[AmelieParticipant]

Next month I am going to give a speech at a charity arrangement for a cancer organisation.
They do a lot, but it is my feeling that they spend 80% of their resources on breast cancer and completely overlook other kinds of cancer e.g. myeloma.

It is a serious problem because as long as there is no awareness of the disease, it will be diagnosed very late. Noone expects their back pain to be a result of mm, and also the family doctors don't even think about it.

Now my question is: how easy is it to discover mm? If someone goes to his doctor with back pain could the doctor possibly make a normal blood test to see if it is mm?

Thanks in advance for your help!

[brochoParticipant]

Hi Amelie well done to you for giving a speech , very brave!!Why dont you ring the nurses on the info line , they are best placed to give you up to date info and may be able to help in other areas love Bridget x

[PerkymiteParticipant]

Best of luck with the Speech. Very good advice from Bridget.
kindest regards
David

[AmelieParticipant]

Thanks for the tip – I will call the nurses. 🙂

[GayeParticipant]

Amelie – I don't know about a simple blood test to detect MM but my own GP first became suspicious of mine through an unrelated routine blood test for possible thyroid problems. He obviously was not happy with the result and suspected myeloma. A second blood test was taken and shortly after MM was confirmed by the hospital. I had no symptoms of myeloma and that is the problem. Because back pain is a big part of myeloma, doctors tend to treat the pain at first rather than looking for the problem and it can take ages to make the diagnosis. It is as much about GPs awarenesss of myeloma to make the connection between back pain and I would say that most GPs don't see many cases of myeloma throughout their careers.

Mine was very easy to diagnose initially by blood tests. My GP did not suspect it but found out quite accidentally looking for something else!

Good luck with your presentation Amelie.

Gaye, x

[AmelieParticipant]

Thanks for your reply, Gaye!
And good that your GP was awake!
My friend John went to the doctor with his back pain and was sent to the physiotherapist. Only when he couldn't get out bed anymore he was taken to the hospital and after faulty diagnosis of lung cancer they finally detected the mm. I can't stop thinking that if they had thought of it before his two vertebraes could have been saved 🙁
Although it is a rare disease, it should be standard to make the blood test in cases of serious back pain.

[DaiCroParticipant]

I think that a simple blood test can pick up indicators of most things… if they ask the lab to do a full check… instead of a specific, which most do.

After being diagnosed with bone cancer as a secondary cancer (primary unknown) I was given a whole battery of tests, & scans including one looking for paraproteins (but I have light chain and no problem with paraproteins). I was transferred to the head of nuclear medicine at one of Wales's top hospitals and in nine months of agony and rapid deterioration he did not conduct one single blood test… not even a thumbprick. I was on warfarin during the whole of that time and had to have weekly blood tests at my local hospital but they only looked for one reading – the coagulation, nothing else… even if the other answer was right under their nose.

As my American friends quite often say – go figure.

Dai.

PS The site would not let me post the above… because I had put a hyphen in thumbprick and they considered it inappropriate language.

[TinaParticipant]

Hello Amelie,

Patrick had an accident in the garden and hurt his back. He went to the local Gp two weeks later as his back was not any better had a blood test and was told by the doctor of his suspicions – the GP was right – confirmed a week later by a biopsy.

Regards
Tina

[AmelieParticipant]

Thank you Dai and Tina for the replies!

Why in h… don't all the GPs make a blood test if people have serious back pain?
The more I dig into this disease the more frustrated I get because of lack of awareness, slow access to new treatments etc. 🙁

[VickyParticipant]

Hi Amelie, I think it is great that you are making this speech! Don't forget though that Myeloma is such a varied illness. I have never had back pain or any other bone problem and my illness was discovered, eventually, after months and months of anaemia and lots of serious infections. They kept treating the infections but nobody tried to find out why I was having them, despite 3 spells in hospital. I kept on and on saying there must be a reason why I was anaemic and kept being ill and tired all the time until eventually they did the blood test that found my myeloma (10 months after the first bout of pneumonia). So be careful, it is not only bone pain that might signal myeloma! Vicky xx

[AmelieParticipant]

Thanks for your reply, Vicky!
Sure they should also have checked you for mm earlier. I know there can be different symptoms, my point is that there is only checked for mm when other options have been left out and that is too late, especially when it is so simple to check.

[tomParticipant]

Hi Amelia

Good Luck on the speech, such a daunting thing to do am sure.

As Vicky says its an Individual illness and a difficult one to spot even the Dr's struggle:-S

So I wish you Luck on your Speech Day 😎 it will be terrific

Tom xxx

[AmelieParticipant]

Thank you Tom! It is actually a concert and I'm gonna play, but I really feel I also need to say something. I have been playing for them before, but now after my experiences with mm it of course means much more to me. Just before Xmas I read in the newspaper that our country is far behind in diagnosing cancer. Basically people only know about breast cancer which the cancer organisation has done a lot to inform about. But other cancers are more or less forgotten 🙁

[tomParticipant]

Hi Amelie

Yes that is correct, and I aplaud you for using your musical skills to highlight our plight with MM.

Yes it is a Cancer that is well behind all the others at the moment but with people like your goodself am sure it will soon be brought to the forefront 😀

Once again Well Done and Thank you

Tom "Onwards and Upwards" xxx

[AmelieParticipant]

Hi Tom,

Although John was diagnosed back in March I still sometimes can't believe this has happened and my brain starts to try solving the problem. Seriously I have caught myself thinking about how to transfer years between people as if it was data between 2 computers. The powerlessness is overwhelming. I know I can't rescue him, but this arrangement still makes a little bit of sense so I will just work on that.
I support the "Onwards and Upwards"!
Amelie

[Author]

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