Hi Philip
Welcome, sorry you have to join, but there are a lot of very helpful people here. I'd be careful as Mari says, a lot of the muscular pain I had before my diagnosis I now know was bone pain from the myeloma as it has now pretty much gone and I'm doing very little physical stuff apart from walking. I found paracetamol and lots of walking…[Read more]

Hi Tom say hello and send a hug to Bridget from me too
Helen

Hi Mavis
Progress is good… Hope they have got you on your feet again. And as the pain settles you might find it easier to get around.
I found that the dexamethasone worked wonders on the arthritis in my hands and now hope it works on all your painful joints too. The difficulty with mm and arthritis is working out which pain is caused by…[Read more]

Dear all sorry it's a group reply again, thanks for all your advice here, I feel as though I just put a stick in a hornets nest I got such a flurry of replies:-)
Elaine- I still can't get used to the thought that this is so permanent and I feel I have to go back and see what it's like, I hope as Dai suggests that the phased return will let me…[Read more]

Hi Jean
Keep the appointments, they may bounce back as the others have said. I had a neutropaenia of 0.6 – 0.9 for that year before my diagnosis – which was missed- twice and apparently lots of fluctuation here can be one of the indicators of smouldering mm. They did ask if I had any infections in that time… I never did.

Also I've now got…[Read more]

Hi Scott and Teresa
Lovely pics
Helen

Eve I will think of you while I'm there Helen

Hi Teresa
How did the hospital visit go?
Love Helen

Hi all
Ostrich now removes head from sand, I didn't buy the cake stand- too dear.:-(
I saw the boss today.
It was less traumatic than it could have been and I managed to keep calm and not cry! No idea what will happen but he went off with a list of things to find out about going back, and will let me know.
In jan I asked about ill health…[Read more]

Hello Tony
Its a funny place to meet people, I too am on myeloma xi trial. I have oligo secretory light chain (lambda) mm and was diagnosed in feb11. I had 4 cycles of revlimid etc which took me to complete remission, then sct in August 11. I've been on the maintenance arm of revlimid since then and am slowly returning to fitness.
Hope your…[Read more]

Mmm ……. but charming new photo
Helen

Hi eva
very interesting story
you are right we have a choice about how we are with our medical teams and how informed we wish to be about our illness. I think knowledge is power and am the latter like you. I ask questions, some very difficult ones for my consultant to answer and some very stupid questions too. We dont have an adversarial…[Read more]

HI Eve
I am not sure, I thought it was just a UK trial but obviously results will be published worldwide.
Regards

Wendy

I second that Dai, I do trust my Consultant to come up with the best possible treatment regime for me when the relapse comes but know she is tied by funding constraints.
A worldwide best practice protocol would be fantastic. Surely not that difficult in this online world we now all live in. Surely not that difficult to link up trials…[Read more]

Hi Eva
What a horrendous time you have had before your relapse was properly diagnosed. Glad it is all on track now but I am horrified by the lack of care from your edinburgh doc, you are more forgiving than I would be,just as well you had private medical insurance

Wendy

Hi all
I got a horrendous cold out of the blue a couple of days ago, copious amounts of snot! That is my third cold in 7 months post transplant. Is it becuase my immunity is building up again so like a child will just get everything that is going? Is my immune system forever compromised even in remission? I dont understand!! Can anyone throw any…[Read more]

Hi Dai and Eva
Dai thanks for starting this very interesting post and Eva for your very interesting comments.
There is definitely a pathway from which there appears to be little scope for deviation. When I raised the issue of whether the SCT was the best option for me given the trend in the States against, my consultant nearly had a fit! She…[Read more]

Dear David, Eve, Dai, Paul, Debs, Scott and Tom
I'm really sorry not to have replied to this post earlier, I am sooooo grateful for your very sensible advice and suggestions and it is good to see that others have had different experiences to me.
I have an interview with my manager next week and am getting just a little anxious about it, so am…[Read more]

Hello Susie
It's a terribly difficult time and I do sympathise, I remember it clearly, it was Christmas 2010 for me. You hardly dare think about it, but it wakes you up at 4 in the morning as you wonder what the result is going to be. Be brave, whateve happens you will cope with it. In the mean time do nice things and enjoy the weekend as much…[Read more]

Hi Eve
You are right, head is now back out of sand, down day is over, (I think it's the zometa effect) and I'm sorting out the packing, toothbrush, sunnies and knickers. ( i like travelling light ;-)) will borrow all my sister and nieces in law stuff when I get there8-) However the medicines bag is quite large:-( only 4 weeks to go:-D 😎 :-)…[Read more]