Thanks guys
It's so hard to know. Helen, I know they might keep it on me forever, but my hubby is concerned (he used to work with osteoporosis drugs so knows a bit about bone regeneration) about the fact that my stopping it from doing its job properly, it could cause longer term issues for those of us who may live with myeloma for many years (please god!). So I worry that perhaps I shouldn't let them keep me on it for too long – Tom what was your consultants reasoning?
Mavis, yes the two years have flown by…it seems an eternity ago in many ways! I am so grateful for having that time though. And hope for many many more years.
Thanks for your answers
Debs
Hi Lynne
Just to say that I am someone else who has been on the Myeloma XI trial and I had revlimid, followed by velcade and then SCT. AS Becky said, it isn't a lovely experience (probably no surprise there!) but you get through it and then look back amazed at how far you have come!
I am on revlimid maintenance now and get hot flushes regularly….although part of that for me is due to going through an early menopause.
Really happy to discuss anything you want to about the trial, treatment etc. Bear with me though, I'm not always great at replying quickly as I have a 7 and 9 year old and work four days a week!!!!
Take care
Debs
Hi SP
I started writing a reply to this a little while ago and then lost it.
So here goes again. Firstly I am really sorry to hear about your dad….I can't begin to imagine and like with Dick, I am in your dad's position so it is something that always worries me. I have two children age 7 and 9….they were 3 and 5 when I was first diagnosed. I have never said 'why me'. My fear isn't so much for me (although of course I don't want to get seriously ill!) but for my children as I don't feel that children should have to go through that heartache and pain – like you have had to.
Your offer to help with your experience is amazingly generous of you, especially when you are still going through your grief process. I am sure lots of us would love to understand which bits worked well with you coping throughout the years and which bits you wish had been different. Although every family is different, and everyone copes in different ways.
Blimey, I haven't written on this site for some time but felt I really wanted to reply to you today. But I sit here writing with tears falling down my face….it reminds me of how unfair this is on the people too young to understand properly (as much as those who are old enough).
I think that is part of why I have moved away from this site and only pop back in these days. I find it too hard to live every day in the shadow of my myeloma and so I try, whilst I'm in remission, to live my days as I did before diagnosis….maybe that way the kids won't really realise what is going on until I have to go through my second transplant.
Good luck SP and thank you for sharing.
Debs xx
Good Luck Sarah….you'll be fine! And well done for doing cake sale at work…very impressive mid treatment 🙂
We used World First….no health issues to claim for thank god, but we did have a broken camera which they paid for no problems.
Debs
Thanks Babs and Helen
Babs, I am just not sure whether it is just the revlimid because of the fact I've been on it so long without any side effects. Helen, I think you might be right about slap cheek….sort of didn't want to face into it. I'll see if I'm the same tomorrow and perhaps get a GP appointment if so. I've now scared myself reading up what it can do to people with no immune system if they don't get it treated!! And I've been really tired too so it could well be that. Given that my neutrophils are down at 1.5 (up from 0.5!) I probably ought to be sensible for once in my life 😉
So I think a trip to the GP might at the very least put my mind at rest.
Thanks for your help as always
Debs x
Great news Jean….really pleased to hear that it is all going so well….hope Frank is chuffed too 🙂
Deb x
Hi Michelle
I suppose it could be linked. My transplant has meant I've definitely gone through an early menopause with hot flushes and all that but I suppose this could be a new and different aspect to it. It's just come very much out of the blue!
Thanks for the thought though…may kick me into action re going to speak to my GP about it all.
Thanks
Deb
Hi Rebecca.
I'm 38 and was diagnosed at 35 but haven't heard that one before. I think that it is individual and is probably more to do with your genes than your age as to what impact it has on your body. But I don't know for definite. Have you tried asking the Myeloma Infoline?
I'm not sure if you're asking for you or someone else, or whether this helps, but my myeloma (crossed fingers) doesn't seem to be aggressive so I hope to get a long time of remission from the transplant I had nearly 2 years ago.
Debs x
Just to say that I had my zometa last time over 30 minutes and it made the side effects much better than when I had it over 15 minutes. (Previously I'd had no problems with it).
I've been on zometa for about 3 years now (although I came off it for my transplant in 2011 – blimey it doesn't feel that long ago!), 18 months since transplant. I spoke to my consultant last time about having it long term given that it changes the way the bone turns over. We're going to discuss it again in 6 months as I think it could be an issue for younger patients if they are kept on it too long. But that is only my naive view and has no medical background to it at all! Again it is all about weighing up the risks of taking it, against the benefit of it being thought to prolong life.
Deb x
Oh Jean
I'm a rubbish friend! I didn't even realise that Frank had gone in as I've hardly looked at the site recently.
It sounds like he's on his way up though and you'll be surprised how it will change now….probably not too long before he'll reach that magic number.
How are you doing with it all? I always felt for Nick….he'd travel 3 hours to see me and I'd be asleep most of the time! So then he'd go home to get some kip and go to work again the next day….and then he'd do it again! I was too zonked at the time to really get how much he was there for me but in retrospect I love him so much for it all!
Feel free to email me if you want….with me not being on fb at the moment, and only popping in and out of this site, I miss so much, but I'm always there if you need it!
Send my best to Frank too….it's an upward journey now and that has to be good 🙂
Glad he enjoyed the rugby….someone had to!
Debs xx
Haha David,
I'm catching up on the site a bit late but this made me smile….and I needed that so thank you 🙂
Debs
Hi Dai
I'm going through the same feelings at the moment although I'm being far less careful than you, presuming that I'll be ok :-/ and hoping for the best!
I'm on maintenance at the moment and after nearly 18 months, my neutrophils dropped to 0.56!! They managed to get me up to 0.8 by taking me off revlimid for 2 weeks and giving me 5 days of GCSF, but then have put me back on it. I now have a horrid cough and sore throat and no energy at all. But I don't know, and won't until the 2nd, whether my levels have dropped back down or are the same. I'll only find out if I get a raging temperature and go in to our local hospital for tests.
The problem for me is that with the kids I just can't get away from bugs etc. At 6 and 8, my oldest is now worried about me and so I try to keep life normal by doing the school run etc….but that isn't helped when my so called friends send sick children into school pretending they haven't been sick because they don't want to miss a mufti day! And they know I'm neutropenic! arrggh! Who needs enemies hey?! I don't think they realise how serious it could be if I caught the wrong thing.
It sounds like you are doing all you can be doing. It is so hard staying away from kiddies, especially when they don't understand and just want to be with you.
Keep it up if you can 🙂
Debs
Just bumping this one up so that new Under 50's (or thereabouts!) can get access to the Under 50's site – one bonus of the site is that you can rant and rave if you need to without worrying that the people you are ranting and raving about might read your comments – it is a private site so even those innermost feelings that you don't want your families to read you speaking about, can be talked about with confidence on the site. x
Hi Megan and Phil
I've just read this post for the first time and wanted to say Welcome Home Phil. It made me cry reading the post, just because it brought back memories of the journey that Nick and I went through 18 months ago. I remember so well, those first steps outside of the hospital room and what a HUGE achievement it was 🙂
As people have said, make sure that Phil takes it easy and listens to his body….if it feels tired, he should rest. Ignore at your peril! I did and ended up wiped out for 3 months! But if you listen, each day he will get that bit better. The other tip I would give him, is to remember how far he has come from his neutrophils being 0. I started by worrying about what I couldn't do….and got very fed up! But as soon as I started to think about it in terms of how much better I was, I coped MUCH better.
Good luck with the recovery 🙂
Debs x
