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.
I'm sorry you weren't aware of our online community when you were first diagnosed but I'm glad you've finally found us.
I'm sure anyone who has joined the forum recently who has been diagnosed myeloma will be really grateful for any support and advice you can offer them.
If no-one reaches out to you on this discussion, you can try using the search forum option at the top of this page to connect with our members instead.
I hope this helps and I look forward to seeing you around the forum soon.
Hello moorlander52 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 moorlander52 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
Hi. I’m just going through investigation I saw that on the Bence Jones test my proteins are at. 0.21 but immunoglobulins are normal and I’m absolutely terrified I have this. Everyone says try not to worry but that’s easier said than done
Hi Sam00190 after my last post I have had a 24 hour urine test and my protein levels are very low and well within range and so I’ve been told no further analysis is required. I still worry about it but not much more I can do right now. None of the blood results I’ve had from various tests have showed any concern so I’m stuck with no diagnosis of anything. It’s definitely easier said than done though when people tell you to try and not worry. I worry all the time. Are you having any further testing? What symptoms do you have? I really hope you get good and reassuring results back if you are x
I’m anemic and low iron and always have been . I went in to see if I needed to start HRT and then they decided to do a liver function test and bench johns. Apparently my white cells are raised but I have had dental infections and been on 3 courses of antibiotics and been using the normal cocodamol and ibruprofen to help with dental pain so apart from issue with teeth I feel fine.
I have low iron but I’m not anemic with it. Your white cells could easily be due to your infection I would have thought. Were your liver test results ok?
