[TinaParticipant]

Hi Susannah,

We haven't heard from you for a while? Hope Michael is OK?

Drop in when you have a moment.

Thinking of you both

Tina XX

[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

[mhnevillParticipant]

Hi Sue

So sorry to hear that you and Michael are having such a hard time. Do hope you both turn the corner soon.

Lots of love.

Mavis x

[TinaParticipant]

Oh Sue I was really worried about you both, thankyou for taking the trouble to let us know how you both are doing. What an awful few months you have been having although not just the last few months I know. Have you asked about Pomalidomide for Michael or is he too unwell at the moment for any treatment?
What about you? do you have a treatment plan yet? I do hope you have family and friends around you to give any support you may need. I know you are strong enough to keep the flag flying so dig in deep and don't lose your get up and go.

My very best wishes to you both.

Tina XX

[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

[tomParticipant]

Oh Sue

I am so sorry to read about your Cancer its a bloody bugger. I hope you soon get that one sorted out and the treatment you have is not as evasive as MM treatment is.

I know its not much of a help but we also have Double Cancer in our Home 🙁 Eliane (the young bride) was diagnosed with Breast Cancer In Jan 2008 and I was told I had MM in Jan 2009 nearly a year to the day 🙁 But hey ho Elaine has had her treatment R/T not chemo and a Lumpdectomy and not the full removal 😀

Good Luck for Tuesday for you and Hope something soon crops up for Michael, sending Hugs to you all "Daughters as well" Stay Strong

Love Tom "Onwards and Upwards" xxx

[brochoParticipant]

Dear Sue I can only imagine how tough the last few months have been for you both , it really seems so bloody unfair after all you have been through . I hope that radiotherapy does the trick , as you say its been caught early and from what I have read the success rate is pretty high. I can understand how poerless you must feel when there is no active treatment plan for Michael but hang in there sounds like your docs are on the ball . I may be in a similiar position soon as trials are my suggested treatment but I would be excluded from most because I am a non-secretor. Still all any of us can do is try and stay positive and keep going It must be terrifying for your daughters and mum to watch you go through so much but given a little time they will rally round so try not to worry about them too much We are all rooting for you both Sending you both a big hug and love Bridget xx

[TinaParticipant]

Hi Sue,

Great to hear you don't have to go through with Chemo – brilliant news. If you ever want to private email me don't hesitate – pa.davis@virgin.net

Keep on harrassing the medics for treatment for Michael I am sure something will come along soon. I know how draining it ca be but in the meantime stay strong and look after yourself.

Love Tina X

[mhnevillParticipant]

Hi Sue

Glad to hear that at least your treatment has gone well. Do hope something turns up for Michael soon. In the mean time tell him to take all then rest he needs so that, when something comes, he will be up for it.

Love to you both.

Mavis x

[cb97Participant]

Hi Sue

So sorry to read of your diagnosis and that Michael is 'going through it'.
Thinking of you, Michael and your daughters.

Hope things pick up
Love Clare

[susannahParticipant]

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

love
Sue

[TinaParticipant]

Hi Sue,

My email was down for a bit but is up and running now. Hope to speak soon.

Tina x

[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

[eveParticipant]

Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry Sue,I am just so aware that one day I am going to be standing where you are now,
where do you go from here!!!! is there any other drug that will help.Eve

[tomParticipant]

Hi Sue

Am so sorry to read that Michael is not able to fit the criteria to help him? how bad do we have to be to fit the bloody criteria :-S because for all intent an purpose we are all dying this Bloomim MM is at the moment a Terminal Illness so we should fit the criteria or am I just too thick to understand it all:-S

I dont know what would/could be the next step, might be that the Nurse on here might be able to advice us all on what could be the next step to force the Dr's and drug company's to hel us try and stay alive, I know this is a bit harsh but its bloody true like Eve I could be next and it makes me so bloody angry they could throw into my system anything even if the UK say its "Not been tested" bugger that if we have no choice but to use something that has not been tested for x amount of years what do we have to lose for gods sake:-S

(rant over and hope the above has not offended anyone)

Love and Hugs to you Both

Love Tom xxxxx

[Author]

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