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
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
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
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
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
Hi,
I’m sorry to hear about your diagnosis. I hope you’ve managed to find more information by now to help. I just wanted to say tht I was a little bit older than you when I was diagnosed with MM (52) and now 2 ½ years later I’m 1 year post Allogeneic stem cell transplant and in complete remission (MRD-). I had/have private medical insurance and in the early days I had a number of second opinions before deciding which treatment route to follow. But the most important thing I’ve found is to ensure tht your consultant is a Myeloma expert. It’s a very niche area of medicine. Actually I have been with the same NHS consultant throughout for this very reason.
Good luck
Hi danjwoz,
sorry to hear about your diagnosis especially at a young age. I’m twice your age and was diagnosed 2 ½ years ago at 52. Which can be considered a young(ish) diagnosis for MM as the average age at diagnosis is early 60s. So I probably can’t help much but I have had 2 transplants in the last year,
The first thing to recognise is tht treatment for MM is developing every year. The survival rates are difficult to unpack as the average age of those surveyed tends to be quite old – which gives a distorted view especially if you’re younger than the average. But without doubt treatment for MM is evolving rapidly and survival rates are significantly higher, and growing each year.
It’s important to make sure your consultant is an MM specialist. MM is quite a niche area so its worth contacting MyelomaUK who can put you in contact with specialists in this area.
And then onto stem cell transplants. Officially there isn’t a cure for MM. The standard treatment, and there is no normal in MM, is induction chemo (to bring it under control) followed by two autologous stem cell transplants – so they take some of your own stems cells out, give you really strong chemo to kill the cancer and then put your stems cells back again. If they do tht twice then the remission tends to be longer. But it will come back.
I had one autologous stem cell transplant followed by an allogeneic stem cell transplant. This is where they use a donor’s stem cells with the objective of creating a new immune system in your body tht identifies and kills the MM. I had tht 11 months ago and I’m still in remission. But its a waiting game, they test you every 6 months and hope it doesn’t come back. So you’re never officially ‘cured’ but people have remained in remission all their lives after an allo.
There’s loads of material available to read up on all this, but MyelomaUk is a really good source of reliable information and above all, talk it through with a myeloma specialist. The main thing to understand is tht MM is now a chronic disease – you will most probably die with it rather than because of it.
Hope tht helps, wishing you the very best of luck!
Shaun
Hi Clare,
I was sorry to read of your husband’s diagnosis earlier today. i’ve been working all day but it kept popping back into my mind. I’m almost 55 and was diagnosed with MM just over 2 years ago. Like many with MM, I had back pain and a lingering cold tht wouldn’t budge. I was lucky and was diagnosed quite quickly and started on VTD within a few days. The chemo wasn’t much fun, and i had a few more combinations but eventually it came under control and I managed to work throughout this initial period.
I should add tht like your husband I’ve always been fit and healthy – I run/cycle a lot and do yoga everyday too. Not quite rock climbing I accept. I’ve since had an Auto and an Allo ab=nd am currently in remission (MRD-) these things will start to mean a lot to you as your husband progresses through things.
In the last 2 ½ years I’ve taken 6 months off work but have managed to continue to hold down a really demanding job and live my life to the full. I am lucky to have a wonderful marriage, 5 children and 7 grandchildren. My glass is not only half full but it positively brimeth over.
The point is, there’s loads of options available to deal with MM and a positive attitude is highly important – as is a good base of fitness to see you through.
Sending positive vibes in your husband’s direction by the bucket load
Shaun
Hi Claire,
I was a bit older than you, 52, when i was diagnosed in 2018. Paraproteins in your blood are a good indicator although to confirm Myeloma there’s an approved set of tests tht they must complete. There’s a really good Info pack for newly diagnosed patients on the Myeloma UK website tht tells you all about it. But as Kevin says, I really hope its something that is curable. I’ve now had two stem cells transplants, one of which was from a donor, and I’m currently in remission. Treatment for Myeloma has come on leaps and bounds in the last 5 years and i read something the other day tht reckons it’s now a chronic disease (you will die with it rather than from it) – so there really is lots to be positive about. I have a fulfilling job, large family, happy life and Myeloma doesn’t get in the way of any of it. Being positive is so important, good luck and keep smiling. Oh, and if it is myeloma make sure you’re treated by a Myeloma specialist.
Shaun
Hi Jo,
I’m so sorry to hear of your husband’s diagnosis. It takes some time to come to terms with – for all of you no doubt. I was diagnosed in Mar 18 aged 52 following a bad back plus a cold tht just wouldn’t go away. All very similar and common symptoms for MM. I had three lines of treatment before ASCT; VTD, IRD and Cyclophosphamide too. It took about a year for those treatments to get my paraproteins down to a level when I was able to undergo ASCT. ASCT was in May this year and I’m currently in Complete Remission about to undergo Allogeneic Stem Cell transplant this week.
I suffered a little with numb feet and hands (I’ve got a peripheral neuropathy in both my feet) but as time goes by the feeling comes back and affects me less. I worked throughout and can’t wait to get back to work again in a few months after recovering from Allo. I’ve remained very fit and active.
I’m no doctor but it seems like MM affects people in different ways and there’s no single way to treat it. I’ve read quite a lot and the accepted wisdom (from the USA mainly) is 4 rounds of VTD (or similar) followed by ASCT. But tht wasn’t my experience and I eventually achieved CR. There are new drugs coming online all the time so I’m sure they’ll find the right combination to bring your husband MM under control so tht he can undergo ASCT.
Wishing you both all the best Jo, stay positive and strong.
Shaun
Hi Dave, sounds like you’ve been in the wars recently but really well done for getting through. I suspect tht your ability to get to your current position should give you optimism if nothing else. And I’m convinced there’s lots of reasons to be optimistic about the future buddy.
I was diagnosed about 18 months ago having suffered, like a lot of us, with a bad back and bone pains. Long story short, I had two collapsed vertebra in my spine and I was diagnosed with myeloma stage 1. I was 52 and pretty fit with a large happy family and a really rewarding job. Since then I’ve been on a number of courses of induction treatment and had autologous stem cell treatment. In a month I’m going in for an Allogeneic transplant. I’m still pretty fit and still have tht same job tht I really enjoy. I intend to take a couple of months off for the stem cell and then return to work. My wife, family and friends have been utterly brilliant.
There are stacks of new drugs available and new ones being developed all the time. Myeloma is part of my life but it runs alongside me now and I do not intend to let it beat me. So stay strong buddy. I cried like a bay for the first few days but tht soon passed and life remains a brilliant and exciting journey. And yours will too.
Hey Adrian,
one of those rare moments in life when I can say ‘I know how you feel’ and not do so patronisingly. Same situation as I was diagnosed in Mar 18 age 52. Twelve months on and I sat in hospital recovering from autologous stem cell treatment. Induction treatment was fine, no huge Sid effects and I kept working too. Auto hasn’t been great but the outcome should be worthwhile. I’m going straight on to Allo in Sep. All of which I’m doing to grow and smelly with my wonderful wife and family.
Stay strong buddy, there are so many options out there now.
Shaun
Hi Claire,
sorry to hear that you’re undergoing tests which might detect Myeloma. Really hope they’re wrong. But just two thoughts spring to mind:
1. Waiting until mid-Apr for a haematology appointment feels like a long time to me. Early diagnosis and treatment is key so I’d be pushing for an earlier appointment.
2. There’s a really good booklet for newly diagnosed Myeloma patients which helped me:
https://www.myeloma.org.uk/documents/infopack-for-newly-diagnosed-patients/
Sending all positive vibes your way.
Shaun
Hi Chris,
I was thinking about your post when reading an email from the Myeloma Foundation this morning. Dr Drurie is a Scot who lives in the US and is one of the leading Myeloma specialists in the world. One of the big 8. Anyway he runs the foundation and they provide really good info and advice. He’s running a webinar next month on living well with Smoulering and MGUS. You might be interested:
https://www.myeloma.org/events/living-well-myeloma-mgus-smoldering-myeloma-newly-diagnosed
Good luck
Shaun
Hi Chris,
Sorry to hear tht you’re worried which of course is very natural. I’m a bit older than you, 53, and was diagnosed at stage 1. So I don’t really know a lot about Smouldering or MGUS. I do remember Straight after diagnosis, in Mar 18, googling everything but I soon learned tht the MyelomaUk was a great source of trusted advice. They’ve got an info sheet on Smouldering Myeloma which I hope helps:
https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-Smouldering-myeloma-Infosheet.pdf
Important of course to really understand what you’re dealing with so diagnosis is essential. It might no seem it now but there ar lots of treatment options and a whole load of reasons to be positive about the future – if it is Myeloma.
Sending positive vibes you way buddy.
Shaun
