Hi Alison,

you will find your illness will be catergorised. e.g. I have Multiple Myeloma IgG Kappa. The IgG refers to the actual Immuglobulin that is affected. Some are IgM, others are IgA, IgG is the most common. The kappa refers to the Light chain that is affected. I still don’t understand it all and there are some good Oracles who use this…[Read more]

Hi there, Think of Life of Brian and “Always look on the bright side of life”, the words are so true. I have a 7 year old daughter, she had just turned 6 when I was diagnosed and probably like you we were on the internet getting more and more scared as we read various stories and statistics. Anyway, 18 months on, post Allo SCT, I did not have a…[Read more]

Hi there, well, you’re a year older than me (hope you don’t think I’m rubbing it in) and in a similar position I believe. I too had an SCT in January this year and have not achieved total remission, in fact my IgG is at 22.5 and has been stable for the last 6 months. I was gutted when the medics told me my IgG level and they wanted me to have a…[Read more]

Hi, in March 2012 the day before my wife and I were due to fly to Africa for a months safari my GP phoned to advise me not to go, a few days later at the haematology dept at Leicester Royal I was told I had myeloma. I have had no bone or kidney problems. I went onto the myeloma XI trials, and in early February 2013 had a stem cell transplant. At…[Read more]

Hiya folks, I attend the Leicester Royal Infirmary, I’ve only ever had one BMB. As a matter of course the hospital give the patient gas and air, worked a treat for me and speaking to others they were the same.
Odd how they all seem to work differently!
Regards
Tony F

Dear Sarah.
Sorry to read your sad news. Such an eloquent and beautiful post.

I can only add my sympathies to you and your family and wish you the very best for the future.

Thinking of you especially for next Tuesday.

Andy xx

Hiya.
When I was first diagnosed I was in and out of hospital frequently and didn’t think I would have very long. Talking about my diagnosis with anyone who’d listen helped me get everything into perspective and helped he come to terms with my myeloma.
We were married 3 days after the word myeloma came into our lives. Like I said previously the…[Read more]

Hi David.
Yes PIP is the replacement for DLA. All new applicants go onto PIP straight away and DLA claimants will be migrated over in due course. It’s all a money saving exercise that’s costing hundreds of millions to implement and the only way they seem to save money is to cut the benefit payments and delay the payments as long as possible.
Oh…[Read more]

Hi all.
Well I’ve been celebrating my PP result for the past week 😉 sunk a few beers in that time. Gideon Osborne will be pleased with the tax take off mine and Steph’s drinks.
I’m obviously hoping that the Pomalidomide keeps working for a long time yet but you never know with myeloma. I’ll see what my consultant says Thursday. Got to remember…[Read more]

Hi Maureen.
I agree it’s shocking the length of time it’s taken. When I applied for my DLA I had the form filled in by an expert at a charity. He even got it back dated for me to diagnosis! I only had to wait a few weeks. When I had to renew, for some reason I didn’t get a indefinite award, my consultant filled a good proportion of it in and I…[Read more]

Hiya David.
It’s going to ge a busy few weeks for you I hope everything goes smoothly.
Your still on anti thrombosis injections! I get to take a little pink pill now instead. I think after jabbing myself approx 800 times my consultant thought I’d been through enough.
Your bloods should improve because Revlimid is known to depress them. It got my…[Read more]

Hi Rebecca

Frank went through SCT in March 2013. On leaving the hospital he was told he would have to have “the baby” injections, right from the start. Within a couple of days,the consultant sent him an email with a schedule of all the vaccinations he needed – with dates etc. A copy qhad also been sent to his GP – who contacted him when they…[Read more]

Evening Stanley, yes I also was given Mozobil, ( check out the price per shot, you will certainly be getting your money’s worth from the NHS! ) as my stem cell harvest was over two days I had two injections.
Best of luck with the transplant on August 11th, hope that it all goes well, during and after.
Keep us posted on your progress.
Regards
Tony F

Please pass on my condolences to her husband and sons.

I would like him to know that although Eva had not been posting for some time,I always had her in my thoughts,the last time I heard from her was when she was in London having treatment that would go on to her second SCT,staying at a B&B,that takes some courage to be alone in London waiting on…[Read more]

Loopyladye

Hi I do not usually reply without knowing some back ground,as this site is open,!!!

You are obviously going through a very hard time,and had to cope with a lot in a very short stretch of time,this can be very hard as it does take time to get your head in the correct frame of mind,everyone is going to tell you,you must look after…[Read more]

It is good to hear from you Don, glad all went well and hope you feeling stronger every day.
Best wishes Karen

Must have missed that part of Jeffs post ref online access to hospital records, I attend the same clinic so next visit will ask the obvious question, will let everyone know.
Regards
Tony F

Hi Karen, haven’t seen you in clinic, really pleased that it is all going in the right direction for you. It’s a good feeling when you restart doing all of those things that others take for granted. Still get tired occasionally and have to pace myself doing things. Because I am on the myeloma XI drug trial I go up to the Hope Clinic, bit less…[Read more]

Hi Angela, yes I was given a pre printed form by the transplant team when they released me back to the haematology specialists. I had my SCT at the beginning of February 2013, so a year before your husband. The first series of ‘baby jabs’ was 6 months after SCT. I had, pedicel, pneumovax and meningococcal. The second lot was at 8 months and the…[Read more]

Hi David

Love ing it,grandfather in the nick. Lol

I could not dream of going in to my cupboard,would find I am associated with IRA Slim says I have the face and back ground lol.

Live is for living and you are making a good job of it!!!,so that’s what is important.

Best Wishers wishing Dai was around to correct everything,in a nice way!!!? Eve