[GayeParticipant]

Dear Amelie – well we are certainly learning a lot about you and what a great way of raising awareness of myeloma as well as giving pleasure with your music. I wish you good luck!

I was very interested with the comment that Denmark is far behind other European countries in diagnosing cancers other than, say, breast cancer. We are often told in the UK that we lag behind most of Europe with survival rates because our diagnosis is often not early enough ie are the GPs not aware enough of all the different cancers? In this thread you can see that some of us were literally diagnosed by a simple blood test very early on whilst others went undiagnosed for many, many months. It does seem to be a lottery but I think it will long be the case for myeloma whilst it remains a rarer cancer. Thankfully in our case here we have Myeloma UK doing battle on our behalf and for that I think we are all very grateful.

Love, Gaye x

[AmelieParticipant]

Dear Gaye,
Denmark and the UK was together at the bottom 🙁 As far as I understood it also concerned breast cancer, but still 75% survive so there are far worse diagnoses.
Myeloma UK seems to be a very effective organisation – I wish we had something like that!
Love
Amelie

[jmsmythParticipant]

Dear Amelie

As has been said this horrible disease is so individual. 4 years ago my husband was not feeling well. Run down – no back pain but doc thought might have infection in kidneys. After battery of blood tests Frank was sent to haematologist and after a marrow biopsy myeloma was diagnosed. A bolt out of he**. He has smouldering myeloma and after 2 years got terible back pain. We thought it was to do with the myeloma but after MRI scan consultant said there was something like a crushed vertbrae at the bottom of spine but she said that it was an old injury.

I wish you well with your speech.

Take care
Jean

[roncantrillParticipant]

Hi Amelie,

Anything that helps to focus attention on the need for early diagnosis of this horrible disease has go to be good and I hope your efforts are well received. Like Gaye, my wife Pauline was diagnosed after a blood test looking for diabetes. I think that anemia is probably the most common early test indicator coupled with the usual associated symptoms of tiredness and poor recovery from common ailments. Anemia is a common side effect of most cancers so that is probably insufficient to justify a test specifically for Para-proteins but, together with the skeletal aches and pains however insignificant they may may appear at the time, there must be a point at which the vital test is justified. It would be interesting to find out just how much it costs for this test. Unfortunately it seems from other posts on this site that a negative result is not necessarily conclusive but that does seem to be in the minority. One interesting coincidence is that Pauline's GP who had no previous patients with Myeloma had two confirmed cases on the same morning. We are just grateful that he was on the ball. The trouble is that if everyone cries wolf it may have the wrong effect but we have to try. Nevertheless, give it your best and let us know how it goes. Ron.

[Author]

Posts