[susannahParticipant]

Hi Eve
Good luck for the week and all the best to Slim for his SCT Sunday

Love
Susannahx

[susannahParticipant]

HiDavid Thats the stuff we like to hear

God Bless
Susannah

[susannahParticipant]

Hi Bridget Its so good to hear from you, stay strong

Big Hugs
Suex

[susannahParticipant]

Dear Eve and Slim I am so sorry to read of you loss, life is such a b…ch

Love
Suex

[susannahParticipant]

Hi Tom Thanks for that, I am on facebook but dont go on there very often either, will give it a go

Love
Suex

[susannahParticipant]

Hi Debs I was really moved by your post and although I dont reply on here very often I do look in now and again. Michael my husband has never been on this sight, he to was very young when diagnosed and our girls not much older. Im the one who has gone to discussions groups etc, he has just taken his treatment,and tried to live as normal alife as he can, he doesnt even tell me when he has pain, but i know and im always there to support him, he does and he has over the years support MUK

I think everyone copes differently, I find it really hard sometimes and im not the one with MM, but Michael always supports me
I dont think its the board thats changed its new people coming along with new treatments etc I find it difficult to post now because Michael has been through all the treatments some have worked longer than others, some people want to know all the ins and outs and some dont. So its not a matter of not wanting to post or give support sometimes its very hard
God Bless you all

Suex

[susannahParticipant]

Dear Michelle My heart goes out to you and your family

God Bless You

Suex

[susannahParticipant]

Hi Tom and Eve I feel the same as you both. I dont blame the consultant, her hands are tied , but as far as the drug companies go its all down to the root of all evil, money, im sure they will say it isnt, its all to do with the safety etc of the patient, but I say if the patient is well enough to recieve the drug then it should be there choice to have it or not.

No Eve there is nothing, apart from high dose dex and chemo, thing is Michael never complains about being ill, he takes everything thats thrown at him , but when his consultant mentioned high dose dex he just looked at me and shook his head, I just dont think he would cope with it, its something, when he feels like it we need to talk about. It may be sooner than we think as she will be ringing us with his up to date PP results next week so we will take it from there

Sue

[susannahParticipant]

Hi All Just wanted to let you know Michael has been turned down for his last hope of treatment, he didnt fit the criteria for Pomalidomide ,although you would think having MM is criteria enough. It makes me so angry, it feels like we have taken a huge step backwards with treatment (after having a huge fight on our hands to obtain Velcade a few years ago) but this time its with the drug companies.

Much love
Sue

[susannahParticipant]

Hi Tina tried to send you an email but it wouldnt let me

love
Sue

[susannahParticipant]

Dear Bridget I wasnt going to post today until I read your post, what can I say im so sorry, I cant imagine how you are feeling, but I know one man who does. We also went to clinic today, we were told Michael does not fit the criteria for the Pomalidomide trial, so no more treatment.She did offer high does Dex but Michael could not get his head round it and we came home, and go back in a month. Ireally dont know what else to say except god bless Bridget

Lots of hugs
Sue x

[susannahParticipant]

Dear Tina Wish you lived nearer you are just the sort of person I could do with being around at the moment, my daughters are in bits, so its mum who is supporting them at the moment. Not all bad news had an operation last week they told me that it was early stages and hopefully have caught it before it has spread, this being the case I wont need chemo just radiotherapy know more Tuesday.

Michael has been offered nothing at the moment,all his consultant can say is that there may be other trials in the pipeline,he is still under two hospitals so at least they are keeping an eye on him

Thank you Tina
Suex

[susannahParticipant]

Dear Bridget Iwas so sorry when I read your post, ive been thinking of you alot recently. I suppose you are in limbo at the moment like Michael, Its not knowing whats next that gets to Michael he seems to cope with the rest.
God Bless
Suexx

[susannahParticipant]

Hello Tina So sorry i havent replied before but ive not been on the site for a couple of months. Not had a very good few months Michael came off the clinical trail back in November, hes not been very well since Christmas
had a couple of transfusions,his PPs have started to raise, but there is no offer of any more trials at the moment. He lost his brother suddenly just before Christmas, my beloved chocolate labrador Lucy died the day after, they say it comes in threes, I was diagnosed with skin cancer last week. So im afraid ive not had much good news to share, but tomorrows another day so onwards and upwards
Take Care
Suex

[susannahParticipant]

Hi

Just wanted to say a big thank you for all your kind replys. We are both seeing things diffrently today, Michael looks and feels so well at the moment, so we have decided to look forward to a drug free Christmas, the first in 4 years. We wont be seeing his old consultant again until January so were going to have some family time.

Thank you all once again
God Bless
Suex

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