hello Gill
I echo what the others have said my dam also burst what a lovely girl

Love Jo x 🙂

Hello Mark

sorry to hear about your dad everyone is correct about the myeloma help line they are brilliant I expect they will deal with your dad tumour first before they start intensive treatment the drugs and treatment today are so much better than 10 years ago I would expect your dad is young enough to have a stem cell transplant and if…[Read more]

Dear Dai,

I've kept reading this post and wondering what to write. Still don't know but wanted to say that I've been thinking of you lots….keep that chin up as much as possible as you are a real inspiration to all of us that have read your posts over the last year or so.

Here's hoping it is a blip and they have it wrong, but if not,…[Read more]

Hi Mark

So sorry to hear about your dad….but you've come to a great place for support and guidance.

It's hard to give any tips so early on apart from my main one would be have a chat with the Myeloma UK team over the phone as they are the experts and will be able to help talk you through what your dad may be looking at ahead of him.…[Read more]

Hello Jean

hope the G&T helped we got stuck on the sand dunes at maspolomas in a shower of rain while we were there got soaked. I think its good to make plans otherwise life is always on hold
Love Jo x

Chin up Dia

You have been so positive upto now I am so sorry the beast is back so soon
but you are a strong character so i am sure you will cope with whatever this thing throws at you next, look at all the new drugs that are in the pipe line that must give us all hope for the future. I could not have a SCT as my kidneys are to badly damaged…[Read more]

Hello Jean

How is northern irland this sunny day I hope you are not feeling so worried now and looking forward to your holiday in Spain we have just come back from Grand Canary had a good time I know where Frank is coming from we just hope it will go way hard to admit we are ill fingers crossed he will be fine.

Enjoy Your Holiday

Love Jo x :-S

How are you doing today Nigel?

Hope things are ok. I'm a bit rough, but think I'm still trying to get my head round not sleeping, and the whole emotional side of velcade that I didn't have with revlimid. Still, hopefully it will work for me more than the revlimid did!!

Debs x

Oh Nigel
I'm with you there- day 6 here too. Up at 6am for a christening this morning (and didn't sleep well because of the drugs and the clock change anyway). Did really well for the whole day, kept smiling and then fell asleep for two hours in the car and crawled into bed when we got home….think kids were v confused that mummy was in bed…[Read more]

Hello Gill

I wasn't told what my paraprotien levels were on diagnoses only my Bench Jones figures which were 22% after my CDT treatment my para's were in a band to fient to measure and still are I stayed on 100mgs of thalidomide for twelve months stopped because of PN not had any treatment for a year now except a monthly infusion of…[Read more]

hI gaye

I think consultants are human to you may have cheered up her day She will be thinking you really appreciate her
Love Jo x 😎

Jean,
I think Mari is right. You are better to try to get Frank to have it checked….even if he does it to keep you quiet…men like thinking that's why they are doing things sometimes!!! Hopefully it is nothing and he can turn round and tell you 'I told you so' but if it is anything that needs looking at, it is SO much better to get the…[Read more]

Hi Jen,
Yes they've warned me about the numbness esp in the feet – and said it's not worth carrying on and risking long term pain for the sake of lowering the pp…..sounds like you did the right thing.

Shame the revlimid not working in making you sleepy at night….took me a couple of days for it to kick in doing it in the evenings. Last…[Read more]

Hi Jen

What great news about your pp levels – how many cycles was that on? I am hoping desperately for that to happen to me. I got hit on my second dose of velcade yesterday. Was fine till I got home and then flaked out totally and was very emotional. It was out of the blue too, as I hadn't expected anythimg much for a couple or weeks!!!…[Read more]

Good luck for next week Sandra, will be thinking of you and hoping those blighters have come down more than they've gone up!!!!

Love
Debs x

Hi Gill,

I think it is REALLY individual. I was up at 32 when I was first diagnosed but was still asymptomatic. It rose to 50 before I started treatment (and even then it was touch and go whether I really had bone pain). I know others who didn't start treatment until their pp was 70. I think it's about the other symptoms surrounding you, and…[Read more]

Ah Gaye,
You made me chuckle on a weekend I don't feel much up to that 🙂
I wouldn't worry one bit….sometimes I think they probably wish we did treat them more like our friends….It's what I'm working on with mine anyway!!
Better what you put than love, hugs and smooches….now that might have sent her running!!!
Hope you're feeling…[Read more]

I thought I'd give another update, just in case it helps those undertaking the trial.
It seems like I have plateau'd with my treatment on revlimid – my paraprotein has dropped from 50 to 23 and my bone marrow only by about 15%. Perhaps I'd have done better with more side effects??!!

Anyway, all the results are back now and they classed me as…[Read more]

Hi again.
If you call macmillan they should be able to help with a counsellor….and remember if one doesn't work, try another- it's important to have one you get on with.
I have also heard similar things about doncaster. Don't be hasty but if you're not sure your mum is getting the right treatment, and if she can face the journey you are…[Read more]

Hello amanda

I know it must be hard for you if you love your mum, have you tried the
Local hospice or Mcmillan I am sure they would help with some concelling

Good Luck JO