Hello - living with myeloma

Just joined, was diagnosed with Myeloma in 2015 and only just come across this group. I thought if anyone has been diagnosed with this cancer recently I could help to put their mind at ease.

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  • Hello  I have just joined too and although I haven’t yet been diagnosed with Myeloma, I am absolutely petrified that I may have it.

    A year ago I saw my GP because my urine is really frothy. I’m female and in my thirties and otherwise I thought I was generally healthy. They did an albumin test and it came back negative and also a blood test for kidney function which wasn’t great but was ok (80 eGFR). I never thought much more about it as nothing was followed up by my GP after that however the foamy urine continued and most of the time covers the toilet.

    I then read it could be a sign of Melanoma so I’m now absolutely terrified. I have been back to my GP and they are sending a 24 hour urine kit for me to do to look for other proteins. As albumin has been ruled out both a year ago and again a couple of months ago when I saw my GP for something else I’m now really worried the only other possible cause for my constant foamy urine is Bence Jones protein. The only other issues I have are twinges in my left shoulder that are like a mild ache which randomly comes and goes but I’ve had that for a couple of years and although it hasn’t been xrayed the physio I saw said it was my rotator cuff.

    i feel a bit of a fraud commenting when I have no diagnosis and am just assuming something but I’m so scared and I can’t find any other explanation. Any advice would be great fully received. X

  • Hello Smartygirl, I started with pains in the spine which to cut a long story short turned out to be a broken spine ! I wouldn't like to frighten you talking about treatment, just take it one step at a time. I've been in remission for seven years so there really is hope if the worst comes to the worst. I wish you the best of luck.

  • Hi  and thank you for such a quick reply. I cannot begin to explain how scared I am of having a myeloma diagnosis after some of the horror stories I’ve seen on the internet. Seven years in remission is good to hear and I hope you are doing well. I don’t even know if the 24 hour test will be looking for Bence Jones or not but my GP said it would be to look for all proteins. I’m not aware of any other than albumin (which was already ruled out recently) and Bence Jones and that’s why I fear the worst. My shoulder pain is noticeable daily although it’s very mild and I’m not sure if I’m causing it with all my stressing. My head is a mess and I’m struggling to function. The not knowing is really hard x

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  • Hi  and thank you for such a quick reply. I cannot begin to explain how scared I am of having a myeloma diagnosis after some of the horror stories I’ve seen on the internet. Seven years in remission is good to hear and I hope you are doing well. I don’t even know if the 24 hour test will be looking for Bence Jones or not but my GP said it would be to look for all proteins. I’m not aware of any other than albumin (which was already ruled out recently) and Bence Jones and that’s why I fear the worst. My shoulder pain is noticeable daily although it’s very mild and I’m not sure if I’m causing it with all my stressing. My head is a mess and I’m struggling to function. The not knowing is really hard x

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