Hi Harmony,

I’m so sorry to hear that things are difficult for you and you don’t feel supported at home. I think everyone has different ways of dealing with things that are hard for them, and maybe your husband can only cope if he pretends it isn’t happening. My husband’s family is very much like that and I’m trying to get beyond frustration to…[Read more]

Thank you Peter. It’s good to hear from you. What is really helping me at the moment is reading all the positive stories from people like you who have been living with myeloma and its effects and still getting a lot out of life. My husband is now into the 3rd week of his first cycle of chemo. He’s been out of hospital for a week and it has been…[Read more]

Hi David
hope you are well not been able to get on this forum for weeks since they changed the system
sorry not answered your posts before now I would get your leg checked for DVT it sounds like similier
symptons to some one in my clinic they had DVT
Best wishes JO

Hi Peter

I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

Information and hope is what this forum is about,but there also has to be space for people who need to air there…[Read more]

hi Eve

the velcade really worked for me o paras at the moment the kidneys got worse AFTER I finished chemo funny that so much so they fitted a fistular in my arm any way I must be an ornery b*gger as they have improved at the last visit to the clinic My consultant told me of the new improved velcade which is supposed to be even better than the…[Read more]

Hi Jo

Lovely to hear from you,I have been thinking about you and wondering what was going on specially with the Damocles falling a little bit.

Thank you for information on Velcade I did not know about the second batch of Velcade only that it can be used again on patients who have responded well first time round,all good news.

How are you Jo??…[Read more]

Hi Jo welcome back. Hope all is good with you

Love Jean x

Hi Eve

sorry slim is still unwell did you know there is Velcade 2 a follow on which is supposed to be even better than the first one I have just or three months ago finished velcade didn’t need platelets at all but had several blood transfusions not been on this site for weeks could not get on every way I tried my son in law did it for me
Love Jo x

Hi Tom
BACK ON JOHN HAD TO DO IT FOR ME yippee
big hug
Love Jo xxxx

hi Scott

how are you doing keeping fairly well I hope I don’t know what they did to this site I have not been able to access it for weeks had to get my son in law to do it My Velcade treatment has worked but my kidneys got worse once the treatment had finished they don’t know why so much so they fitted a fistuler in my arm fortunately had a bit…[Read more]

Just wanted to say good luck to everyone,although it’s a big thing for the individual having this procedure ,ita an every day thing to the staff,expect to be emotional and do not worry if you have an odd accident,nothing they have not seen or done before.

It’s a bit lonely in isolation,so make sure you have home comforts around you,this is the…[Read more]

Dusk if you are a Myeloma person,please think about putting you name plus picture,and explaining your story,because that,s what this site is about,helping people!!!!

Stop trying to scare people,this Myeloma is scare enough,specially for people who do not prefer to know a lot about it,it’s there choice,educate yourself by all means learn as much…[Read more]

Hi. Dusk

Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it…[Read more]

Can I join in this post,as a few on here realise what my husbands position is at present .

I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

The facts concerning treatment,NICE has 3 treatments on Board…[Read more]

Hi Peggy

Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
The problem Slim has is that after 3 recommended…[Read more]

As Pete and Michelle have so eloquently put it, I can only agree with them. Where are you being so badly treated? Myeloma is treated with a very small armoury of drugs which are available, and show they work for some ..not all …for some time. I believe that the great majority of us get the best of what is available at this moment in time. Do…[Read more]

Hi Mandy

You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your…[Read more]

Dear Mandy
Devastating news for you, I took a long time to get my head round relapse and found the next toxic round of treatment difficult. I’m now in remission again and feeling more positive at last. The anger and disappointment that we feel when this disease comes back is very hard to bear. You are probably right to seek a second opinion and I…[Read more]

Yep that’s 92.2 x…… I can’t work that out! It’s a big number! 450,000,000 or there abouts. I found the whole SCT experience quite fascinating in a funny way! I just wish I’d not been on the receiving end! It is an amazing procedure.. Terribly clever how the whole process works. I’ve not been asleep before 1 most nights since diagnosis… I…[Read more]

Dear Carol
Hope it’s going well, and I don’t know if you realise the magnitude of your stem cell collection…..but that is 5 million per kilo of your body weight that they will give you back! So if you weigh 60 kilo you will get 300,000,000 stem cells back! Mind boggling eh! Good luck with it.
Helen