Thanks so much everyone for the understanding and encouragement Not had a very good week with sickness and anxiety but maybe it's because I go for my operation on Monday to repair my Vertibraes at least once that is done the pain will hopefully subside leaving me stronger for the SCT. Thanks again, it's amazing to know other people care and it…[Read more]

Hi Ann.
Welcome to the forum sorry that you've had to join us.
I was diagnosed after 18 months of back pain. It first presented itself whilst training for the London marathon 2010 I was finally diagnosed Oct 2011 – 3 days before our wedding.
We returned from a short honeymoon to our first meeting with our consultant to be told myeloma is not…[Read more]

Hi Helen.
Oh the joys of MM. As you say it's a roller coaster of a ride this journey of ours. There are reasons to be optimistic – plateau, few plasma cells etc. as for the back pain hopefully that's just a consequence of over use. Neutrophils 1.0 that's the norm for me.
You say you feel great at the moment well to me that's a good indicator…[Read more]

Hi Ian
I'm on RCD. Revlamid is taken orally for 21 day then 7 days off. I don't get many side effects from the Revlamid but it can make you tired and depress your neutrophils. My main problem is with the cyclophosphamide side effects which are nausea for 2-3 days after taking it. It can also depress your neutrophils mine hover between 0.8 and 1.1…[Read more]

Hi Vicki & Colin.
Sorry to read that Colin was back at the hospital yesterday. I do hope his fatigue is down to him doing too much too soon. I can't believe he went back to work so soon after his SCT. I can't imagine my returning to work at all at this moment. Everyone's needs and journey are different I know but I think one constant is the…[Read more]

Hi David
Just want to wish you good luck for your journey with velcade.

Every day is a gift

Andy

Hi Jean.
I was told when I was diagnosed that although the delay in starting my treatment wasn't ideal it shouldn't effect my treatment or outcome. I had 18 months of back pain before I was diagnosed so how long I'd had MM before that is anyone's guess.
It's a good idea to take your list of questions with you and write down the answers given to…[Read more]

Hi Eve.
Slim does seem to be having a rollercoaster of a ride with his rotten mm. Hopefully he won't need to start treatment again soon. Though I can understand the thought – it's back let's get treatment started again straight away. The trouble is with limited drug options the longer you can put off treatment the longer those limited drugs have…[Read more]

Hi Tom
It's good to know your temp is under control and the antibiotics are doing their job. It won't be long before your raising a glass or two of vodka in celebration. I'm sure Eve and I will join you with a little tipple of our own 😛

Every day is a gift

Andy – cheers

Hi all.
First of all can I thank you everyone for their support and good wishes. It's new terrority for me to have some good news 😀 not sure how to handle it lol. Though weirdly it has put more pressure on the next blood tests. Usually I can forget about them till nearer the time but this time I'm more conscious of them and hoping the last…[Read more]

Yeah – Tom is back. Watchout for those nasties >:-( hope you have a speedy recovery and can get back to the vodka! Soon 😀 Cheers.
Onwards and upwards

Every day is a gift

Andy

We used World First….no health issues to claim for thank god, but we did have a broken camera which they paid for no problems.
Debs

Thanks Babs and Helen

Babs, I am just not sure whether it is just the revlimid because of the fact I've been on it so long without any side effects. Helen, I think you might be right about slap cheek….sort of didn't want to face into it. I'll see if I'm the same tomorrow and perhaps get a GP appointment if so. I've now scared myself reading…[Read more]

Great news Jean….really pleased to hear that it is all going so well….hope Frank is chuffed too 🙂

Deb x

Hi Michelle
I suppose it could be linked. My transplant has meant I've definitely gone through an early menopause with hot flushes and all that but I suppose this could be a new and different aspect to it. It's just come very much out of the blue!
Thanks for the thought though…may kick me into action re going to speak to my GP about it all.…[Read more]

Hi Sue.

I'm sure you will find the ideal spot for Michaels ashes and you will be at peace with it. You mentioning the cricket ground brought back memories of scattering my Dads ashes several years ago. Funnily enough when we as a family were discussing where to scatter his ashes Scarborough was a strong candidate. Eventually we all came to the…[Read more]

Hi Gill.
What a fantastic photograph.
I'm sure it will provide you with plenty of smiles and quite a few tears in future but what a marvellous keepsake it will be.

Love Andy xxx

Hi Dai.

I've been on Zometa since October 2011 and I have it once every 4 weeks. It has two actions, I'm led to believe, one as a bone strengthener and another that it has been shown to work against Myeloma as well.
I haven't been through SCT so maybe my regime maybe a little different but I haven't been told I will be coming off Zometa though…[Read more]