[DebsParticipant]

Oh lovely Bridget,
I'm so sorry to hear that your instincts were right…..life is so unfair and you so don't deserve this.But as always, you are handling it with an inspirational grace and humour and that is a lesson to all of us.
Good luck with your appt next week – I hope they get a great concoction that beats the b*****d!!!
Lots of love
Debs

[DebsParticipant]

Hi Keith,
I think I've missed something with you (haven't really been on here since my SCT in July!) but I'm glad to hear that you're home where you belong. Hope that you can stay there and stay well…..that sea air should help no end!
All the best
Debs x

[DebsParticipant]

Sarah,
I am so so sorry to hear that Gordon has passed away. Wishing you much strength in the coming days, weeks and months.
Thinking of you
Debs x

[DebsParticipant]

Hi Helen,
Haven't been on here for ages, but spotted you're due to go in tomorrow for your SCT and wanted to wish you all the best. I came out just over a week ago from mine (Day 25 at present!).
I was recommended the icecubes but was too embarrassed to ask for them as my consultant was dismissive. I got lots of ulcers in my throat which were horrid for eating, so I would recommend asking for them the 10 mins before you have the mephalan, while they are giving it to you, and for 10 mins after….I think that's what they do at some hospitals. And then just have ice lollies when you can….my hospital did offer these if you asked.
I truly hope it all goes well and you get out….take it easy, both in there and after, and listen to your body….it is a slow recouperation, but I think if you do what your body says, you will feel much better with it.
Good luck and stay in touch with us all if you have the energy.

Debs xx

[DebsParticipant]

Thanks Keith!
Like you, I've lost a little weight since the steroids stopped and have this feeling that I may lose a fair bit more in hospital….they brought my dinner in earlier….quiche that was half uncooked and oven chips, again half uncooked (I don't like them at the best of times!). And while I asked for jelly, I got some sort of trifle. Hmm, the tray went away with most of it still on it!!
I'll try to keep posting until I feel really rough….
If I don't for any reason post before you go in, good luck with your SCT too!!
All the best
Debs x

[DebsParticipant]

Hey Lorraine,
What was the mouthwash called? Need to ask for it NOW!!!
Thanks
Debs x

[DebsParticipant]

Hi John,

I was in your position when I was diagnosed in July 2009. I gave in to the treatment option in November 2010 but I have to say, I wonder if I gave in too soon. It has been quite hard so if you don't have to do it, don't push for it. They will do it when they think they need to.

I'm currently in hospital having my SCT….hoping to get off the drugs asap!!

Good luck and take care
Debs x

[DebsParticipant]

Oh it's definitely not just you guys! Loads of us (esp women it seems) have put on weight….I've put on nearly 2 stone and gone up one and a half dress sizes. Very depressing. But a little of it has dropped off since I came off the steroids in anticipation of my SCT on Monday. And I hope the rest will come off with the SCT itself….surely 2 weeks of hospital food will be enough to make anyone lose 2 stone!!

From what I can gather, go with it, and then worry about it afterwards! It is hard dealing with the funny tastes and stuff, and if eating is what helps you deal with it, then go for it….be happy while you're taking this stuff is what I say…it's why I've kept having the odd drink throughout (when I've felt up to it!)

Good luck
Debs x

[DebsParticipant]

Hi there.

I have been on the same trial and got randomised for the velcade too. I had about 4 cycles and then was stopped as I've had neuropathy since the beginning but it started to get worse and they wanted to stop. BUT, it has had good results and got my pp down from 28 to 8 (possibly less but they forgot to take the reading last tuesday so I have to wait till I next go in!)

I found velcade harsher than revlimid, and was quite wiped out…often in the week off treatment, which you wouldn't always expect!! But if your mum listens to her body and rests when it tells her, hopefully she will be fine. Just get her to tell them ALL side effects.

I know the feeling about the SCT, despite being pleased to go to velcade as it would get my pp level down, I was slightly gutted not to go to SCT. But now I am and it really isn't that long…..

Good luck to you and your mum
Debs x

[DebsParticipant]

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 him to play a part as he doesn't want to think about the end.

I ordered the Winston Wishes memory cards a little while ago but they have sat at the back of my wardrobe…..I think I may get them out tonight and have another go at them!

I hope that it is just a blip for John!

All the best
Debs x

[DebsParticipant]

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 does sound like things might get tougher before they get better, but as everyone else has said, you guys have a really good fighting spirit, so keep your chin up, and when you're finding it hard to do that, come on here and we'll try to help you to!

With lots of big hugs and all my thoughts
Debs x

[DebsParticipant]

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 effects got worse it would be hard.

Just something to bear in mind…..

Debs

[DebsParticipant]

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 cramps!!! lol!!

All worth it if those blasted figures keep coming down 🙂

Debs x

[DebsParticipant]

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 numbness in my toes. Nothing I can't manage (like you say – you see, us women can me macho too ;-))

But their comment to me was that sometimes the effects of velcade can be important so it is important that if you get side effects that you wouldn't want to be worse, that you reduce the dose or stop. I don't have bone damage or limitations at the moment, so am pretty lucky, and I think they started treatment with me on the basis that I would (hopefully) go back to leading a pain free life but with no pp's once I'd had a transplant. So if I got left with PN all my life, perhaps we'd question if we'd done the right thing.

Anyway, don't know if this helps or just sounds like a ramble (dex day??). But don't let the discomfort get too much…..sure it wouldn't be nice.

Good luck and hope things improve with the drug change 🙂

Debs xx

[DebsParticipant]

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 perhaps I should think myself lucky!

I know what you mean about house husband…..I found work ok with revlimid (although I have since stopped) but it is doing the stuff around the house that is harder….esp the kids!! Just try to keep listening to your body and when it says stop, leave that ironing alone!

Hope you got to sleep in the end….I'm having a bed day today….first time but the velcade has got to my legs!!

Take care
Debs x

[Author]

Posts