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
Hi Aimee,
I’m so sorry to hear of your Mum’s diagnosis. It must be a worrying time for your family. Not sure this will help but I do hope so. I too was diagnosed with Myeloma almost a year ago now aged 52. We have a large family (5 children and 5 grandchildren) so I might know something of the uncertainty you currently feel.
I’d start by saying tht probably like your mum, I didn’t know anything about myeloma when I was fist diagnosed and the best piece of advice I was given was to do my research through the myeloma uk and Macmillan websites. There’s a lot of rubbish out there about cancer so it’s important to get your information from a good source. As you learn more about myeloma you’ll soon learn that whilst there is currently no cure, there a many treatment options available which are proving more and more effective. If diagnosed early and treated by a myeloma specialist then your Mum’s chances of living with myeloma for a long time are better now than they’ve ever been. In fact, the are many specialists in the field that believe myeloma has already become a chronic condition rather than a terminal one.
But everybody’s myeloma journey is very individual. So far I’ve undergone induction treatment using two different combinations of chemo and I’m due for a stem cell transplant in the next few months. Tht should hopefully give me a longer period of remission (1-4 years) before it comes back and we need to deal with it again. During my treatment so far I’ve managed to continue living my life pretty much as normal. The chemo has affected me, made me tired at times and gave me swollen ankles, but nothing tht I can’t handle. I’ve worked throughout and we’ve been on a couple of holidays this year.
So I’m almost a year ahead of your Mum in my life as a Myeloma warrior and so far life’s been pretty much as usual. Tht might sound strange right now but once you get over the shock and natural reactions then things return to normal – well they have for me. Actually there are even some benefits to facing your own mortality a little earlier than expected. It’s amazing how I appreciate things tht I never gave a second thought to before.
Anyway, good luck to you and your Mum. Send8ng all positive thoughts your way and huge buckets of courage for your journey together.
Shaun
Hi Pb42,
So sorry to hear of your diagnosis, Myeloma is a little known cancer and there’s an awful lot to get your head around at the start. I only have to deal with myeloma so can’t help with any advice on dealing with another cancer at the same time. What I can say is tht I was diagnosed in Mar 18 and have been on chemo induction treatment since. I’m due for stem cell transplant in the next few months. I found tht initially I read everything I could find about Myeloma and a lot of it wasn’t very helpful – or even true. So overtime I’ve found tht the Myeloma UK and MacMillan websites are the best source of information. I would also say tht as you get your head around myeloma you’ll realise tht there have been huge leaps forwards in treatment which mean tht there are lots of options open to manage the disease. It’s important though to find a consultant tht is used to dealing with Myeloma. I’m very optimistic about the future, I’ve Continued to work throughout and I intend to be around long enough for myeloma to become a chronic disease.
Finally, I just want to send positive vibes and best wishes your way.
Shaun
Hi Paul,
hope you’re well? Just a quick message to see how you’re getting on with the diagnosis? I really hope you’ve got the blood results back by now so you can at least understand what you’re dealing with.
Best
Shaun
Hi Richie,
sorry to read about your diagnosis and at an early age too. I was also diagnosed in March this year but I’m quite a bit older – 52. I was in the Army for 26 years so have always kept fit and healthy and have done so this last 9 years since leaving. My diagnosis was quite similar to yours; I was getting back pain (after a Christmas party bumper car ride) and I also had pain in my hip when walking (it stopped me running too), I then had a cold that wouldn’t shift and after a number of visits to the GP they sent bloods away and the hospital brilliantly found Myeloma.
I’ve got 2 compressed vertebra so I was told no yoga for 3 months, thankfully that’s ended now, but I’ve been on the turbo trainer everyday with my road bike and also I’m starting to do weights and yoga again now. I’ve also cut out sugar, alcohol, caffeine and meat from my diet. So I’m feeling pretty good as it happens.
Since March I’ve been on VTD to reduce the Myeloma. My paraproteins were about the same as yours at the start and we’re now down to 5 although that stalled a bit a couple of months ago. At that point they put me on Cyclophosphamide too. No significant side effects which is a bonus as well.
I’d be interested to hear what the plan is for you? Is your consultant recommending stem cell next and if so which – auto and/or allo? That feels like the next big decision point.
Anyway, welcome to the site. Really impressed with your approach to this and lots to learn for us all from it. Sending positive vibes your way.
Shaun
Morning Paul,
night time can be really worrying can’t it, especially when you lie awake thinking. I really feel for you right now because you don’t actually know what’s wrong with you. That must be really worrying and I suppose you’ll not get any peace until they confirm a diagnosis. Not easy to deal with but let’s hope that diagnosis comes soon and then you can start to deal with it and find answers to your questions.
All I can say is that I didn’t suspect Myeloma from the symptoms I had, mainly because I didn’t know Myeloma existed. In fact, they did a chest x-ray a few weeks before and I was told there were no signs of cancer. But I now understand why. The point is that I wasn’t expecting it but ended up with it, whereas you think it is Myeloma and I really hope you’re wrong.
I took 2 weeks off work when I was first diagnosed but since then have been working full time whilst on chemo. I work from home a lot which helps but I could go in to work as usual if I needed to. Cancer is a disability and you are protected by law.
The chemo takes a bit of getting used to but apart from feeling tired at the weekend, I haven’t had any significant side effects. I’m due to go in for stem cell at the end of October too which I’m not looking forward to but I know quite a lot of people that have had it and are now fit and healthy. And importantly in remission.
As for the survival rates, well you know what they say about statistics! As your GP said, the average age of diagnosis is 65 so many of the rates apply to people much older so living 5-10 years is very different to someone in their 40s. My consultant talks about 10 years with current drugs available but there really are some exciting new treatments being trialled right now. So the future is nowhere near as bleak as it was 2-5 years ago. You are a statistic of 1.
I found it really helped to talk to my wife about things so we could work it all through together. But we’re all different of course. Once you get the blood results back hopefully it will put your mind at rest, one way or the other. Until then, I hope you can find some peace.
Take care
Shaun
Hi again Paul,
I think your experience with the GP is quite common. I first went to see mine about 18 months before diagnosis complaining of rib pains especially when driving. I had quite a sporty car with hugging seats that really hurt. Understandably the GP didn’t pick up on what it was and I sold the car. I then went to a party before Christmas last year and had a ride on some bumper cars. The next day my back was in agony. It turned out I had compressed two vertebrae but it took a couple of months before I realised it was due to Myeloma. I went to see a chiropractor a few times and eventually went to see the GP too. In fact, I went to see the GP three times and eventually he sent off a blood test. Thankfully the haematologist at the local hospital identified from the blood that I had Myeloma (the standard laboratory investigation is serum protein electrophoresis and serum‑free light‑chain assay to confirm the presence of a paraprotein indicating possible myeloma or MGUS). The point I suppose is that it’s really rare and not commonly known at all amongst GPs. So not dissimilar to your symptoms but again it could be something completely different. The good news is that you know something is wrong with you so keep pushing them until they can firm up the diagnosis – whatever it is. It really might not be myeloma.
At least you’ve now got a blood test going through and that will show some form of abnormality if it exists and from there they should be able to track down where to look next. There is no simple way to diagnose myeloma and the more I read the more I realise that it affects everyone differently. That’s partly why its so difficult to treat. But if it is Myeloma it really isn’t as bad as it sounds – easy for me to say 6 months post diagnosis I accept. I have a really rewarding job that I love and don’t intend giving up, my wife and I are going away on holiday in a week’s time and I still exercise twice a day. Of course, I’d rather not have myeloma but it’s not going to define me. In fact, there are a number of positives that have come from it.
I don’t envy you not knowing what your illness is but you’ve done all you can by persisting with your GP to make sure they take things further. You’re obviously worried so just keep going until you get a diagnosis, no matter what it is.
Until then, try to stay positive buddy
Shaun
Hi Paul,
so sorry to hear that you’re not well and I hope that the diagnosis is confirmed to be something that can be dealt with easily. The blood test, whilst not completely conclusive, will certainly be a good indicator. So much of what you’ve written chimes with me. I’m 52, happily married with a large family. I was diagnosed with Myeloma in March having suffered a bad back, aching ribs and a cold I couldn’t shift – and I had been feeling really tired for months. But its really important to say that those are only similarities and by no means a diagnosis. Once I was diagnosed I felt much better weirdly, after the first week or so, as I knew what I had and I could focus on beating it. Although I’m only about 6 months into treatment I’m really positive as treatment is so much more advanced now and getting better every month. Already its being talked about as a chronic illness and a cure is clearly just around the corner.
The NHS have been brilliant and although Myeloma is a lesser known cancer, I too hadn’t heard of it, their treatment options are brilliant. It will be explained to you if you have indeed got myeloma but I can say that my bone pain stopped pretty soon after I started treatment. That’s mostly because they start you on induction chemo which fights the myeloma and also because I’m on a course of bone protecting/strengthening drugs and tablets.
But I think the best thing for now is to wait for the Doctors to diagnose exactly what you’ve got and then ask all your questions. The other top tip I learned too late, and this applies to any illness, is not to google it. You’ve done the right thing by coming to this website and forum but there’s a load of rubbish out there which could worry anyone. Happy to talk more once you know what you’ve got though if it helps?
Sending huge support your way my friend no matter what the outcome is.
Shaun
Hi Paul,
really sorry to read about the diagnosis. The early days are difficult but my experience is that the NHS have been brilliant. This sounds quite similar to me actually. I was told by my GP on 20 March this year that a blood test had picked up that i have Myeloma. I then went 2 days later to see the Consultant Haematologist who ran through some more tests to confirm the diagnosis. They have 4 critters and I seem to remember that they need 2 to confirm the diagnosis. And a biopsy is the final confirmation as that’s really the only way they can actually see if the Myeloma is present.
There’s a good article on the NHS choices website about diagnosis too: https://www.nhs.uk/conditions/multiple-myeloma/diagnosis/
Treatment once confirmed is fairly standard and effective too.
All the best
Shaun
