Hi Sharon hopefully you wont have to wait too long before you feel ok again Thats such a long wait for PET scan though, mind you I have never had one I dont think UCH has access to PET scanner I wish they did if reports about their accuracy are true! I know what you mean about having to wait for RT I used to despair after getting the district…[Read more]

Hi Craig I am glad Etta is over the worst You two will get through these times as you seem like a very strong partnership, I know I couldnt manage without my husband Just a word of caution though try and make some time for yourself that has nothing to do with myeloma or hospitals as it can take over your life , so try and have some fun too love Bridget x

Hi Sharon thankyou . Its such bliss to have got rid of that awful pain at last !! Now I dont have to feel pressured to go into the hospice for methadone trial either , I really did not want to do that. I hadnt realised until last year , when radiotherapy got rid of the last tumour on my spine, just how precise and effective it was these days ,…[Read more]

I am sad to hear your mum has passed away but at least she was with her family She will always be in your hearts and memories love Bridget x

Hi Gina what a relief for you to know its not her lungs causing the breathlessness Hopefully mum will be feeling a lot brighter today and you can all enjoy the weekend love Bridget x

Good morning everyone a very interesting topic this not sure I can add much except to relay my own experience . From the initial consultation at UCH I have felt they are at the forefront of any new treatments With referwence to their hands being tied by NICE guidelines I have never felt that was the case.When I asked about the Velcade rules on…[Read more]

Hi Gina
Nice to hear from you,sorry it is not better news with your mum,how are her lungs,are they any better after the treatment.
It does seem to be one thing after the other,hope she begins to feel better now she has had some blood ,do not know much about revimide except in trials as the other side of CTD.
Hope it works and you can keep your…[Read more]

Hi Everyone
Once more in to the breach,and hoping to clarify and expand this discussion.

The hospital i go to has a specialised haematology dept that is taking part in Myeloma Trials which Slim is on.
When on trials you have to follow the pathway,but you can come off trials any time,and you can be removed of trials if they think you are no…[Read more]

Dear Briget

Thinking of you. Hope all goes well and you get the OK for the drugs soon.
Do hope that pain is still under control and that your holiday lited your spirits as much as mine did.

Love.

Mavis x

Hi david

You raise an interesting question. In another post I point out that I have just been moved from Bonefos to Zometa this month – first infusion this Tuesday (and had shivering and a temperature yesterday! but gather that can happen in the first month).

I had read that it was now NICE's recommendation as first line treatment because…[Read more]

Dear Gina

Do hope your Mum is feeling better soon and the transfusion works a miracle.

Much love to you both.

Mavis

Hi Mari

Sorry that Steve's PP levels are rising, but as the Consultant says, no need to panic – in the scale of things they are still very low. What were they at their highest? More worrying, at this point would be if he was having lots of other complications like infections or kidney damage. Tell him to keep drinking the water!!!

Love…[Read more]

Hi Dai

Agsin you rsise a very important point and one which is very worth our debating – and maybe an article in "Myeloma News". I read an interesting post this morning from Pat – Myeloma Beacon blog, where he poses the first part of a discussion on individualised treatment plans, something very dear to my heart.

You are so right though…[Read more]

Hi Nettie

Having seen the photos I realise you really were mad! What a height for someone scared of them!!!
CONGRATULATIONS! a REAL CASE OF "feel the fear and do it snyway".

Thank you so much for your great fundrasing effort.

Love

Mavis

Hi
Good to know you are ok,hope everything goes well on the last cycle.Let us know how you get on 🙂
My beautiful white carpet did not enjoy Slim being sick on it,have used bleach but still looks iffy,helped make my mind up,so hall and lounge will be replaced with laminated looking like oak.
Could do without this,but when you are stuck in…[Read more]

Dear Mari I am so sorry to hear Steves pp have risen But as Gill said hang in there they may yet go back down It sounds as if your doctor is quite laid back about it too Mari you are so good at supporting others on here please dont ever feel you are a burden , it couldnt be further from the truth and we are all here for you and Steve whenever you…[Read more]

Hi Gill

Daily mail Wednesday Money Mail you look for Page 55
E mail asktony@dailymail.co.uk
daytime phone number postal address and separate not addressed to the .offending organisation:-)
Hope this helps. Eve

Hi Gill I cannot believe the arrogance of these banks!! No wonder you are spitting feathers how dare they treat you like that after years of being loyal customers! If I remember rightly HSBC are runnning a tv ad campaign based on meeting local needs Perhaps you could start with your local paer and radio station stressing the local angle They may…[Read more]

Hi Dai
Have done it again haven,t I,Dai i am not talking about your ignorance far from it i look to you for advice support and anything else you can throw my way to help me understand this dreadful MM,and what is available, so very very sorry,its my ignorance of every thing,that,s in front of us.
So accept my apology .Eve

Hi Gill

Just found the post were you ignored me!!!!,how dare you 😛 LOL, some one forgot to tell you scousers are thick skinned but are softies in side 🙂
Seem to be missing post these days,but what I have noticed is that you are taking Stephen,s results very calmly.
Gill you must be worried,I have noticed those early morning post when you…[Read more]