Hi Ang,

Back home after blood test in the morning and Stemcell collection in the afternoon. All went without a hitch, it took me 3 1/2 hours but they are very pleased because they collected 10,000,000 cells per kg of bodyweight. They say they only wanted 2M /kg. No pain during the collection, all very easy as I’m sure others will tell you. If…[Read more]

Hi all
Got this message from Becky Crowther via Facebook.

Andrew Godfrey please let everyone know in the our Dai group on Myeloma site that my brother made a speech today and he read out some of the beautiful posts from there, you were all mentioned and very much thought of today…all our love to you all xxxxxxxx

Hi Tom

I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of…[Read more]

Hi Eve:: well am sure he said pet scan?? but we will see lol, yes i know it should give me another two ish years and am happy with that as we never know what will come next (that cure sounds good though) I have a good sprint on Eve dont worry about that and when it gets too close I will turn round and hit it head on and trust me the Myeloma aint…[Read more]

Hi Tom.
I already knew of your sad news via Facebook. I’m not going to tell you how everything will be ok and how great Velcade is because you know better than most, excluding the medics, the pros and cons of most treatments.
You’re one of the longer serving fighters on this forum and I wish you well in the next phase of your battle and that…[Read more]

Hi Ang and Rebecca,
Well I don’t know about labour pain and unlikely to find out but on day 4 of the injections (Thursday), I had very excruciating pain in my lower back. I felt I had been kicked or had a kidney infection. It lasted 24 hours only and then have had just the odd throb since then. This has been mainly in the hips with just a bit in…[Read more]

Hi Everyone

Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more

I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!

He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB…[Read more]

Hi Tom

I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims…[Read more]

Hi folks
Thanks for your support it really means a lot.
Carol I do feel blessed four good years was more than I expected and to be honest it’s not that much of a shock to us.

I am being treated in Scunthorpe General under Dr Jalihal and the Velcade would as he said in 1998 be his first choice but at that time they wouldn’t let him.
As for the…[Read more]

Well Tom, a real bummer I’m afraid. As for Velcade, they do say that it will hit MM hard initially and then be less effective. I have had Velcade since the end of June and have just finished the last session – Stemcell harvest on Monday.

The biggest thing is the pain I have from the Neuropathy in my feet. This started during treatment and got…[Read more]

Hi Tom
Well this is a post I didn’t expect to see for a long time. It must be so disappointing, especially when you’ve had such a long drug free remission.
You must be at an advantage though as your body has had a good long break from drugs, so it should respond well to the next attack.

As you say, “just get on with it”. That’s the attitude I…[Read more]

Hi Carol

I can only tell you Franks experience. SCT was decided but before he was given date for procedure he had to go through quite a lot of tests and heart and lungs were two of them. Has your consultant not mentioned it. Maybe on younger people they don’t carry out the tests. Mind be worthwhile to mention to consultant. Hope all goes…[Read more]

Hi Sims and thanks for the reply. I think is is definitely something I can mention to my specialist, I am seeing him on Tuesday and I think any input is a positive thing.

Good luck & take care

Mandy x

Hi Andy

Thank you so much for your reply 🙂

I am now seeing a Nuerologist on Tuesday so I will mention to him about bone pain possibly being related to the Stem Cell production.

Its a little depressing to think I may have to live like this if it is damage caused by the treatment, I don’t have much quality of life and I am only just 50. My…[Read more]

Hi Mandy.
Just wanted to say I’m sorry your suffering so much.
There’s not much I can say in the way of experience as I’ve never had a SCT and never will. It’s a long story but a shortened version is I’ve not responded to the drugs.
The only thing I can think of is its something to do with the production of stem cells as I’ve read that causes…[Read more]

Hi Jeff
I was on pain killers for my back, very strong ones at times, but I stopped taking the stronger ones because I didn’t like the way they made me feel. So I stuck to paracetamol and oramorph. Post op I still get pain though it’s not as sharp as before where they operated. The trouble is my back has damage from top to bottom so if I’m not…[Read more]

It looks OK to me and if it helps keep the scummy spammers at bay, that’s a good thing.

The only thing I don’t like is being labelled a “participant”. Makes it sound as though I’m taking part in “It’s a Knockout” or some other sporty thing!!