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Scared I may have Myeloma

Emily1234
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Hi everyone,

I’ve posted this first in the diagnosis group and then realised it should probably be here instead. I’m Emily and I’m 42 and terrified I may have Multiple Myeloma.

I visited my GP in January when I first noticed I have quite frothy urine most of the time. It doesn’t matter if I have a full bladder or not and I drink lots and so definitely not dehydration. They ran a couple of tests and my eGFR has consistently been between 78-90 for the last few years, most recently in a routine test a couple of months ago it was 82 and my creatinine has always been slightly higher than the reference limit in the 70’s. They have also done a couple of albumin/creatinine ratios which came back normal from urine samples.

Since January, I assumed my frothy urine, which covers anything from half to all of the toilet bowl most of the time, must be normal. Then a couple of weeks ago I read an article about a lady who was almost my age had been diagnosed with Myeloma but believed her first symptom to be foamy urine a couple of years prior to diagnosis. Now I’m absolutely terrified that my frothy urine is Bence Jones protein as albumin has already been ruled out.

I have been back to my GP and they have ordered a 24 hour urine test. I have completed this yesterday and am now anxiously awaiting the result. Scared is an understatement. I’m absolutely petrified.

I’m not sure what I’m looking for on this group but I daren’t say anything to my friends or family as I don’t want my worried to become theirs, especially when I do t have a diagnosis of anything.

Has anybody else had frothy or bubbly urine as one of their early signs? With all the information on Doctor Google (who is my biggest enemy) I have pretty much written myself off and I am so scared and worried of what may lie ahead if I do have Bence Jones protein that it’s making me I’ll just from thinking about it.

Thank you to anybody who takes time to read this. Like I say, I’m just wondering if this was anybody else’s initial signs before they were given a Myeloma diagnosis?

Emily xx

  • Hi Emily,  Dr  Google  is our enemy,   i am Vespa  AKA  Kevin,  Male   66 with MM   and undergoing treatment,     first  i am not a health care professional,    just  responding to be a caring person,   and support ,          Frothy urine  is not something i  experience,  and this is the first i have heard of that  being a pre curser  to MM,    i think your GP  (  with a bit of pushing from you)  may   be consider   sending off for some Blood  tests,  and explain your concerns,    this  would pick up  more        indicators than possibly Urine  as of  course  MM is  blood  cancer  !    it took my own  GP  four   visits before the Blood tests showed   high levels of Calcium,     and then fast track to Cancer  checks and bone marrow   biopsy  and  MRI  scan,  i dont   wish this to   frieghten you more,  but      early  detection is   what  the recent  Blood cancer .org  was  campaigning about,         This was not the retirement  plan i had for me and my wife of 43 years,        Do not hesitate to ask the GP  for what you think  may help you and them,  get the info you need  to  be  clear on the   situation,  as  not knowing will only cause you more anxiety,     please come back  to the forum  and share    when you know,    there   are  some great people  on here to offer good words of support and indeed Macmillan      books    if you need them  are great  source of  fact and not Google fiction,    Kevin

  • in reply to Vespa

    Hi Emily,  Dr  Google  is our enemy,   i am Vespa  AKA  Kevin,  Male   66 with MM   and undergoing treatment,     first  i am not a health care professional,    just  responding to be a caring person,   and support ,          Frothy urine  is not something i  experience,  and this is the first i have heard of that  being a pre curser  to MM,    i think your GP  (  with a bit of pushing from you)  may   be consider   sending off for some Blood  tests,  and explain your concerns,    this  would pick up  more        indicators than possibly Urine  as of  course  MM is  blood  cancer  !    it took my own  GP  four   visits before the Blood tests showed   high levels of Calcium,     and then fast track to Cancer  checks and bone marrow   biopsy  and  MRI  scan,  i dont   wish this to   frieghten you more,  but      early  detection is   what  the recent  Blood cancer .org  was  campaigning about,         This was not the retirement  plan i had for me and my wife of 43 years,        Do not hesitate to ask the GP  for what you think  may help you and them,  get the info you need  to  be  clear on the   situation,  as  not knowing will only cause you more anxiety,     please come back  to the forum  and share    when you know,    there   are  some great people  on here to offer good words of support and indeed Macmillan      books    if you need them  are great  source of  fact and not Google fiction,    Kevin

  • in reply to Vespa

    Hi Kevin, thank you so much for such a quick reply. Google has taken me down a really dark hole and I know I shouldn’t look but it has not stopped me.

    I have had quite a lot of blood work done recently, and although I’m not sure which if any of the tests give any indication of Myeloma, everything has come back within the ‘normal’ ranges. I can’t see that I’ve had one done for calcium levels though so I might ask about it when I get my results back from theb24 hour urine test.

    I feel a bit of a fraud being on here as I haven’t actually had a diagnosis for anything but I’ve read so much about Bence Jones protein in urine being a sign of MM that I’ve convinced myself of the worst.

    I hope you are doing well following your diagnosis. I will definitely post an update when I get some results (good or bad). The waiting is just so stressful.

    Emily x

  • in reply to Emily1234

    Hi Emily,

    I am Stephen, I was diagnosed by accident back in June, It is scary of that there is no doubt, but like the others responses I would stay away from google, I would recommend Myeloma uk, Macmillan and Maggies Centres. Myeloma Uk has a large selection of material for reading and like Macmillan and Maggies offer help lines. 

    You are not a fraud and no questions will ever be considered stupid or foolish, oh and a good rant is good for you.

    Wishing You Well

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