Hello Meike and Christin

Glad to see your dad at least got out on his good day,Nhs supplied me with wheelchair for Slim,but I bought a light weight one from Halfords much easier getting into car.I know men are not keen on using it,but we would not be with out it now,and Slim has got use to it.yesterday we went out for 5 hours just packed the…[Read more]

[b]eve[/b] – thanks so much! great advice were going to start writing things down and planning questions more in between appointments.

[b]Dai -[/b] lecture gratefully accepted!!! You have a fantastic way with words i love it! Dad had mantras before he was even diagnosed, being a surfer the phrase " being on the path" he is well known for and…[Read more]

Thank you for your best wishes. My bone structure Carol is no longer like my photo. The Dex round face has totally got rid of that 😀 Back to hospital tomorrow for next Velcade injection. I bought two wigs Min, one for the professional look and one for the glamour look, although the glamour look is now a thing of the past as I have gone up 3…[Read more]

Ah, sarah…

Now that is a sleep pattern and way of life that I understand and relate to.:-| Life is full of gaps in the middle at the moment. :-/

Dai.

Hi

Hope everything goes well – thinking of you.

You are so pretty I think you will look good with or without hair – lovely bone structure!

Best Wishes

Carol xxx

Hi Kay

You must be so disappointed ,its not easy when you build yourself up mentally to have the treatment,i know you started treatment in January,many of the others who started treatment about the same time, are now approaching sct.
Slim started in February sct has not even been suggested!!! will be end of July before we see…[Read more]

Hi Min I am so glad you are enjoying your gardening , if anyone deserves a break you do!Perhaps Peter needs a kick up the backide , I bet he doesnt even realise he is being a brat!!So let him fend for himself a bit , even if its only a few hours and I am sure he will realise how lucky he is to have you looking after him. You said you think us…[Read more]

Thank you Sylvia… its good to know that the procedure has finally broken ranks in the UK.

I have mentioned elsethread that I requested subcut from my consultant at Nottingham and she said I may well get it during my treatment but nothing as yet. I have just finished Cycle 3 with a consultancy a week tomorrow followed by Cycle 4… I will…[Read more]

Thank you for your replies. My hair started falling out on Friday. They told me it wouldnt but I think it may be due to the chemo they gave me in Barts before stem cell harvest. Its ok I had my wigs and scarves ready. Going for the shave tomorrow as my partner is complaining of the hair in the bed ha ha.
Kay x

Thanks all, its good to know its not 'just me'… not that I thought it would be mind you. >:-(

Min, you are a gem, truly… I can't help but wonder what Janet is thinking sometimes… I too am a model patient (In) and I imagine not so (Out)… I know I exasperate her at times… even when Dex is not on the menu. Janet spent the day at our…[Read more]

Hi Dai like youI have not had a full nights sleep since being diagnosed 5 years ago!! Apart from the fact that I have to sleep in a semi sitting position I rarely manage more than 2 or 3 hours a night! Mind you I can cat-nap with the best of them ,and Jeff watches me like a hawk sometimes ( I have been known to drop off despite having a cup of…[Read more]

Hi Colpot

Am sure your story will give us al hope that the light is at the back of the tunnel, well done and good luck

Tom "Onwards and UpwardsW

Lol its a good un Gill, nor can I cee whi they av bloked it ether ha ha.

Tom xx

Hi Carol

Well a well done you for getting more back that you felt you had lost 😀 its something that would have come natuarly to kick downon the horse to let it kknow who is the boss, well done you.
Good to hear you are back into taking not just your own but Hubbie's horse out, its anothe step forward:-) to as normal as we get with MM :-S…[Read more]

I have just completed Cycle 3 of Velcade and I pressed my consultant (one of the UK's leading lights on research and innovation) about subcut Velcade… and she told me it was coming and not to be surprised if it started while I was still on treatment.8-)

Nothing as yet though.:-(

Dai.

Hi Onlyme,

I had my SCT following an excellent response to CDT but unfortunately, for valid reasons that I can accept (reluctantly), I relapsed after only 10 months, so counted as a failure to launch.

I am now on Velcade as a tertiary treatment for a relapsing patient. I only scraped enough stem cells for one SCT and no one's mentioned…[Read more]

Hi
No wonder your emotional – after the ups and downs you have had just lately I think your allowed!
My lead up to transplant didn´t always go quite to plan either and I feel for you having to take the dex again – bad enough that your hyperactive (I was rather aggresive too which is really out of character for me) but it was knowing that when…[Read more]

Hi Debs
I wonder if we are both on the same trial Myeloma 11? I have had my transplant and am back on Revlimid now (looking back I think I tolerate this better than I did the Velcade that I had for a couple of cycles prior to the transplant.
Anyway, hope the side effects are wearing off – I do get tingly feet and hands but not as badly as…[Read more]

Hi
I had Velcade to get my nasty boy count down for a couple of cycles before my transplant. I coped quite well on it – expect your mum is on it by now and you are finding out for yourselves.

Anyway, good luck to you and your mum – I´m so pleased you have each other.

Very best wishes to you

Carol xxx

Hi Tom

Hope you are keeping well and enjoying your remission – we are lucky to be here arn´t we?

Thanks for a lovely, cheerful and positive note – so very welcome! Just to let you know that I rode my husband´s horse yesterday who hasn´t been out of the field for a year and didn´t really see why she should have to leave her buddy (my hor…[Read more]