That should have read as im now struggling to see a haemetologist not not
Hi guys
Fbc came back normal. Platelets were low but within range so loed knows why my blood isnt clotting or why im bruising so easily lately.
Im not struggling to get to a haemetologist because my fbc hasnt shown anything and i just have many bone pains. Hopefully i can convince the gp to do more tests…..i really need to have the spep test, i dont have 6 months to mess around do physio and seeing a back specialist, i need diagnoaing now before my vertebrae collapse.
Thanks
Hi guys
Fbc came back normal. Platelets were low but within range so loed knows why my blood isnt clotting or why im bruising so easily lately.
Im not struggling to get to a haemetologist because my fbc hasnt shown anything and i just have many bone pains. Hopefully i can convince the gp to do more tests…..i really need to have the spep test, i dont have 6 months to mess around do physio and seeing a back specialist, i need diagnoaing now before my vertebrae collapse.
Thanks
Hi guys
Could i ask if any of you had any abnormal fbc on your blood tests prior to diagnosis? Or was a paraprotein blood test needed to see any abnormality?
During the night (as usual) I was thinking about the rate of survival after 5 years for the patients who are diagnosed with myeloma at a younger age (below 49). I fit in the category where 75% survive over 5 years although im very near the top age of that statistic. Thats a pretty good statistic for an incurable cancer and the odds for 5 years are not too bad and i would assume may even rise quite a bit in the next 5 years looking at the tend analysis.
Then i started thinking about the ones who didnt make the 5 years or even a couple of years. What are the major obstacles? Im obviously worried that i wont be an easy case. Ive had these bone pains for so long now and the fact im bruising easier and blood isnt clotting could mean my marrow bone is heavily compromised with myeloma cells.
So my question is:- Would the multiple number of bones that had myeloma lesions make a different to the prognosis of the cancer? I have so many bone pains, even in places like the left scapula and left upper arm. Then theres both knees which would more likely be refered pain from the femur bone.
Also how long does a blood test normally take to get back to my gp?
Paul
Hi Bren
Thanks for replying. I take it with smouldering it has not actually affected any bones. Wow you were lucky that you had a gp on the ball.
My gp clinic is so big its called a medical village. It is big and its busy. It takes 3 weeks to get a non urgent appointment with any gp, meaning you could get any out of around 30 gp’s. If you actually ask for a specific gp you could be waiting well over a month…i kid you not!
So becuase there are lots of gp’s you never get the same gp and therefore they dont know much about you, other than a quick read of your notes before you see them. I told so many of those gp’s of my growing number of bone pains i was experiencing. Not one ever mentioned myeloma due to my age. however, 96 people in my age group were diagnosed in 2015. That doesnt sound alot but its not many less than lung and stomach cancer.
Some of the gp’s did test me for calcium and alp and over the few years i think i had one or two fbc’s but none thought, hang one this guy has multiple bone pains we better check for myeloma.
Even the gp yesterday was dismissing my concerns and said i was too young and the bone pains will be just with aging! Quite an oxymoron right there. She wasnt sure about the bruising hence why i got 4 biles of blood tests done.
Hi Kevin
Yes once i go to the actual heametologists or oncologists she will be there. Shes my rock with everything in life and i know she will be there for me when i need her. We met at school so have been together for more than 30 years. We have 2 wonderful girls and she is my soulmate. I knew by our 2nd date we would spend the rest of our lives together. Which is why if i have this god awful cancer i will fight to my last breath to beat it and be with her.
I really do want to tell her but at the moment i think its best i wait until ive had the first lot of blood results at my gp’s next week. As soon as i find out they are abnormal i will tell her.
Wow 50/50 chance i can imagine that was hard to face but you definitely did the right thing….proved those statistics totally wrong.
I was actually reading an article about myeloma before i realised that it existed. It was a massive shock to the system to suddenly see the symptoms and realise that there is a cancer for multiple bone pain. I will never forget that article!. At that point i had heard of sarcoma in the bones and obviously mets to bone from prostate cancer (it happened to a friends father) but never knew of a blood cancer that affected multiple bones, that was a new one on me.
Its strange as most people would have heard of leukaemia and maybe non hodgkins lymphoma but i bet if you asked 100 people on the street, 99 would never have heard of it. Its strange because blood cancers dont tend to have the word cancer in them.
Paul
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 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.
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.
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
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.
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.
