Ongoing foamy urine and terrified it could be Myeloma!

Hi @CaroleCW thank you for your comments. Crikey, I didn’t know Bence Jones was linked to anything other than Multiple Myeloma. So much for Doctor Google being the font of all knowledge! I hope you don’t mind me asking, as you’re the first person to answer who’s actually tested positive for Bence Jones, did you have any particular symptoms?

Forgive my ignorance but is Lymphoma the same as Myeloma with regard to being “treatable” but “incurable”?

Thank you so much for taking time to reply. I hope you are now doing well following your diagnosis.

Emily xx

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Hi there, to answer your questions

  1. I was hospitalised with dangerously high levels of calcium in my blood, that’s when the Bence Jones test finally showed positive. This was a very rare situation though.

  2. there are over 60 types of lymphoma, only some of which would produce proteins to give a positive Bence Jones test. Yes my particular type of lymphoma is treatable but not curable . That’s because it is slow growing so treatments such as chemotherapy can’t zap all the cells (chemo works to kill off active - fast growing - cancer cells, so in my type of lymphoma a few part grown cells are always left at the end of treatment. My chemo/immunotherapy treatment finished Jan 2021 so I’ve been in remission since then (and fit and well, doing normal activities). I know my lymphoma will come back some time , but that could be 1 year or 10 years down the road. The “incurable” label sounds scary but isn’t necessarily so, I view it that I will need bouts of treatment from time to time, but still hope I’ve got many years ahead of me (also because new and better treatments are developed all the time ).

C) unfortunately Google is often out of date, as treatment improvements move very fast, so items from even 3 years ago may reflect treatments and prognosis which are no longer relevant. It can useful to help you get up to speed with the language of blood cancer but only your consultant is likely to know the best treatment for you and your personal prognosis. Blood Cancer U.K. website is an excellent source of current information on each type of blood cancer (if it ends up that is your diagnosis).

Hope that helps
Carole

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That really does help @CaroleCW thank you. I’m pleased to hear that you are in remission and able to live normally again. That has been one of my worries that if I have a worst case diagnosis then I’ll never have any normality again. While I’ve been lurking on a couple of the blood cancer forums I have read many positive stories of people who are still around a long time after diagnosis and still in remission. I think your outlook is a great way to think - sometimes you may need further treatment. I’ll update when I get my urine analysis back which I would imagine will be some time next week now as I only handed it in yesterday morning.

Emily xx

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Morning, so I’ve just looked on my NHS app and not sure what I should make of this as it says ‘Satisfactory’ and ‘No further action’ but very little in the results apart from this:

24 hour urine: 2623 mL
Urine total protein: <0.06 g/L (0.0-0.14)

Also, my Protein to Creatinine Ratio has come back ‘Normal’ and is within range which is good.

I’m hoping this is all good but will wait and see what my GP says.

I thought it would mention light chains etc but maybe they don’t do that if it’s within acceptable ranges. Hopefully if this is all for now they will recheck in 6 or 12 months to monitor if my levels increase? Anyway, I thought I’d share this as I said I’d update when I heard some news. If I hear anymore I will add to this post.

In the meantime, thank you sooo much to all of you that have read and replied to my messages, you have all helped just by being there.

I wish each and every one of you all the best on your journeys.
Emily xxx

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That sounds positive

I imagine light chains would have been mentioned if they were out of range
That also sounds positive that they aren’t mentioned

Now go live your best life bless you :slight_smile:

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Oh @EmilyF40 you have made my day.
Yes, my results only give a couple of words if they are out of range, sometimes the one word normal, but it depends on where the samples are tested and who tested them.
I think a celebration is in order for you and now you can really go out and enjoy your your life.
Be very kind to yourself

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Hi Everyone, well here I am again 3 months later because I’m really scared and not sure what I can do. Saw my GP again yesterday and I am having a lot of gastric issues (which I’ve had for some time) and also random pains in both my arms. I’m off to get my bloods done again and they’re testing for iron (which was previously low), folic acid, vitamin D, a couple of other things I do not remember and calcium. It’s the calcium rest I am so worried about as I have never had this test previously and I’ve read that high calcium (which I have several symptoms for) means you have advanced cancer. I feel so sick and I know I’m not going to be able to focus on anything until I’m put out of my terrible misery whether it’s bad or good news. Not sure why I’ve found myself back here as I don’t know anything for sure but I daren’t let other people know how scared I am. Is Google right? If my calcium levels are high does it mean the absolute worst and less chance of any long term effective treatment if it is MM? Thanks for any advice. X.

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Ask your dr to do an antibodies test. i was ill for a long time ,back and forth to my gp never getting anywhere, i told them about the frothy urine but it was dismissed as umpteen different things. they weren’t concerned. When i finally saw a haematologist he ordered several blood tests and then as an afterthought threw in the antibodies test. My blood was full of them, i was diagnosed with mm the next day and started treatment that afternoon. ive had the chemo and a stem cell transplant and am now in remission and on maintenance, it is as many people have said very treatable. I dont mean to scare you and certainly hope i dont but all i know is that 1 test earlier on would have given me my diagnosis sooner, the worry is the worst. I still have frothy urine and when i mention it no one cares yet! :woman_shrugging:t3: i am well monitored and its in their hands. Good luck x

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Hi @EmilyF40 Perhaps Google is not your best friend at the moment.
Ask your specialist nurse, cardiologist or your GP your fears and questions, Google does not know you and your whole medical history, test results etc. we are all complex individuals.
Please do let us know what they say and let them know your anxiety.
Be ever so kind to yourself, try and keep yourself occupied and please do keep posting on here

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Hi again

Simply put from me as I have myeloma boney disease. Bone breaks down faster than it can repair. Bone is the calcium that is filtered through the kidneys
Mine were on the verge of breakdown but recovered once I started Chemo and had Zometa a bone strengthening infusion
I have also copied and pasted a bit from myeloma uk below

Hypercalcaemia

Bone is high in calcium and as it is broken down, a large amount of calcium is released into the blood.

Once the body’s ability to maintain normal levels is overwhelmed, calcium levels in the blood remain high. This is known as hypercalcaemia.

Hypercalcaemia can cause a variety of symptoms including:

Loss of appetite

Nausea and vomiting

Constipation

Increased thirst

Confusion

General weakness and

Prolonged hypercalcaemia can cause damage to the kidneys.

Hypercalcaemia is most often found at diagnosis and is much less common once treatment