[shaun3Participant]

Hi Jordan, sorry to hear about your diagnosis. Mine was caught when it had developed into MM but the roller coaster of emotions was similar. That was 8 ½ years ago now and I was 53 at the time. I had, still have, a very busy job and I was concerned about treatment alongside work. But I have to say that with exception of 2 periods when I had stem cell transplants, I’ve continued to work throughout. Like you I can do my job from almost anywhere. I’ve often found it tough as fatigue is a symptom but working, for me, remains important and doable. Wishing you all the best, Shaun

[shaun3Participant]

Ahh and I forgot to say that yoga and ta’i chi have really helped me over the years too 😊

[shaun3Participant]

Glad it wasn’t too bad. The sleepless nights were the worst bit for me, that and I was like a Duracell bunny at work 🤣, way too much energy. I was on chemo 8 days after diagnosis, back then it was VTD but I believe standard treatment includes Daratumamab now as well. It wasn’t available 8 years ago and I’ve just started it now, it’s working really well actually. I didn’t need the dental examination but I think that’s linked to the Zometa, I might be wrong. Hope it goes well.

[shaun3Participant]

Hi Rachel, how did you find the Dexamethasone? I must admit I never enjoy it but it does work. I’ve not had morphine for back pain but I hope it worked? I’m sure your consultant will be recommending other treatment with the dex, there are some standard treatments but they often depend upon the level of your lightchains and paraproteins etc. Are you seeing a myeloma specialist, I found that helped. Wishing you all the best, Shaun

[shaun3Participant]

Hi Rachel, I’m sorry to hear that, Im about 8 ½ years ahead if you having been diagnosed age 53 in 2015. I had a bad back and its turns out I had two crumbling vertebrae. My back is fine now and I’m MRD negative too. After lots of scans i was referred to the royal national orthopaedic hospital at Stanmore. At one point they suggested a brace but thankfully they decided to leave it and actually once the MM was under control the vertebrae grew back, amazing really. I had Zometa and also Adcal for 8 years. Wishing you all the very best on your journey. There is a lot to be optimistic about. Shaun

[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 3 years, 4 months 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 3 years, 11 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

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