Hello, I’ve never written anything online before but have read the myeloma messages and thought there might be some tips for me. I was diagnosed in 2009 and had a SCT in 2010. I’m 76. I was then in remission for eight years. I didn’t realise how lucky I was. I relapsed last year, in February, and have had varying doses of Xamobid, Lenolidamide and Dex ever since. It’s been such a struggle but I’ve managed to lead some sort of life until two cycles ago they upped the Lenolidamide to 10 msg and the Dex to 6 - which I realise reading your messages may not be that high - but I’ve just been flattened by it. Can’t drive anymore and I feel I lead the life of an invalid. Lockdown hasn’t made much difference because I’ve got no energy to do anything anyway. Point of all this is that I try to explain this to my consultant, who’s looked after me throughout, and really I get nowhere. I suppose from a clinical point of view this is what it has to be but many times I just feel I can’t do it anymore. I think it would help me psychologically if he seemed to understand - but maybe I’m just asking too much. I’m heading, in theory for another SCT so I know the paraprotein has to go as low as possible but really sometimes I just feel it’s all too much. I have to say that my care through lockdown has been excellent in terms of clinical need. Of course all the specialist nurses are busy elsewhere so that channel has gone. Thank you in advance for taking the trouble to read this.
Hi Wendy590 and a very warm welcome to the online community
I'm very sorry to hear that you've recently relapsed after being in remission for 8 years.
I can see that you've found and joined the myeloma group and I'm sure if you post this message in that group you'll find plenty of people happy to share their experiences with you.
If you'd like to do that then clicking on the link I've created will take you straight there. You can then copy and paste your post from here after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
There is no link so I can’t take this further.
Hi Wendy590. If you click on the highlighted link by latchbrook above, it will take you to the Myeloma group if that is what you mean. Best wishes.
I'm sorry that you're having difficulty finding the link I created and I'm hoping you've found it now after my friend rily popped on yesterday evening. If you haven't found it yet, it's the words 'myeloma group' in green.
Thanks - I’ve got the link now. No luck with the copy and paste but I’ll enlist some help on that one. Thank you.
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