side effects… more a result of my medication than MM so while I am complaining I'm still on my treatment. This time something seems to have taken up residence in my gut and needs a specific anti-biotic to clear it up. 😎

I am sure the medics will…[Read more]

Hi Chris,

I'm spitting feathers. This is an obvious example of the postcode lottery at work right here.

To get to 7 is good… it means you need a boost and Pleriaxafor may well have done the trick… it did for me and several others here but there was no-one with enough political or financial clout to make the decision to give it to…[Read more]

lovely to hear some positive news Eve,
you book that holiday and have the time of your life
Gina xxxx