[bonepain1970Participant]

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

[bonepain1970Participant]

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.

[bonepain1970Participant]

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

[finnParticipant]

Hi Paul
I was diagnosed in my early 40s about 6 years ago. I had had intermittent back and hip pain for a long time, I would say the first symptoms appeared 7 years before and the continuous pain about a year before diagnosis. I have had two lines of treatment, one SCT, and I feel great most of the time. Even though I have bone lesions all over my body, I have been mostly pain free since the first line of treatment. I think this is because I do lots of exercise such as yoga and pilates. Other sports that have high impact on bones such as running and golf hurt too much though. I do hope you’ll find out soon what is causing all that pain as not knowing is the worst part of the journey.

[shaun3Participant]

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

[bonepain1970Participant]

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

[bonepain1970Participant]

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

[bonepain1970Participant]

That should have read as im now struggling to see a haemetologist not not

[julius-issacParticipant]

Hi Paul,
I hope you don’t mind if I poke my nose in here but I’m in a similar situation to you, I am awaiting the results from myeloma screening – whatever that means.

So how did I get here?

Some weeks back I had a bit of a nagging back ache nothing too bad though. Then at the weekend it got much worse to the point that if I took a deep breath my back spasmed thus I could only take shallow breaths. My partner said “Right, we’re going to the doctor”. Obviously we couldn’t get an appointment anytime soon on the Monday so she rang 111 and after the inquisition they told us to ring for an ambulance. The ambo arrived promptly and they said you need to see your GP but now not 6 weeks’ time. They then phoned the GP surgery and got us an appointment that day. The GP examined me and said “I’m phoning an ambulance!”. I was then blue-lighted, siren and all, into Cheltenham General.

They admitted me to the Acute Care ward and did a whole battery of tests and pretty quickly realised I had a chest infection and in addition my AF was not being adequately controlled. They corrected this with medication and within 24 hours I was fine.

Now for the nub of the issue: in amongst the battery of tests they did MRI and CT scans. This showed that I had a fractured vertebra (T5) and a hemangioma in the same area. At this point, since the primary reason I had been admitted had been attended to they sent me home.

On the discharge report it actioned the GP to review my drugs regime and to chase up the “myeloma screening” that they’d initiated. There was no discussion at any time about myeloma and it wasn’t until I came to read the discharge report that I became aware of it.

That was about a month ago …. I’ve heard nothing from the GP and so I’ve booked an appointment with “a Dr. at the GP surgery”, i.e. not my regular Dr. to discuss the state of play. I’m not expecting much to be frank. I expect they’ll say “Oh, we’ve got no results, we’ll have to chase that up.”

Now I’m the sort of person that needs to know all the details so I’ve done some research – I know people counsel against this but I feel better the more I know, even if it is hard to face. By gathering information from multiple recognised sources you soon get to know when something isn’t right or that the findings might be unfounded. So I was a little shocked to find out that I might be waiting for a death sentence with a very short time on death row.

So Paul, I know where you’re coming from.

I’ve been racking my brain for signs in my body that might support or dismiss a myeloma diagnosis.
I still get a bit of pain in my back under my right shoulder blade, which is about T5’ish. It seems worse later on in the day especially if I stand for any length of time with my back unsupported, maybe because the vertebra settle through the day I guess.

I’d known about the hemangioma for quite a while, probably about 2003 but it gave me no problems and was just viewed as an “anomaly” so I think that is probably a red herring. My situation is compounded by the fact that I have recently had very serious cardiac surgery (12 hours in the operating theatre) and some symptoms, like fatigue, are to be expected whilst recovering.

So I’m somewhat unsure what to think. I just need to get more data/information, to get refered to the right/best specialist in this field if I do have myeloma. Under the NHS constitution one has the right to specify who/where you want to be treated. I believe that the Royal Marsden have specialists in this area so maybe I should investigate that possibility.

Anyway thanks for reading this far Paul. I’m glad you posted your thoughts because I’m at ground zero and it’s helpful to read the supportive responses that you’ve had. I guess we both have to wait and go through “due process” but it is good that forums like this exist and that people like you are courageous enough to share their thoughts.

Regards,
Phil.

[julius-issacParticipant]

Hi Folks,

Oh, just realised that this thread goes back to last September and then posts cease, I hope nothing untoward has happened to Paul.

Never the less this thread has been very helpful to me, so thanks to all you who took part in it.

Regards,
Phil.

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