Aaahh, you've all made me blub! Angelina, I have a 4 year old and a 6 year old and am about to go in to have a SCT. I know it will be fine, but I have been thinking about doing memory books, scrapbooks and things too…I think they are wonderful ideas….I just wish my hubby was quite as supportive…..it's the one area I wouldn't be able to get…[Read more]

Hi Min,

I often read posts and don't respond, but I really wanted to write to wish Peter AND you, all the luck in the world on the journey you have ahead of you. This MM is just awful in what it does to Peter, and I hope that the plan they have set up, does what it is supposed to and that you guys get a bit of a break at the end of it.

It…[Read more]

Hi.
I'm at the royal Marsden in Surrey and can't fault it. The only thing I would mention is distance. I travel a 90 minute journey to my hosp and it can be tiring. It's not so bad when you're only going once or twice a month but I come in twice a week now. I'm doing ok on the treatment so drive myself and find it manageable but if my side…[Read more]

Great to hear you're feeling better and on the up! I have to say I agree….I can cope so much better when I know what to expect. I wipe out the week off so that I can just chill out now. And then plan a nice meal out and a few drinks at the end of that week when I finally start to feel better 🙂 Red wine of course….oh and g&t to help with the…[Read more]

Hi Dai,

Sorry meant to reply before but have been a bit caught up.

I'm really sorry you're suffering (even if in a macho way!). I'm on velcade too (with dex and cyclophos) and am currently just starting on cycle 4. I've had to have my dose reduced today as I've started to get slight pains (like shin splints) in my calves and more severe…[Read more]

Hi Mike,
Do you know what….it is probably quite good that you aren't caught up with figures….they're the bain of my life…lol!!! But that's great news that your team are all really pleased with the progress.

I wish I got the dex effect sometimes…could do with the energy rush…but then again, I don't get the 'devil' dex effect either so…[Read more]

Hi mike. I,m not surprised that you took some time out…there's a lot to take on board at the start. I'm glad to hear it's all started off ok though! I'm now on velcade but have a feeling it may not be respondig much now. Got 3 cycles from revlimid and looks like it could the same with the velcade. Find out more in a couple of weeks. How did u…[Read more]

Dear, dear Tina,
I have only just come online and read this and wanted to say just how very sorry I am for your loss. When I met you it was so apparent what a strength and support you were to him throughout your journey with this disease. My thoughts are with you and your family so much and I hope and pray you have many many happy memories of him…[Read more]

Hi eve

Just wanted to say firstly to keep strong with slim and remember all the experts you have working with him. He sounds like a fighter too so hopefully you'll look back on this in a month and wonder what the worry was about …I hope so as you're v inspirational people!
As to the complaint , I'm with Tom…..would take awful lot for me to…[Read more]

Ah Sharon,

You'll be fine hon. HOw come you have to go in for a few days though??? Remember to call me if you need anything at all….even a rant!!!

Take care. Lots of love
Debs x

Hi Sheff,

Like the others on here, I am so sorry to hear about the loss of your father. I think it hits us all hard everytime that we hear of someone passing away, but it is even harder when you know that the family have suffered so much with the way it has happened. All my best wishes are with you and your family over the coming weeks and…[Read more]

Good luck from me too Dai…hope you manage to persuade him….I'm wondering about asking Prof Morgans team when I go in next week as I already have PN from velcade…mildly I think (numb feet, and now slightly painful calves and arm muscles!), but I'm only on cycle 2 and you don't normally get anything till cycle 3 plus.

But I think I know the…[Read more]

Aahh, Gaye,

So sorry to hear that the pain is still bad for you. Must be so hard….bad enough dealing with the damned disease anyway, without that on top of it all. But I am really chuffed to hear that all is going well with the pomalidomide…that is good news!

And just to join the…[Read more]

Hi Jonny,

How are things going with you? Hope treatment is going ok and you're not suffering too much.

Just wanted to catch up and check in on you!!!

Debs x

Hi Mike,

Just thought I'd see how you were doing as you must be into your second week of revlimid now? How has it been? Any major side effects? Meant to mention that your taste will probably go up the spout…but you probably know that by now! I remember my consultant saying I could have a glass of wine if I wanted but that I wouldn't…didn't…[Read more]

Hi Andy

Sorry to hear you got the diagnosis so young. I was 34 when diagnosed in 2009 and felt like it was really unfair!!
Hope you're being looked after well…think you'll like the under 50 site though if you email Scotty!!

Debs x

Hi Keith,
How are you feeling about the transplant? It's good to hear that the velcade has worked for you…it seems to be doing the same for me, so I may not be far behind you with a transplant date!

Bridget is a gem isn't she….most definitely one to count on and we shouldn't forget that! And I'm really sorry if you felt that none of the…[Read more]

Oh Bridget and kay,

So similar!! I've gone up 1-2 dress sizes no matter what exercise I manage to fit in on the odd good days I have. And whilst I eat, I don't feel I overeat massively….occassionally yes (it is that taste thing isn't it Kay….awful!) but not loads. I am hoping some of it is water retention.

And like you Kay, everyone…[Read more]

Just a quick update for anyone who is on the Myeloma XI trial/ interested in Velcade treatment.

I've just finished the first two treatments of cycle 2, and got my cycle 1 paraprotein results back….have gone down from 27 to 15, so I am over the moon, especially as my consultant had warned me that I may well not see a decrease in the first…[Read more]

Thanks for your responses guys!

I will let her know what you have said and perhaps suggests she just checks out normal sinus remedies that DON'T have ibuprofen in them

Cheers
Debsx