Hi Judy
I am sorry about you husband,you do not say much in your posting and have seemed to carry this burden with your family,but your husband was one of the Myeloma victims as well,so my thoughts on what you have endured go out to you.

I replied on Teresa,s thread because,you did not put your own,thread on,and I can only guess that you are…[Read more]

Hi Chris

Its sad we do not have something like the Myeloma Beacon Survive,s Site,
then we would know how many people are doing well after so many years the longest I heard about before you was 18 years,lots of 10 to 12 years and still going strong.

When I am feeling a bit down,and I am only the carer,I go to the American site,and it makes…[Read more]

Hi Teresa

How are things going,I should imagine the last few days have been very busy,I do hope you have had time to look in here and realise how many people have you in there thoughts.

Take that walk down the garden,I hope it will bring you some comfort,look forward to the grandchild Peter would want you to find that strength,Love Eve

Hi Ali

Your mum knows her own body best,but I would impress on her about taking anti sickness pill 15 min before she eats,mainly because once you have been sick with a certain food,it puts you off it for a long time,so a food you enjoyed becomes a food that made you sick:-( Love Eve

Hi Everyone

Well Slims getting there,as he improves I worry less,will be happy once he has BMB and results as we have been told this is now the only way to tell how the myeloma is in the bones:-P so it will always be a bit of a worry.

He has his line out on Monday and Wednesday it,s up to London never ending'

We thought once the 2 days…[Read more]

Hi Dai
You sound like my grand daughter,her exercise is keeping her eyes open to watch the Olympics.:-)Eve

Hi All

Penny watch out for the Dex as it can hide infections,its no fun if it gets serious.As for AA there has been a big discussion in the new comers section,might be worth a read.

John I am amazed you are working at all,with that combination of drugs,but if need must you always find away,when you are self employed you cannot afford to be…[Read more]

Hi Ali
Well this is it,no going back now,your mum went into this being very strong,so you keep your chin up and keep her spirits up.

If your mum keeps being sick,and cannot keep tablets down they will use a driver,her throat is the first thing to get sore and as Tom said mouth washers as much as possible,saying that Slim could not do even…[Read more]

Hi Wendy
Bit of a Bummer after such a nice holiday and to come home and have your kappa light chains going up.

As to having to wait a couple of months to find out what is going on,to me is all wrong,but saying that Slim is in the same boat,for a long time now the bloods and kappa light chain test have yielded results that have nothing to do…[Read more]

Hi All

Wish I had known about that med for hiccups ,had Slim doing it in his sleep,drove me mad,now it is just every now and then usually when we are out,and things are very quiet,and out of the blue one loud hiccup and the whole world turns round.:-P Eve

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 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 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]

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]

Hi Charlie
Three months ago we lost a grandchild Matty he was sixteen,his sister who is 10 years old put every thing into perspective,she said to her mum everything will be normal but different.

I honestly believe this sums up your position,what seems awful at the moment will seem normal after a while just different.

You will make friends…[Read more]

Hi Charlie

How are you getting on with all the things going on around you,and info you are receiving??????

Charlie you asked about putting off treatment to go to a wedding,you can only ask!!!! they might consider you need to start treatment as soon as possible?? but sometimes you can be given breathing space,it does depend on your…[Read more]

Hi Jean
So pleased for you,it will give you both something to look forward to in the months ahead,I hope all goes well,and you both have lots of enjoyment from the new baby.

Hope yo are both keeping well,have not got round to scrabble on I pad,but did manage to get an invite to you on facebook,but you have to sign into it,will try again when I…[Read more]