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Hi
I hope its ok to post on here as i have yet to be diagnosed. I see my gp for a blood test later today. Im 48, male, scared, anxious, lost and overwhelmed.
Ive had bone pains in my back for a few years now. (One in the middle of my back for 2.5 years) Intermitent at first but now constant. The pains are on 3 vertebrae at c7/c6 and 1 other in the middle and 1 in the lower back. I just thought the were middle aged man back pains or maybe at worst a little bit of arthritis.
A month ago i started with a knee pain. This wasnt a normal knee pain as it also hurt when i wasnt moving the knee and hurts just as much at night. It also sends a pain up my thigh when i bend my knee and feels deep in my bone. I had an xray on the knee and it appears normal so its not arthritis.
2 weeks ago i started with a pain going down my right arm and into my fingers, this pain makes my arm ache when i use it, and i think its refered pain from my c7/c6 vertebrae . I also developed a pain in my right arm but just the top near the shoulder. This is very painful.
Yesterday i noticed 2 10p sized bruises on my arm. These bruises are perfectly round and purple. This has me freaked as i do not recall hurting my arm and these look completely different to bruises i normally get.
I would also say i have been struggling for energy for the past 9 months.
I literally didnt know this cancer even existed and came across it by chance and now im freaking out at all the symptoms i have.
I have a few questions:-
Is there anything else that could give me all these bone pains and cause bruising like this?
If it is Myeloma, is it more likely i will be late stage due to the multiple bone pains i have and length of time having them
Would a lesion caused by myeloma normally be seen on a normal xray of my knee. Im just wondering if its a lesion higher than the xray studied.
If it is Myeloma, is their a treatment that would take all the bone pains away? Im thinking radiotherapy or is that not used in myeloma?
Im so scared, if i have myeloma i am worrried i wont see my daughters grow up. I just worry that with the amount of bones involved i will be late stage and not have a chance to fight. The bruising is what has freaked me out. I know its a trait of blood cancers, but can anything else cause this?
Thanks in advance
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
Thanks for replying Shaun.
Wow so you had the back pains too.
Could i ask a question, how long had you been having the pains in your back before you were diagnosed?
I know for a fact i have been having the pain in the middle of my back for roughly 2.5 years or slightly less. The reason i remember is i had an older car with hard leather seats and remember i had the pains and it hurt slightly more than a soft seat. That was early summer 2016 as i got new one in august 2016. The other 2 pains were around 15 months ago at least.
Surely the middle spine bone would have collapsed or fractured by now after over 2 years of myeloma eating away at the marrow bone? I dont really know to be honest but looking at average mortality rates I would have thought the ones who died within 2 years would have not had any chemo or medication. Which then begs the question why i am not in absolute agony and showing signs of renal or liver failure.
The gp’s was a bit of a pain today. I told her all my pains, i told her i’d felt a bit tired and showed her the bruises on my arm. I then asked her to please send me to a haemetologist but she wouldnt until i had some blood tests by my gp’s clinic. She then went on to tell me its very very rare and usually affects older people. I told her 96 people in my age group (44-49) were diagnosed in 2015 but she just kept saying it wont be myeloma. I
Eventually she agreed to do fbc, calcium and some others as well as a bence jones urine sample. She said they couldnt do a spep as it wasnt on her choices at the clinic.
I said ok, let me be devils advocate, imagine i was one of the 96 who did have mm, not everyone of those 96 were anaemic or had raised calcium levels so how would she know if i had myeloma and didnt have those raised levels. She said her hands were tied and she would look at the results next week.
So there you have it, what could my gp see with no specific myeloma blood tests and how am i supposed to get to see a haematologist who can do the spep and other specific myeloma tests.
After i had the blood test i didnt realise by my blood didnt clot very well and left blood spots on my shirt. I am worried that this is another symptom.
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
The bruising and blood not clotting thing has suddenly hit me like a freight train while laid in bed unable to sleep. Its definitely my platelets causing this which means this is very likely myeloma. Ive checked nhs website and cant see anything else that gives chronic bone pain and affects bone narrow except myeloma. Looks like im one of the 96 who get myeloma this year in my age group.
Damn this bloody cancer!
Shaun, sorry to bother you again but what was your timeframe from first noticing the pains to being diagnosed? Mine is years!
Are you still able to work? Have they said if you will be able to have that sct eventually or just keep going with chemo? Is that the plan?
Im scared and feel emotional. I know this is treatable but its not curable and will cut my life by decades. I can see this being a beatable cancer in 20 or 30 years time but not soon enough for me. Sure they will keep finding different drugs to prelong by a few more months even a year but eventually it will get me.
The 5 and 10 year survival rate for my age group is still low and coupled with the fact ive had these bone pains for years it will probably mean i wont be one of the lucky ones. I will be lucky to get 5 years and thats if i am lucky enough to have sct and go into remission.
My family is so young and needs me, we dont have mortgage insurance so will still have to pay our mortgage even if i cant work. My parents have both passed so i cant get help from them. As my wife works early mornings i take the chilldren to school, Who will do this if im bedridden fron my bones breaking.
How will i tell my family. My wife knows i have bone pains but ive not mentioned i fear its myeloma and when we both find out it will destroy her.
My wife is 45, works full time, will have to look after the kids and be my carer. Thats too much to ask of her.
A worry is i dont tolerate chemo very well and cant carry on working. Work can then terminate me after long term sick and we wont be able to cope without my money..
Im too young to retire and if i did manage to get it, it would mean my wife will get a drastically cut widows pension when i eventually die. That pension has always been my safety net that if i were ever to die she would get my widows pension and be able to pay for the mortgage and bring the kids up with no money troubles. But if i get to my pension early i get a drastically cut pension which means my wife will too when i die.
My only hope is that i can manage to keep working while on chemo and eventually have an sct to give me some more years to keep working. I know i would be absent from work for around 4 months having the sct but would hopefully be able to go back to work afterwards for at least a few more years. If i could get to 55 i could actually take early retirement but 7 years is alot to ask really and more that i expect with the cancer killing my bones for all these years.
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 Shaun
Thanks so much for getting back to me. I cant tell you how thankful i am just hearing that someone else went through all this and came through the other side (of the initial diagnosis i mean) Its good if your doc is telling you 10 years. I take it you were early stage if he is saying that to you.
Wow you have been through the chemo cycles fairly quick if they are already talking about sct with you. Fantastic! Am i right in thinkng that usually after sct, the cancer is almost gone and you can almost be in remission with no chemo until it relapses. If so that is exactly what i hope for. (Other than me not having myeloma)
What is puzzling is i had a fbc blood test exactly a year ago and my readings were fine, playtlet count on the low side at 178 (150-450) but still in the range. Rbc was 4.94 bang in the middle of the range and wbc 4.30 which again is slightly low but still in the range and no cause for watching they said. I had been having the bone pains for quite a while by then so myeloma was present in my marrow. So why did it not show a year ago?
I guess the worry is that its now stage 3 rather than early stage. Ive checked the rest of my body and those two were the only bruises i have, they are turning brown now instead of purple so are mending. Still a disturbing find as the were the most purple bruise i’d ever seen and purely that colour no other at all.
I agree what you are saying, everyone is different and im sure the ones who die fairly quickly will be quite old or very ill in the first place. 2015 rates show 5 year survival in my age range at almost 80%. Its probably more now in 2018.
Im surprised the chest xray didnt pick up on your conpressed vertebrae. What did that feel like? An ache? Or is it more a pain when you move about.
My back pain is strange. It aches, but if im sat in my chair at work leaning forward on my desk to type, the pain is hardly there. In fact i can almost forget about it.
However, when i sit back its like its pressing on something because i get the ache back again. Its also worse at night when i lay on my back as my full weight is on it, but if i move to my side the pain almost disappears. So the pain is definitely dependent on weight i think.
What was your back pain like? How long did it last? Did it get better or worse with time? Was it worse laid down or stood up? Worse when you moved or bent your back?
I know you said the pain went after having the chemo drugs.
What chemo drugs are you on?
When did you lose your hair? ( this is the bit im dreading as i have always had a full head of hair and unlike women, men cant exactly wear a wig can we.
Sorry its a long message but once again thank you so much for taking the time to answer my many questions. You are a credit to the forum.
Paul
Hello Paul
I don’t know to much about the ins and outs of the disease and the only figure I ask about is my paraprotein level. I found it quite daunting at the beginning with the diagnosis, appointments and treatments but once everything settled down it felt a little easier. Like you I was diagnosed at 48 and has as been said there has been a lot of advances in treatment with more in the pipeline. I am now 60 and just short of 12 years since diagnosis. In that time I have had 2 relapses both about 5 years apart and have just finished my 3rd treatment and am on about 10 months of maintenance treatment. Each time I have achieved a full remission. I hope this helps a little.
Best Wishes
Kevin
Wow Kevin thats amazing!!
12 years and still counting!
So you’ve have 3 treatments, that is fantastic.
Its stories like yours that really helps this community.
Like you and Shaun state, advances are happening all the time, in fact it seems to me that the advancements to survival time are actually outdoing real time. Which is great news for patients especially ones like Shaun who are looking at 10 years in the future, who knows where we will be then.
Could i ask what stage you were and if you had bone pains?
Was the chemo hard to take? Which chemo did you have?
As you know from this thread i have alot of bone pains all over but especially in my spine. Im hoping im still early stage but ive had them for a very long time now so it may be wishful thinking. I also think my platelets are well down as i have recently had bruises and trouble with blood clotting.
I had a blood test last year and my bloods were fine so hopefully organs are still ok.
As i await a diagnosis i am scared stiff in case my bones are too badly affected to mend, my organs are too far gone to have chemo or that im too late a stage to have a sct.
This waiting bit is the worst part…..its like waiting for a death sentence.
Hello Paul,
Sorry I don’t know the stage but the diagnosis was. 1gG Kappa Myeloma with spinal lytic lesions. Will try and find some early letters and see if it says on there and let you know. As you see I have taken very little interest in the disease and for me this helps coping. I think I had my back pain for at least 6 months before diagnosis. regarding bones I was put on clodronate for the first few years and am now on Adcal. These help to strengthen the bones.The initial treatment I had was CDT followed by a SCT. The treatment wasn’t too bad and the SCT wasn’t too bad. The 1st relapse my consultant wanted to try something different but I asked could I have the same again as it had worked well with few side effects. He ok’d it saying we could change if it didn’t work. It did work. This was again followed by another SCT. Although I achieved another full remission the treatment and the SCT were worse than the first time – but doable. So not only is everyone different the ‘same’ person can react differently. I started my 3rd treatment in January 2018 which was 8 cycles (only had 6) of carfilzomib and dexamethasone with accompanying side effect medication with paraproteins becoming undetectable. This I think is a relatively new targeted treatment. I am now on a maintenance course for 10 cycles of the same but half the dose.
Before diagnosis the pain was quite bad but eased during treatment. The pain now does vary but only have to take painkillers when necessary. I still do almost the same things as I did before diagnosis but have to give it a little more thought.
My attitude is that it has had a go at me 3 times now and I have beaten it so if it fancies another try I’ll beat it again.
Hope this helps. Quite happy to answer any questions you have but as I say I don’t know a lot of technical details and numbers about my journey.
Best wishes
Kevin
Hi Paul, I was 50 when diagnosed at a critical stage – I have the Mm that affects kidneys rather than bones. I have a very aggressive type in how it impacts my kidneys but that does not mean it is difficult to treat. If you do have MM remember one thing – it is a unique disease and how it affects the disease/reacts to chemo is also unique. I have high risk factors making prognosis dire but it responded to chemo and I had an SCT within the year. It will be my 5yr act anniversary at Xmas – totally drug free and in remission and 6 years since diagnosis. Staging is not really important it’s how difficult it is to treat that counts. At my little hospital I met a lady who had 2 treatments in 12 years and on both occasions used the same chemo because it worked well – leaving lots of options still available. There are many successes so focus on this because you are younger and fitter than most to combat this disease (if you have it). One major thing I have learned is the treatment is easy in comparison to what goes off in your mind – so devote time and energy to acquiring the right mindset – living in the moment – one day at a time – it is like self harm re-living the impact of death on everyone else’s life so don’t go there! Focus on the “now” and explore coping strategies to assist you in this. Near 6 years on this is the first year I booked a holiday 6 months in advance! and I’m currently in remission. It is a real head **** so look to managing this aspect as this is totally in your control and will make everything seem so much easier. Fingers crossed it is not MM but if it is you’ll cope – it’s a long bumpy ride but you’ll manage it.
Rebecca
Hi Kevin
What a great story. Beat the beast 3 times…just what i want to hear.
Sounds like the chemo did its job very well. I can imagine there were some hard times during that period but you did it and youre still here.
Were you working at the time of diagnosis?
If so Did you have to give up or go part time?
I would assume you are now retired.
The not working bit is the thing i fear most. As ive stated i have a young family and need to keep working to keep a roof over our heads. My wife works but i am the main earner.
From what ive read, many people who have chemo do manage to keep working, i guess if it cures the bone pain and you dont suffer fatigue it is do-able.
I go back to my gp’s next week. I will find out results of my blood test. Im expecting platelets and possibly rbc to be low but hopefully liver and kidney function is fine. This should prompt my gp to refer me to a haemetologist and i can find out what im facing.
My wife knows im having problems with my bones (shes heard me whine enough) but ive not told her my worries about myeloma yet. Once i get the blood results and im sent to the haemetologiats i will tell her about the possibility of myeloma. I dont keep anything from my wife but i dont like to worry her until i know what im facing.
Thank you so much for replying, you and shaun have actually given me hope.
Hello Paul,
My wife was with me at diagnosis. She has been to nearly every appointment which does help as there is generally a lot to take in. Thought I was going to be told I needed a back op then hit with this. Had never heard of it. Yes I am retired. I couldn’t have asked for more help from work and colleagues when diagnosed. They were marvellous. Worked until about 2/3 into the treatment until the fatigue became too much.Had never been off sick before. Before all this I had planned to take early retirement and had been given a prognosis of 50 50 five years.So had a good think about it and decided to bring it forward. That was a decision I now regret as I didn’t realise how much I would miss it. Again the decision can also depend on how well you are in remission and the type of work you do. Initial prognosis I was told was 50 50 five years. I remember at the time not being too worried as I was sure I could beat it. I have been lucky in that every treatment option has worked but if they hadn’t there was always something else to try and I think that applies even more so today.
Best wishes
Kevin
Hi Rebecca
Thank you so much for replying.
Wow i didnt realise there was one that mainly affected kidneys.
I bet you were devastated when you were diagnosed. Does that mean you do not get bone pains at all?
6 years way to go! I can imagine its hard beating an agressive cancer.
Yes i agree about the worry versus the actual diagnosis. Im absolutely scared stiff that im at a stage where my bones are too weak to mend or theres something wrong with my heart or lungs or an organ that stops me having a sct. I would take any chemo that they offer and get the sct if it gives me a chance to get into remission and have more time with my family.
Hi Peter
I hope it is not myeloma, but it is better to know.
Compared to a lot of people on this page, I feel lucky.
After all the tests, I was diagnosed with smouldering myeloma Aug 2018
I had very high blood pressure, my gp organised routine blood tests,which my gp asked for further blood tests and an urine sample.
The tests came back and the go diagnosed myeloma, which was scary. I was referred to the haematologist within 10 days.
The tests came back as smouldering, and I am on a trial being closely monitored.
I thank God, my gp was on the ball, and acted quickly.
My gp,my consultant and trial team are fantastic, and I am in good hands.
I hope the results come back soon and it is not myeloma.
Tell your wife,it helps to worry together.
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