Hi there Tony
Nice to hear from you. I am on the Myeloma XI trial too..I got picked for revlimid and had 4 cycles of this before I plateaud and moved onto velcade for 4 cycles. Between the 2 they brought my pp levels from 50 down to 8 and I had my SCT in July last year. 9 months on and doing fairly well bar a few more coughs and colds than usual.
I found that the revlimid had limited side effects for me apart from a v strange taste in my mouth that made everything, even water taste odd. I ate like mad to try to get rid of it which was a bad mistake as I piled the pounds on!!!
Velcade was a bit harder and that exhausted me at certain times in the cycle.
Good luck with it and shout if you have any questions
Debs x
Thanks Ellen,
Just need to stay in remission for a good 4 or 5 years or more and hopefully there'll be some trials in the UK by then…..or maybe we'll be even further along the line 🙂
Always good to have some hope in the pipeline!!!
Look forward to reading MUK's work on this next week
Debs x
Hi David,
Yes I think they could well be part of life. I had my SCT in July and have only really had 3 weeks since the beginning of December where I've been without any sort of illness (wish I'd been on the antibiotics you were on!!!)
Paracetamol and lemsip cold and flu are my lifeline these days!!! I keep them in business I think.
But perhaps Dai is right in saying it shows your body CAN fight them, even if not quite so quickly or effectively as before.
Good luck and I'm glad you're not feeling bad from the colds 🙂
Debs x
Does anyone from MUK have any news on whether this is a drug we should be excited about or whether it is too good to be true….first time in ages I have been positively optimistic about what could be ahead of us, but I am wary as nothing was mentioned about this sort of vaccine at the info day.
It's frustrating though that there is limited support out there. I just about get the ESA (although am waiting for them to question that!) but am not eligible for DLA as I don't need support with caring for myself – I can just about cook etc but we have a cleaner as I don't have the energy for that. I wish I'd applied for it when there was NO WAY I could work.
So now, I'm probably in that place where most people around me wonder why I don't go back to work, but like you say Scott, if I went back, I'd be permanently ill (and annoying the business!) and have no energy for any sort of life at home with my family.
Hi Helen
Think Paul has covered most things. I used to work in HR before all of this although it's been a while since I was on the advice side of things.
THey have a duty of care to see if you are fit for work….they shouldn't be asking you back if you aren't, but as with all business, are likely to take the view that if you are fit for work, they should have you working rather than pay you sick pay!
If you have a nice HR person, I would hope they would just ask how things are going, how you are feeling, what your thoughts are about returning, what you would need in place to be able to return to work (if you are capable). If you are wanting to go back, I would seriously push for a phased return so that you can build up to your old hours. That way you will see if your body can cope with the job.
As Paul says, if you aren't fit for work and continue to be unfit to work, they may start to move you towards the early retirement on medical grounds. That can get a bit more tricky as it depends on your company policy etc.
I am sure it will all go fine (I was always very nice to people when I had these meetings:-) !!) but if for any reason it doesn't, let me know the details and I can get you some advice – my brother in law has an HR Practice and trained as a barrister too! He's normally happy to help my MM buddies!!!
Take care and keep us updated
Debs x
Hi Kirsty,
We'd all be lying if we said that the SCT was a lovely experience, but you do get through it!
The main things are to keep people away as much as possible for the 3 weeks you're in, and if possible for a month or so after. I only let my husband, and one of my 5 siblings visit….my parents and the rest, I made wait. I thought it would be awful not seeing people, but to be honest, I didn't really want to see anyone else and most of the time, I didn't want to see them either!
Take in something to brighten up your room and some dvd sets so you can watch in short bursts!
Lots of pi's and clothes to change into each day – it made me feel so much better to get up and dressed each day.
And when you get home, just REST lots and lots, and SLEEP when your body tells you need it…
There are probably lots of things I've forgotten but these are the things that spring to mind 🙂
Take care
Debs x
Hi Kay,
I'm with the others…think you are amazing to have gone back to work so much. I think about it and then know that I can't when i get ill from just overdoing it with the kids and looking after the house.
I suppose where you get joint pain, I get coughs and colds and exhaustion.
Perhaps think about doing a bit less if your work are accommodating? You owe it to your body to try to be kind to it or it might stop fighting for you!!
Take care
Debs x
Hi Dai,
I don't tend to post regularly anymore because I find it all a bit tough at times.
Post transplant, I have been pretty much constantly ill with coughs, colds and illnesses. That alongside trying to run my family in some sort of normality,and organise my ball just takes it out of me, so I suppose that is perhaps the same for others.
I do look on occasionally, but the problem for me is that it doesn't always help me and sometimes drags me down when I am struggling to keep going anyway. I know you guys are amazing in the support you offer, but I think that people need to be in the right place to ask for help, and sometimes when in remission, just need to try to stay positive by forgetting as much as possible about the MM.
I am seriously considering taking a massive step back after my ball in November, and trying to almost pretend I don't have this bl*ody awful cancer – I have tried to support the charity and a number of individuals over the past 3 years, and hope I have done that, but also feel that I owe it to myself and my family to try to be as happy as I can be for as long as I can be…and that doesn't seem to be happening when I spend too long on here….does that make sense?
I know it's a hard one as this is one of the first places I come when I need support – maybe I'm being very selfish. But my five and seven year old don't understand when they see me sad or in tears because I've read something else that makes me realise the fragility of our situation.
If it helps, I don't think the family feel has gone….I think you just have different people contributing now to those who contributed 2 years ago.
You guys are all great…..I will try to be more involved for the next few months if I can….
Debs x
Bumping this post up again so that people know how to get hold of Scotty if they want to join the extra Under 50 site….as she says, the language is a bit riper but it is another type of support. x
Hi there.
Just couldn't help but come in on the alcohol question 🙂
My consultant said when I was on revlimid that I could have a couple of drinks but that I probably wouldn't want to!! Boy was she right…couldn't even face champagne! Then when the revlimid stopped working (my pp had come down from over 50 to 28), I went onto revlimid….I drank a bit more on this on the one week when I felt well enough to. Dai, I drank on gabopentin and oromorph?? I don't think it did me any harm but I think you just need to be careful the first time to see how it affects you? It all seems so personal…..but to be honest, I think I'd cry if I was never allowed to drink now!!!
Andy, possibly more importantly, when the revlimid stopped working with me, I was randomised and had it been picked differently, they would have put me straight through to SCT with a pp of 28. I was worried at the time, but my consultant at the Royal Marsden, didn't seem to think it was risky. Perhaps I should ask her now (further to having my SCT after velcade and my pp coming down to 8) whether she would have really been positive or whether it was just to get me to go ahead with the trial :-S
ANyway, I really hope that the revlimid works well for you and gets those pp's a bit lower still.
Take care
Debs (with a nice glass of ice cold white wine in my hand on a Sunday afternoon) xx
Hi Kirsty
Welcome! Not that you want to be here. There are lots of us here to support you….I don't come on too often as I'm just post transplant and need a bit of a break occasionally whilst in remission.
I was 34 when I was diagnosed with smouldering myeloma, and then started treatment in 2010, just over a year after initial diagnosis. I had 9 months of chemo on the Myeloma XI trial, a SCT in July last year, and would say I'm now doing pretty well and at about 90% full strength.
The advice everyone has given you is great. Stick to this site, try out the Under 50 site that Scotty has set up too (if you look at the Under 50 on here, you can send Scotty a message and she'll send you the link). Each site offers slightly different things…here you get a wider breadth of experience from lots of people that care very much, on the other site you can let rip in a way that this site won't let you unless you use lots of stars and hash signs!!!
If you want to email me, please do, as I know sometimes it can feel a bit open on here. Though I would say, that everyone supports you 100% if you do 🙂 My email is gascoynedeb@gmail.com
Anyway, take care and don't worry about burying your head….we all handled our diagnosis' in different ways and you have to do what is right for you 🙂
Deb x
Glad to hear that you're getting better…and enjoying the shorter look! I have to say, I was v positive until I went rollerskating with my 7 year old on Friday and one of her friends told her to 'give your dad a drink'…..hmmm, Nick was nowhere to be seen which just meant that he thought I was a bloke! Now, do I take it seriously?!
Thanks so much for the offer of prizes! I really appreciate it! I worked out that if everyone I knew on Facebook gave me one thing, I'd be absolutely sorted…sadly it doesn't seem to work like that! I would say that for the prizes, it would be useful to have them by the end of September if possible, so that we know what we are working with and what we need to get….hopefully not very much!!
Take care Helen, and thank you again for supporting us 🙂
Debs x
Ah thanks Helen. I'm sorry that I haven't been on here more but what with the kids, redoing the bedroom and trying to organise the ball, life's been so hectic….and perhaps there has been a small part of me trying not to let myself become too bogged down with having myeloma. Selfish I know.
My hair is staying short for a while….hopefully people haven't been lying when they've said it suits me more!!
Anyway, raffle prizes can be sent to us at Glitz and Glamour Ball, 484 West Wycombe Road, High Wycombe, Bucks HP12 4AH. Everything welcome – we want to get over 150 prizes for the raffle that is being done before the night, and the one for on the night!!
How are you doing Helen? Hope you are well
Lots of love
Debs x
Hi Bridget
I'm sorry to have read this….and sorry I haven't been on here for so long to have seen what you are going through. You are always such a strength to everyone, and such an inspiration….it is not fair that you are having to go through this.
I will keep hoping and praying that they come up with a new option for you, or like others have suggested that an old treatment comes good for you.
Take care
Debs xxx
