Hi Andy

good news that your blood tests are all OK,at least your body is coping with the high PP numbers, I hope that the revlimid and the dreaded dex will sort out the paraproteins in time.
Keep us posted

Wendy

Hi Ann and Pete
ditto what Helen said, its really important that you know what to take on what day in the cycle and I am surprised that this wasnt explained to you or you werent given a chart by the haematology unit. I personally wouldnt take anything until you have this explained to you by the haemtology ward or your support nurse when they are…[Read more]

Hello Teresa
New photo, very nice. How is Peter? And what will you do at the pub (other than drink:-) ) while you are away?
I don't know if chit chat is allowed or not! It says you can talk about anything – so i do, after all sometimes a normal sort of conversation is a welcome one when the going gets tough, sometimes too it is easier to…[Read more]

Hi Ann
I suggest you ring haematology ward and ask for a talk through for each medicine from one of the nurses or on call doctors. The doses can be started at different levels and then increased as time goes on in some places, so we might all have had different starting doses. For example I took 40 mg dex daily on days 1-4 and12-15 of 28 days…[Read more]

Dear Bridget
These infections are a constant nuisance and soooo draining, I'm hoping your next clinic visit goes ok and you get some quality time back soon. How are the family doing? Running round after you I hope? Keep your chin up lady.
Love Helen 🙂

Hi Tina and Dai
He said it all:-) I totally agree, it seems daunting at the moment but don't let it get you down, avoid the people who only give you sad eyes, do something nice, for yourself or your nearest and dearest every day, make it worthwhile. I have found the people here quite uplifting when I've felt 'off it', which has helped me deal…[Read more]

sorry to hear this news as well, she seemed so positive and cheerful,thinking of her family and friends at this time

Wendy

Ha ha Teresa , not likely, this jumper is the passport to the baby! Niece has said we all have to knit something before we're allowed to see it. She was joking but we all have taken her seriously and I and all my sisters are competing! 😀 I'll try and attach a photo but I can't do it on the iPad for some reason
Love Helen

Hello Bridget
I'm wondering how you are at the minute and if you feel like catching up. I've missed your posts.
Love Helen

Hi Andy
I do hope that Friday is positive for you, keep us posted.
Love Helen

Hello Jacqui
Good luck with the transplant, It's over 8 months since I had mine and I'm off to New Zealand next week – something I thought would never be possible a year ago.
Love Helen

Hi Teresa
It's good to hear that Peter is dictating the treatment plan, I'm all for autonomy, but it must be so so difficult for those of you who watch and wonder. I can't imagine how I'd feel, if the boot were on the other foot. I think the secret is to try not to worry and enjoy the time as much as possible, my husband is beginning to realise…[Read more]

Hi Tina
I swear by peppermint tea but it's not always enough, I need plenty of fibre with the tablets:-P and it's difficult when you don't always feel like eating.
Love Helen

Hi Pete
Good luck with all the tablets, there is lots on here about the tablets, spreadsheets, yoghurt to mix them with, and of course when you are wide awake at 3am because of the dexamethasone, there is often someone here to talk to. 🙂
Love
Helen

Dear Andy
Hope the revlimid works for you. I'm just finishing my 6th maintenance cycle of it and am still in remission with a good blood picture.:-D Love Helen

Hi I have had tiny hard itchy spots all over me since my transplant 8 months ago and was told 'this sometimes happens for some people' – no idea why! It's not red though and doesn't look like an allergy.
I'd keep showing the docs to make sure there is no allergy going on, mine is beginning to lessen now and some of the spots are disappearing…[Read more]

Hi Debs
Hope you are well, parcel in the post to you with a few raffle prizes…… They look more suitable for a to bola to me but do with them what you wish:-D
Love Helen

Dear Eve and Slim
How unbearably sad for you, I am thinking of you and your family, it could not be a more difficult time.
Love Helen xx

Hi Carol
Yes I am on face book – wendy duffield Manchester should do it, there are quite a few forum members on it

I also discovered recently that there is a Multiple Myeloma Support Group on Facebook, the members are mostly from the US but it is quite good and if you are on facebook you can join

Anyone welcome to be my "friend"!!

Wendy

Hi Tina

its hard to manage all the pills isnt it especially with the shock of the diagnosis and everything else you have to take in. A pill box thing might help.

I was assigned to CTD on the myeloma XI trial and had to stop after approx 1.5 cycles due to side effects of Thalidomide such as nerve damage and skin rash. However everyone is…[Read more]