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
Hi Sylvia,
Sorry to hear tht you’re having difficulty understanding our blood test results. I was diagnosed a year ago and whilst I am lucky to have 2 brilliant consultants I’m the sort of person tht wants to understand as much s possible too. I think its important to challenge the doctors too as there isn’t a cure and no single agreed way of treating Myeloma. I found this really useful and hope you will too:
https://onlinelibrary.wiley.com/doi/10.1002/ajh.25117
Take care and good luck!
Shaun
Hi Cassidy,
sorry to hear that allo won’t be possible for you now, especially after making a decision to go for it. I know how difficult that decision can be to square. I went through about 6 months of indecision mostly fuelled by the Treatment Related Mortality figures (15-20%) and the strongly opposing view from the US that ASCT followed by maintenance is now the right course of action.
My consultant is a transplanter and has been brilliant. Yes, he’s put the scare stories out there and we discuss the risks every time I see him (about every 6-8 weeks). But my mind was made up a few visits ago when we were discussing TRM when we told me his rate is currently 3%. We explored this a little and it turns out that he achieves this through careful patient selection. So my ego was sold. Only trouble now, of course, is that I recognise he could have been deploying basic psychology on me – making the case for an elite club which, as it happens, he’s willing to offer me a place in. I recognise I can be very cynical. And I’m still sold on allo so hoping to stay fit and healthy to get there. I’m due ASCT in Apr/May so long as IRD gets my levels down.
I couldn’t agree more that there are lots of treatment options open if allo isn’t an option. In fact, the Harley St doctor that I took the second opinion from told me that he would only recommend ASCT followed by maintenance. His point being that maintenance will keep me alive long enough for a cure to be found which as a course of action is much less risky than allo. He clearly has a point and its the same one that most of the big 8 in America subscribe to. Allo is definitely out of favour right now unless you’re high risk or young (I’m neither).
Anyway, good luck with your journey. Sending positive vibes your way and especially to your husband as he deals with the steroids too 🙂 You’ve got to laugh haven’t you.
Shaun
Hi Brendan,
Like everyone else, I’m really sorry to hear of your diagnosis. I’m about a year ahead of you and in my early 50s too. I think many of us have a difficult time at diagnosis as it’s still quite a rare cancer and the NHS is I suppose understandably on the look out for the higher volume problems. Sorry to hear too tht your father had it though. I suppose as you say tht meant you had more awareness.
I don’t have light chain or high risk myeloma but I’ve done a lot of reading just like everyone else. My consultants have been brilliant but I suspect I’m not the easiest patient as I challenge them constantly. I think this is essential as there’s no cure and different consultants have different views on treatment. Yes the NHS NICE guidelines govern treatment but when you look wider, especially to America where the top myeloma consultants tend to operate, then it’s clear tht one size does not fit all. I suppose that’s obvious given the individual nature of MM. So I get rather grumpy when the NHS NICE guidelines try to apply one size to all.
I found this article really helpful:
https://onlinelibrary.wiley.com/doi/10.1002/ajh.25117
It gives enough information for an uninformed amateur like me to understand and use the information I get from my consultants to think about my situation. You’ll be able to identify the ‘high risk’ markers and also consider the treatment options.
But whilst I’m not high risk I am currently on a path towards allogeneic stem cell. I wouldn’t recommend treatment to anyone, but I would just say tht different consultants have different views about treatment. But I think it’s recognised by most tht allogeneic stem cell should only really be considered for high risk.
The last point is to make sure your consultant is a myeloma specialist or at least tht you have access to one. I took a second opinion at one point from a recognised MM specialist to make sure th8ngs were going in the right direction.
Anyway, hope all tht helps. Sending positive thoughts your way.
Stay strong buddy
Shaun
#myelomawarrior
Hi Cat,
Sorry to learn of your diagnosis, I count myself as a young diagnosis (I was 52 and now 53) although I accept youth is a state of mind. I suppose anyone diagnosed under the average (65) is going to feel short changed. Feeling short changed is probably a fair reaction to a myeloma diagnosis at any age come to think about it.
My treatment so far has been fairly standard; VCD followed by IRD and then onto ASCT in Apr/May 19. I’m also hoping to have allogeneic SCT straight after. I know this is seen as a risk and out of favour especially by the majority of US based experts. But it represents the only chance of a cure (difficult word in myeloma) and I’m willing to take the risk.
Anyay, I wanted to say tht myeloma is a very individual cancer and our reaction to it is just as diverse. I’m lucky to have a large family, rewarding career and lots of interests – in other words life is good. And whilst it hit me hard at the start, life continues to be good. I’m only a year in but I’ve kept working and my life hasn’t changed massively so far. I suppose I predicate things (people) more but I certainly plan for the future. And I think about the future too. I’m determined to have one!
Sending huge amounts of support your way and hope your journey is long and successful.
Shaun
#myelomawarriors
Morning Aimee,
I’m sure tht your emotions and concerns are all very normal right now. I cried like a baby the first week after diagnosis but tht’s just part of the grief process, it passes and eventually you come to accept the situation and move forwards.
I also think your worry tht your mum will be more concerned about her children than herself is probably right too. I certainly am more concerned about leaving my family than I am about what will happen to me. But I wouldn’t look on it as a negative. My desire to continue living a happy life with my family is very strong and it drives me to never let this disease beat me. So the important thing is to help your mum channel tht emotion into a positive.
Sorry to sound all paternal here by the way. Sorry too tht your mum has been in pain for a while but the good news is that you now know why. And there are so many options available now to treat myeloma so you can now work with your mum’s consultants to regain her quality of life and long term treatment.
Stay strong but let the natural emotions flow.
Shaun
