Hi all

Well I am sorry you two have relapsed 🙁
I do hope the next move gives you both remision and little side effects.
Stay strong and well.

Love to you Both
Tom Onwards and Upwards x

23-01-2013 at 11:35 AM

Iam not sure if I am posting this message in the right place, but just wanted to finalise Glenn's postings. I know that he has not been on here for some time to post messages but has certainly kept up to date with information and blogs. Sadly Glenns fight ended on Monday 21/1 at 5.15 p.m. We had been told that he had an…[Read more]

Hi Jenny

Yes its a lonely road this MM lark,do you have a support group near you?? as am sure that will get you out and about and chat to other MM'ers ? failing that start up your own 😀

I used to go and pick mine (meds) up at the hospital and its correct you dont have time to Chat to folk, was a lot better when I went for my 4 weekly…[Read more]

Yep I was same Ozzy, and am told it wasn't Sexy lol.

Regards Tom

Hi Wendy and Ozzy

Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone…[Read more]

Hi Ozzy

Yes franks voice was very hoarse when he was on CDT and always worse while on Dex. Hope it eases up soon
Best wishes
Jean x

Hi John

Boy that was great about the SCT and back at work ???? well done you. Frank smouldered for 6 years and then started CDT in June. He doesn't come on the forum and there as his attitude is that his consultant will tell him anything he needs to know. He's not like me I need to know everything that I can about this awful illness. We are…[Read more]

Hi John and welcome to the club that I'm sure you don't want to be in. You are in the right place for advice and support from a great bunch of knowledgeable people. What part of the country are you in? Have you had SCT or waiting? My hubby is waiting for a date for SCT.

Best wishes to you
Love Jean

Dear Jaqui

I am so very sorry to read of Glenn's passing. Nothing that I can say will ease your pain. My deepest sympathy to you and The family. I hope the love and support of family and friends helps you through this terrible time

Love Jean x

Hi Lisa and Mick

Sorry you had to join, but pull up that comfy chair and ask away, I had CDT in 2009 leading up to SCT Dec 09 and am now Drug Free, dont worry too much about not getting a SCT as we have people on here that cant do a SCT and are doing great without it 😎

Am afraid the chest thing is something we have all had to get used to,…[Read more]

Hi Tina
Sorry you have A rash, I had a rash during my CDT but I have had a skin problem for years it just kicked in worse during treatment.

Good luck and hope the rash soon calms down.
Love Tom Onwards and Upwards xxx

Hi Susan
Yes I was on Thal, I got through it pretty well to be honest, yes I went on sick for a year had all it done in 09 and am now Pleased to say drug free and still in remission, my ext visit will be 14 Feb,

Keep well and hope it all works well with little or no side effects
Love Tom Onwards and Upwards xxxx

Hi Jenny

Well I was on CDT and was pretty much the same, I went on sick in the May (that would have put me nearly finished. My third cycle, so am sure it's same as mine.
Good luck with it and hope it puts you in remission.

Love Tom Onwards and Upwards xxx

Hi Keith

Good first week, keep your eye out for constipation that was a devil for me if I got lax (no pun intended) and never took the mess to keep me regular.

And don't forget the water, I would say a little more than 3 Ltr a day as I suffered urinery infections and was told to drink more.

Keep well Keith I did 5 cycles then SCT.…[Read more]

Hi Megan
I was given "The Card" but I don't carry a wallet and the bracelet works for me.
And it's important that we have the information about our bloods and our MM

Tom xx

Hi Susan
A warm welcome to the site.
Am sure I can't advice you what to do, but I can tell you I was on CDT then onto a Successful SCT all in 2009, I am now in remission and drug free and still doing well , it has had it's moments over the year and a bit to be fair but it is a doable .

Where are you being treated ? As some on here might be at…[Read more]

Hi Susan

Sorry to hear you have Myeloma,but welcome to the club,it is very mind blowing when they tell you!!!,i cried when our own doctor told us,my thoughts were how do you control a cancer that goes all round the body in a blood supply.I had a lot to learn,and i have to say it takes awhile to take it all in.

My husband is on the Myeloma X1…[Read more]

Hi Tebebe

Your more than welcome, am please you found a site that is specifice to you, but pop in every now and then and let us know how you are getting on.

Love Tom Onwards and Upwards xx

Hi Phil

I have an SOS Talisman Bracelet Like one here ::::http://www.medical-bracelets.co.uk/SOSBracelets_Men.shtml

Got mine Localy and it has a "Fold up sheet" inside that gives you space to put Contact details, allergys and things that need to be told to medics before treatment starts, hope you never have to use it 🙂 but it puts my mind…[Read more]

Hi David

Sorry that you may be relapsing and I can't give any adviceoin other treatments. Frank is 70 in Aptil and waiting for date for SCT. Consultant told hm that they would not give him another because of his age. The harvested 7,6 million cells.
On news few weeks at Macmillan were confronting the government saying they were denying…[Read more]