[shaun3Participant]

Of course, my email address is shaunstaines@me.com it might be easier to switch to email?

[shaun3Participant]

Hi Emmy,

I was diagnosed with MM aged 53 which was 5 years ago. I’ve since had two stem cell transplants and whilst I achieved complete remission for 4 ½ years I’ve recently relapsed. The second transplant was from a donor which is not standard NHS treatment. Very happy to discuss my decision making process if helpful?

Shaun

[shaun3Participant]

My email is XXXXX

• This reply was modified 1 year ago by  kh0305. Reason: Edited to remove personal details. Please share via the messenger function for privacy

[shaun3Participant]

Hello,

I was a bit older than you (52) when I was diagnosed but your reaction was similar to mine. I have a big family and the diagnosis was not what I was expecting at all. So I cried for a week but got over that and have been very positive since. There are lots of treatments available now. And here I am 5 years later and I’ve been in stringent complete response for the last 3 ½ years. If it would help to talk then happy to do so.

Shaun

[shaun3Participant]

Hey Mark,

sorry to read your diagnosis. I was a very active and happy 53 year old when I was diagnosed. Two stem cells transplants and 4 years later, I’m in complete remission and once again very active and happy.

More than happy to talk by email or text if helpful;

You’ll get through it just like the rest of us.

Stay strong mate

Shaun

• This reply was modified 1 year, 8 months ago by  courtneymyelomauk. Reason: Personal details on forum

[shaun3Participant]

Hi Miley,

sorry to learn of your Mum’s diagnosis. I was diagnosed about 3 years ago aged 52. Similar situation; bad back and a couple of collapsed vertebrae. The first few months after diagnosis are tough but the outlook is not as bad as it used to be. In the last 3 years I’ve had two stem cell transplants and I’ve been in complete remission for almost 20 months now. I’m working really hard, enjoy my life and the outlook is positive. So my advice would be; make sure your mum finds a good Myeloma consultant and only read information from a trusted source like MyelomaUK. Try not to worry too much, there are many treatment options open for your Mum.

Sending positive vibes in both your directions

Shaun

[shaun3Participant]

Hi Dave,

sorry to hear of your diagnosis. The early days aren’t easy. I was diagnosed aged 52 in 2018 – so a little bit older than you. Since then I’ve had two stem cell transplants (auto and allo) and I’ve been in complete remission for almost 2 years now. Sorry to also be positive but the outlook is so much better than it used to be. I fully intend to live for a very long time yet. I had about 6 months off work in total but have managed to juggle work, family and life throughout. Like you, I have an amazing wife which has been fundamental to my positive outlook. If its advice you’re after, well; find yourself a consultant that’s a Myeloma specialist is my top tip, don’t read the rubbish that’s on the internet (stick to MyelomaUK, Cancer Research etc) and stay as fit as you can throughout (yoga, cycle, long walks etc).

Good luck buddy

Shaun

[shaun3Participant]

Hi Dave,

sorry to hear of your diagnosis. The early days aren’t easy. I was diagnosed aged 52 in 2018 – so a little bit older than you. Since then I’ve had two stem cell transplants (auto and allo) and I’ve been in complete remission for almost 2 years now. Sorry to also be positive but the outlook is so much better than it used to be. I fully intend to live for a very long time yet. I had about 6 months off work in total but have managed to juggle work, family and life throughout. Like you, I have an amazing wife which has been fundamental to my positive outlook. If its advice you’re after, well; find yourself a constant that’s a Myeloma specialist is my top tip, don’t read the rubbish that’s on the internet (stick to MyelomaUK, Cancer Research etc) and stay as fit as you can throughout (yoga, cycle, long walks etc).

Good luck buddy

Shaun

[shaun3Participant]

Hi Will,

I’m sorry to read of your diagnosis. I’m 55 and was diagnosed 3 years ago, my disease was in my back and I have two compressed vertebrae. I remember VTD well and I’ve now been through two stem cells transplants and I’m currently in remission. I’d be very happy to talk more about things if it would help. My email address is shaunstaines@me.com if you’d like to get in touch.

If not then of course that’s fine. Just wanted to say tht there are lots of reasons to be positive and loads of treatment options available. The first few weeks and months can be pretty dark, but there are reasons to remain optimistic. Make sure you find a Myeloma specialist, don’t believe everything you read and make sure you take your information from trusted sources (like MyelomaUK). Above all; keep fit, eat healthy and stay positive.

Sending positive vibes your way buddy.

Shaun

[shaun3Participant]

Hi JenJam,

like so many of the other wonderful people tht have posted here, I was diagnosed with MM too. Mine was almost 3 years ago now aged 53. So i’m a bit older than you. I think we all know tht awful feeling especially in the early days as you start to adjust. I cried like a baby but then life went back to normal quite quickly. I continued to work and here I am 3 years later in remission (MRD-). Human nature is amazingly resilient and you will find positives in all this.

The advice above is spot on. I chose to go down the allogeneic stem cell route. I was only able to do tht because I was (otherwise) fit and healthy. Exercise and good eating/living are things I’ve always been fortunate to do. I can’t run anymore, due to two compressed vertebra, but I exercise everyday (yoga and road bike now).

The next thing tht has been really beneficial was actually a bit of a lottery. I was fortunate to live near to a hospital with a Myeloma specialist. It’s so important to get advice from a consultant tht specialises in Myeloma. Even within the myeloma community there are conflicting views about how best to treat it. So get second opinions and use the MyelomaUK team and website to form your own views.

Finally, I would advise you to challenge your medical team. Read up on things, find academic articles about Myeloma and work with your medical team to find the right treatment options for you. In the US they have a number of key Myeloma experts tht are very good at tweeting their views and the latest new initiative for managing Myeloma. We also have some World renown experts in this country too. Find out who they are and then seek their opinions too. I love Mulberry’s statistic above tht 14% of sufferers in the US have already lived 20 years or more. You might find that’s because they’re much more likely to have an allo in the US than elsewhere. But I recognise I might be biased!

There are so many treatment options out there now tht many experts are now saying tht Myeloma is a chronic disease. There might be no official cure but there are many more options available now than there were just 5-10 years ago.

Sending all positive vibes your way

Shaun

[shaun3Participant]

Hi Julie,

no problem. My diagnosis was Multiple Myeloma. I wasn’t diagnosed with MGUS or smouldering myeloma. But the assessment was tht it was stage 1 at diagnosis which clearly was a good thing. And at tht time my paraproteins were 27.1g/l. But I do think its important to recognise tht paraproteins are only one aspect of a myeloma diagnosis. This might help, but I would also strongly recommend you get medical advice from a Myeloma specialist:

https://onlinelibrary.wiley.com/doi/10.1002/ajh.25117

Good luck

Shaun

[shaun3Participant]

Hi Julie,

sorry to hear your husband hasn’t been well. I think early diagnosis, not matter what the illness, is always preferable. My paraprotein level was 27.1 when I was diagnosed almost 3 years ago now (age 52). Luckily I was diagnosed early. But there are a number of factors needed to confirm a diagnosis of myeloma and paraprotein levels are just one. Your haematologist should be well equipped to look out for MM. But always worth pushing and asking for a second opinion – in my view anyway.

Anyway, good luck to you both and Merry Christmas

Shaun

[shaun3Participant]

Hi Dave,

sorry to hear tht you’ve joined the club – but welcome anyway. Afraid I’ve not had Daratumumab so can’t offer any advice on tht. But I have had an auto and, whilst it wasn’t great, I was MRD negative afterwards and have been for 18 months now. So the short term pain was worth it in my case. The stem cell wasn’t great for a couple of weeks but its amazing how quickly your body recovers. And the mind too. I know I’ve got MM but it really doesn’t affect my life right now and Im eternally optimistic; indeed, I’m convinced I’m going to live to a ripe old age. So stay strong buddy, you’ll get through this and there is light on the other side.

Sending positive vibes your way.

Take care

Shaun

[shaun3Participant]

Hi everyone,

great to feel tht I’m not the only one going through this, although obviously wish for your sakes tht I was! 53 seems to be a young but common age for diagnosis. Tht was 2 years ago for me and much of what’s been written above resonates with me. I cried like a baby for a week but have been surprisingly positive since then. Human nature is a funny thing isn’t it. Since Mar 18 I’ve had two stem cells transplants (auto and allo) and I’m currently MRD- (no sign of disease). No idea how long tht will last but I’m really optimistic about the future. My initial reaction was to take early retirement but 2 years later I’m getting grumpy again if I think others are getting promoted at work over me. I’ve been told to live in the moment, stay positive and stay strong – at the end of the day none of us really have any option. I have a few dark days but i recognise them ow and just do some more yoga or cycling which I find helps me get through them quicker. Sending positive vibes your way nbc – let’s kick its butt together.

Shaun

[shaun3Participant]

Hi Mark,

I’m sorry to hear tht your MM is now active. I was diagnosed two years ago at 53 and since then I’ve had two stem cell transplants. I’m one year post allogeneic stem cell transplant and currently I’m MRD negative (no sign of disease). I’m not high risk but my treatment (allogeneic stem cell transplant) is an option for high risk. So the treatment does work. Staying fit, I cycle too, and positive is really important. So stay strong buddy – we’ll get through this. Very happy to talk more by email if tht would help.

Shaun

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