[KevinBrownlesParticipant]

Hi everyone.. apart from the sheer shock of seeing more than 0.1mm of snow outside (we just don't get any round here till Feb/March), I'd have to admit I've felt better in my time.

This wretched disease has now arrived at my bowles and is causing problems. I'm shedding weight downstairs rapidly, whilst retaining (if not actually increasing it upstairs). I'm still right down to 59Kg from my more or less usual 68Kg and my legs look a bit skeletal, to say the least..

I almost feel like I did after my auto SCT in Dec'06, but with hair! The official verdict on my allo SCT is that it doesn't seem to have worked, which is a shame, as I had too many SCTs which could have been put back in me, but of course, my own SCTs are as alien to me now as all yours! And that always was a gamble. Never mind, 2011's a brand new challenge for me. All the best. And it's always good to hear all your news. Kevin

[GayeParticipant]

[GayeParticipant]

Dear Kevin – I have tried twice to reply to your posting Not So Good Today but for some reason it won't send. Rather than try on your posting again I have started a new thread so that hopefully I can get my message through to you.

I was so sorry to read your posting about your health at the moment and the confirmation that your allogenic transplant did not work. That is not good news to receive. However I was touched by your comment that the decisions we take about our treatment are often a gamble – some pay off and some don't. I too took a gamble with a clinical trial which left one or two unwanted results but I don't regret it because there is no point. I admire your wish to want to go for something you hoped would give you a longer life – I think it was a brave decision and I am sad for you that it didn't give you the result you wanted.

Kevin, I know you were on Revlimid – are you still on this? I remember when we met at the Myeloma UK workshop in London, you told me that you were always positive and nothing I have read from you has shown me otherwise. Yes, I think there may be a few of us for whom 2011 brings its own challenges, but I know and I think you do too, that the wonderful people on this discussion board will be rooting for us all. I send you all the positivity possible Kevin and good luck.
Love, Gaye x

[brochoParticipant]

Dear Kevin I can only imagine how disappointed you must feel after going through so much .I do hope your bowel problem can be sorted soon.As Gaye says in her post your positivity shines through so it wont be long before you are top again lots of love Bridget x

[EvaParticipant]

Dear Kevin,
I wanted to send you my very best wishes. Is there any chance you could have a delayed reaction to the transplant? What other options are the oncs considering?
I'm in the north of Scotland, at home. My place is a railway station and there's lots of snow all around. I'm including two photos for you – one of our place from the outside and the other is the view over our kitchen table. Both were taken today.

[tomParticipant]

Hi Kevin
I like the others are sorry it never worked:-(
But I know you will give it H E L L all the way, we do things with our MM to hopefully help us get remission and some like yours doesn't work, the joy is that new things keep comming through all the time 😀

I know you will keep Strong

Best Wishes

Tom "onwards and Upwards"

Oh I can use the word H E L L if its in big letters and with a space lol

[mhnevillParticipant]

Hi Kevin

As a new girl i want to add my good wishes and commiserations to evryone else's. The willingness of you "old stagers", as it were, to share so honestly is a real help, believe it or not.

I do pray that something else is out there for you. I keep reading about these new treatments for refractory MM (hope I got the term right!)
Trouble is, this illness does constantly make you think of your own mortality, but it seems as if, the amount of fight and positivity folk have really does make a difference, and you obviously have that Kevin.

All blessings.

Mavis

[KevinBrownlesParticipant]

Thanks for all your usual support, it means a lot me too!

You win a battle but the fight goes on and I'm seeing 'my man' again next Wednesday with my usual and annual Xmas question for him (can I have a glass of champagne on Xmas Day please?). Hopefully, he'll say yes!

[KevinBrownlesParticipant]

Thank you Gayle.

[KevinBrownlesParticipant]

OK, coming up against Scotland in a picture comp was always going to be a second place only,for me wasn't it? I do concede that probably mostof you've had more snow than me this week. But it still hit -5 last night!!

Stay in and keep warm!

[shirleyParticipant]

Dear Kevin,hi how are you today,hope you are feeling a little bit better,. Kevin i'm so sorry to hear that your allo sct failed you,not the type of news one wants to hear before all christmas festivities begin hey.Have they said what they are going to do next and can you have another allo done or no.And did they say why the allo failed. Sorry to bombard you with questions when your not feeling to good. I'm having an allo sct 2wks on Tuesday,and i'm just starting to get the colly wobbles again,i am nervous,but i know i'm in good hands,. And like you Kevin i'm hopeing to have a glass of champagne when my husband and family come to visit me yumm yumm. I'll raise my glass to you Kevin on christmas day. I do hope you start to feel better soon,you take great care Shirls x x x

[PerkymiteParticipant]

What tough news to take Kevin. Just keep going buddy, keep damm well going.

[AmelieParticipant]

Dear Kevin,
I am so sorry to read this. I wish you all the best. There are so many treatments now, I am sure something else will work better for you.
Love,
Amelie

[SharonGParticipant]

Hi Kevin
Sorry to hear that your sct has failed. I am also in hospital at the moment having picked up an infection. I am also waiting to hear the results of my mri I had yesterday on my hip. They think that I have either developed avascular necrosis from all the steroids I have taken, or like you my allo has failed already and the myeloma is back. Not sure I want to know, it terrifies me the idea that its back already. You sound so brave Kevin, I know I was hoping for a long remission from my allo and all the initial signs were good with my 3 month post transplant bmb showing a complete response.

Wishing you all the best Kevin

Sharon x

[GayeParticipant]

Dear Sharon – I am so sorry to hear your news. As yet you don't know if it has come back and that's perhaps the hard part – the not knowing. I can only say that I shall be thinking of you through this difficult time and hope for good rather than any unwanted news.

We seem to be going through a rough patch on the discussion board with our current situations, both patients and carers, plus having the coldest and snowiest November in yonks. Well today here in lovely Essex (no we are not all Essex girls and boys!) we have a lovely blue sky and some sun which I hope will take away our blues and the snow.

Nobody told me that dealing with myeloma would be easy and how true that is. Thankfully we have our discussion board friends to help let go and to all of us battling away I don't know what to say other than hang on in there and enjoy the good things we still have, whatever they may be. My favourites are children's conversations and our beautiful countryside.

Much love, Gaye xx

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