Hi to you all
Thank you so much for your very kind thoughts – much appreciated. I knew it was back really by the fatigue and pain levels but we always hope for the best don't we?
Had Hickman in yesterday and will start chemo (PAD) on Monday so may not be on 'air' for a little while!

Best wishes to you all and fingers crossed that we don't…[Read more]

Hello Carol,

So sorry to hear that your MM has made an unwelcome return. My husband Phil has just finished PAD as his initial treatment on the PADIMAC trial which is trying to see if using Velcade upfront could delay the need for a SCT. I am not sure if this PAD would be the same dosage as yours but Phil had six cycles and he did not have too…[Read more]

Hi Keith

I hope this works for you when i was at the MM info day in London they were talking about third and fourth sct i wonder if you could get a referal to to Kings or Uch it was the consultants from there that suggested it they also prescribe drugs from the Rare cancer fund if needed
which included pomalidamide
Regards Jo

Hi Ali

Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.

Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points…[Read more]

Tom I have to say it,you are as bad as Slim,

Slim was being sick and I went out to the desk and spoke to the doctor who said he could go home,as long as he was not sick, mhhhhhhhhhhhh.He had told her he was not being sick earlier,I told her," he tells lies",who did she believe,An ex marine who could look you in the face and lie.

I rest my…[Read more]

aww Gill

Am sending you HUGS lots of them((((((()))))))).

I bet its hard to cope but am sure you know you have to, I cant tell you it will get better as i haven't been through it, but I show/read out these posts to Elaine (i think am getting her ready sad in it? )

Much Love and many thoughts from one teary eyed Tom xxx

Love Tom xxx

Hi Sue and Michael

Am sure that at anytime in anyones illness you are never wrong in asking Q's it may seem silly to you but if you are thinking it then its imprtant to you, so i would say ask away and get answers it might not alter the outcome ?? but trying and knowing is better so ask away
Thinking of you both

Love Tom xxx

Hi Vicky and Wide awake Colin 😀

Its Going Good you two (even though it dunt feel it or look it) the Dr wouldn't say "Home at week end" if he thought it was not a Doable 😉 If I remember correcltly I was still Ill a day or two before i was shipped off home and was even sick in toilet the day I came home (i dint tell them) but took anti…[Read more]

Hi Carol
Aww am sorry you have had that MM kick back in 🙁 but hey am sure your Dr will get something to throw it to the back of your mind pretty soon 😎
Stay Strong.

Love Tom "Onwards and Upwards" xxx

Hi Chris and Lena

Its working well and it wont be long stick with it and you will soon be home, but trust me you are still going to need to be looked after for a month or so when you are home but the wait will be worth it 🙂

Keep Well

Tom "Onwards and Upwards" x

Hi Keith

Well wot a to do as the saying goes 🙁

Am sure you kn ow I say am a "If My Dr is smiling am happy" well that is because I trust my Dr and I know if I need to know anything its him that I see, and if its My Cancer Nurse Helen I see and need to know more My Dr is in the next roomits a case of waiting till he has done with who is in…[Read more]

Hi Eric (am pleased that OUR Eve Misses nowt Lol)
And am with Eve, stick with the trials I am on nowt at the moment and still in remission 😀 and mine was just CDT then SCT all in 2009.

Tom "Onwards and Upwards" x

Hi Phil

Think its all been said Nowt normal in this dept so not one shoe fits all, I never ever bothered with my PP nuets or anything els i just wanted to see My Dr with a smile on his Face and to be fair that worked and still is for me 😎

Keep well and stay Fit

Tom "Onwards and Upwards"

Hi Keith

I cannot answer any of your questions or give advice on Trials but just wanted you to know tha tI am thinking of you and hoping all goes well for you tomorrow and you get your questions answered

Love Jean x

Hello Stewart,

I am sorry you have joined us on this forum but it is a great place to get advice. My husband Phil and I are quite new to Myeloma as he was diagnosed in May this year at the age of 43 so we are still learning everything as well, it is very confusing! I don't think the actual level of paraprotein in itself is a problem, Phil was…[Read more]

Hello Stewart

Well a very bonny welcome,and congratulations on your new baby:-)

Well MM is the last thing anyone needs or wants,but saying that on here you are going to see and hear lots of people who live with it for many years,so you will learn to cope with it.

First may I say forget that diet,you will need all your body to sustain the…[Read more]

Hi Keith

You sound very down,and who can blame you,I would agree they know the results,the meeting will be to decide the next treatment,in some ways they are trying not to leave you in a state of not knowing,but they forget,you become an expert on yourself.My advice is look on here at all the trials taking place in you area or not,and go armed…[Read more]

Hi Chris
Sounds if things are going well,they have taken your tube out,well well they must think you will not need any extra,s to help you improve like platelets.So that must be good,when you start feeling better you tend to want it to constant,well everybody is going to tell you it will take time,its something you cannot rush,if you stop and…[Read more]

Hi Carol
I am so sorry Carol,cannot help with PAD,Andy is the one to help you as he had PAD but it did not work for him:-(

Your right,you do not have to put on a brave face here,we do understand,although Slims in remission,the brain says when do we have to start going through this again,never said at home but the thought is there,then I give…[Read more]

HI Eric
Hello and welcome.You must be wondering why you have not had any reply,s???

Well if i may explain,because you went into an old thread,although it shows a posting it has come on screen in the middle of an old posting.The best thing to do is ,log in go to the first section,which you did,then scroll down to start discussion ,then you can…[Read more]