HI there. I hope all went well with your biopsy etc. Just to give you a little more hope (I totally agree with everyone above!), I was diagnosed in 2009 at age 34. We had a 2 year old and a 4 year old and I was convinced I wouldn’t see them go to secondary school. Now they are 14 and 16, answer me back constantly 😂, and drive me round the bend.
I smouldered and have had two stem cell transplants (second one in Sept 20). I’m currently on darathumumab. The NHS is a wonderful place if you’re at the right hospital….if you aren’t, my one piece of advice is to move to one that you have faith and trust in.
Keep fit, and my only piece of advice is to find something that you can keep control of. For me, I got into fundraising for Myeloma UK and it has been my absolute lifeline.
Good luck and if you need to chat further, feel free to get in touch
Take care
Deb
HI there. I hope all went well with your biopsy etc. Just to give you a little more hope (I totally agree with everyone above!), I was diagnosed in 2009 at age 34. We had a 2 year old and a 4 year old and I was convinced I wouldn’t see them go to secondary school. Now they are 14 and 16, answer me back constantly 😂, and drive me round the bend.
I smouldered and have had two stem cell transplants (second one in Sept 20). I’m currently on darathumumab. The NHS is a wonderful place if you’re at the right hospital….if you aren’t, my one piece of advice is to move to one that you have faith and trust in.
Keep fit, and my only piece of advice is to find something that you can keep control of. For me, I got into fundraising for Myeloma UK and it has been my absolute lifeline.
Good luck and if you need to chat further, feel free to get in touch
Take care
Deb
Hi there. I’d try not to listen too heavily to the formal terminology – it can make things sound scarier than they are sometimes. I went from smouldering to MM and had 50% in my bones by the time I had my treatment. But it goes with treatment often and varies as to the impact that it has. Biopsies aren’t always done (I have moved to the Midlands and haven’t had a single biopsy in the past 6 years!) as they can be hit and miss anyway….i.e you hit one area and it’s 40% and another area and it might only be 10%.
RE the stages, that is something that I’ve NEVER been told where I am as myeloma tends to come / go/ confuse!
Revlimid is a great drug to be on though and hopefully that will help to not only bring his levels down, but also allow him to get back to a life more like what he had before all of this kicked off.
Try not to get too down (easy to say, not always easy to do!) and don’t forget about the infoline that Myeloma UK run – they can help answer lots of questions about what is normal, and they also have lots of info booklets that might ease your concerns.
Good luck
Deb x
Hi there.
I wouldn’t worry too much – often chemo is the induction for a transplant. I don’t know your situation but donor transplants are more common with aggressive myeloma (I think!)
Your best bet is to make sure you ask your consultant Next time you see him…or if it’s worrying you, call the hospital and speak to him/ myeloma nurse specialist? Don’t sit at home worrying as they may have a plan that they haven’t yet shared.
You could also talk to the info line?
Good luck.
Of course you can. Either here or I’m happy for you to email on gascoynedeb@Gmail.com.
Good luck.
Hi there. I found that with revlimid, that the side effects weren’t too bad. I did find my neutrophils dropped which meant that I got poorly a bit more but that was more when I had it as maintenance rather than when I had it with cyclophosphamide and dexamethasone – i didn’t really have many effects at all like that.
I know a lot of people suffer from the Dex. It can make people quite like Jekyll and Hyde characters so try not to take anything your husband says personally – he won’t mean it – unless he’s being nice of course!! It also can cause major issues sleeping But I find that if I take a couple of sleeping tablets on my Dex days and one the day after, that helps me no end!! Get him to talk to his consultant about it.
Really hope that all goes well for him and that the RCD regime works well for him.
Just ask if you have any questions 😊
By the way, whilst I’ve had a transplant, I was diagnosed back in 2009!! Relapsed last year and about to have second transplant but doing really well if that gives you hope??
Hi there. I found that with revlimid, that the side effects weren’t too bad. I did find my neutrophils dropped which meant that I got poorly a bit more but that was more when I had it as maintenance rather than when I had it with cyclophosphamide and dexamethasone – i didn’t really have many effects at all like that.
I know a lot of people suffer from the Dex. It can make people quite like Jekyll and Hyde characters so try not to take anything your husband says personally – he won’t mean it – unless he’s being nice of course!! It also can cause major issues sleeping But I find that if I take a couple of sleeping tablets on my Dex days and one the day after, that helps me no end!! Get him to talk to his consultant about it.
Really hope that all goes well for him and that the RCD regime works well for him.
Just ask if you have any questions 😊
By the way, whilst I’ve had a transplant, I was diagnosed back in 2009!! Relapsed last year and about to have second transplant but doing really well if that gives you hope??
Well done for sharing.
Hi there. I had my transplant back in2011 and like you afterwards felt really down despite everything being good.
I think it’s the hard thing with myeloma. We don’t know what the future holds and also sometimes it is just a huge anticlimax post transplant.
I ended up having a bit of counselling to help me get my head into the right place. I also went back to work and got back to fundraising for Myeloma UK – something that has helped me as it allows me to acknowledge the myeloma in a more positive way when I’m healthy.
Good luck.
Hi there stumbled on this tonight and just wanted to say that I was 34 at diagnosis back in 2009. Smouldered till 2010 and then treatment started and transplant.
I’ve only recently relapsed and am pleased we took the decision to change the way we approached life but didn’t give up on it. We’d have had no money left if we’d gone travelling for 2 years like my husband said!!
We were lucky that our kids were 2 and 4 at diagnosis. Well sort of lucky. We were lucky to not have to think about it too much as I thought 2 was enough. Maybe if you can freeze sperm it keeps that option open for you just in case. My husband wanted a 3rd but I told him it wasn’t fair in case I wasn’t alive to bring them up….now treatments are so much more advanced. If we had known maybe we’d have had 3 kids instead of a mental cockapoo!
I think you just have to do what makes you happy with your decisions. Don’t let others tell you as everyone is different.
I spend my time fundraising for Myeloma UK outside of my business which I set up a couple of years ago. I play netball and did play racketball till recently.
Good luck with it all and here on a message if you need any support (don’t often come on here although will try nownive reminded myself it’s here!)
Sounds great Adrian….every bit we can all do is really great.
Hope the SCT goes well for you – Take it easy afterwards, listen to your body and don’t overdo it! Fundraising can all wait 🙂
Deb x
Hi David. THat is not good news. Although Maureen is right that revlimid has been said to have a tiny chance of increasing the risk of secondary cancer, skin cancer being one of the ones that it is more likely to do this with. That said, I have always said that whilst there is a chance of that, I’ll take that chance given the benefits it offers. Sorry…serious comment on an otherwise pretty funny post!
Good luck and hope that they can give you treatment that easily gets you sorted 🙂
Deb x
Hi there.
No my pain pretty much disappeared eventually. I still get slightly 'spongy' feet from my maintenance therapy (revlimid surprisingly – not common to get PN from that!) but I don't take anything for it as it is manageable.
Hope your husband gets some relief soon – it really is horrid to be in pain 🙁
Thanks
Debs
Good luck Darren
As the others have said, at the beginning it is such a shock but in time you really do learn to work with myeloma in your life.
The people on this site are absolutely amazing. I don't come on so much these days as I am nearly 2.5 years in remission and find myself chocca with working 4 days a week, looking after my two kids and doing various other bits. I only say all of that to show you that life goes on no matter what, and you can go back to having a near normal life even if you do get a diagnosis of myeloma.
Good luck and I hope that all goes well for you.
Deb x
I think I was put on amotryptalin (pls excuse spelling!) to go with the gabapentin and oromorph!!
Eventually for me it died down – it just took a bit of time. Funnily I think revlamid kicks it off for me!
Good luck…I hated the foot pain as much as the rest of it all!
Debs
