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C) unfortunately Google is often out of date, as treatment improvements move very fast, so items from even 3 years ago may reflect treatments and prognosis which are no longer relevant.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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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

Hi everyone, well, I find myself here again with worries about my blood. I daren’t speak to any friends or family.

Update on my bloods:

My calcium (which is what I was really worried about) is normal at 2.4 which is a great relief.

However, I’ve now been recalled to the doctor for more blood tests as my last full blood count showed an elevated red blood count and haemoglobin concentration result.

RBC - 4.99 [3.85-4.9]

Haemoglobin Concentration - 153 g/L [119.0-149.0]

All my other levels are within range.

I’ve looked back at other full blood count results from the past couple of years and these have always been within the normal range until now.

Sept 23:
RBC - 4.71
HC - 129 g/L

Jan 23:
RBC - 4.63
HC - 130 g/L

Apr 22:
RBC - 4.77
HC - 140 g/L

I fully appreciate nobody is medically trained on here but does anybody know if these results are something that can fluctuate often or if they could mean something more serious?

I have already made the mistake of consulting my own worst enemy, Doctor Google in the hope this could just be related to a vitamin deficiency as I have really low iron and vitamin D. Unfortunately it just brought up another type of blood cancer called Polycythaemia Vera. Now I’m terrified I have that and it’s two weeks until I’m booked in for another blood test so I’m just going to be worried sick again until then.

Thanks to anybody taking time to read this.

Emily xx

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Hello there @EmilyF40
Sorry to hear that you are worried about your blood counts. May I ask what symptoms have lead you to have further blood tests and is this request by your GP?
Haemoglobin and Red Blood cells can fluctuate and depend on many factors like diet, medications and smoking. May I ask whether you are taking any iron supplementation, as you mentioned in a previous post that it was low in the past?
As you mentioned, Google will produce all the possibilities of why the blood counts are slightly raised and include the most serious conditions which is not always helpful. Your blood counts should always be considered in context to medical history, medications, previous results and current symptoms.
If you would like to talk through this our Support Services are here: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

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Thank you @GemmaBloodCancerUK for taking time to reply.

I did take iron supplements for a short period but had to stop because they upset my stomach really bad. I was retested for iron last month and it had slightly improved and was in range but at lower end. The doctor didn’t seem too concerned about low iron with it going up a little bit. I also have quite low folate and low vitamin D which I have just started to take supplements for. The full blood count was done before I started taking the vitamin D tablets though.

All this began with me worried about frothy wee and convincing myself I had myeloma. I’ve also had a few bowel issues and tests for that - all of which came back normal. I had a blood bone profile done last month for calcium and that came back normal too.

I’m really confused about why my red blood cells and haemoglobin are suddenly out of range on the high side yet my iron is very low.

I guess I’ll just have to wait and see what happens once my next full blood count results come back but I don’t have an appointment until mid May for the retest.

My GP has requested the repeat full blood count due to my previous results last month.

I have never smoked and am vegan, although I am currently a couple of stone overweight.

Emily

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Oh @EmilyF40 that waiting and not knowing are the worst feelings and unfortunately I have found that there is a lot of it.
@GemmaBloodCancerUK has given you a brilliant response.
Please just be very kind to yourself and let us know how you get on.

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Hi @Erica, thank you. I was over the moon when I found out my calcium results were normal and felt I could finally move on from all my stress and fear and now it feels like another kick in the teeth. It’s like I can’t catch a break from worry and stress.

This page has really helped just by being somewhere I can vent and say exactly as I feel. I think I’ve already said I don’t feel I can tell family or friends any of my anxieties and concerns.

Part of me feels like a big fraud because I have no diagnosis of anything up to now and there are so many people fighting much bigger and real battles it makes my worry seem rather irrelevant but I can’t express how grateful I’ve been for every single response since this began last year.

Emily xx

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Hi @EmilyF40 I am a 32 years old male and I have foamy urine for around 3 years. I was concerned with myeloma in the beginning too because all my protein tests were negative. Recently I have noticed that my RBC and HGB are slightly over the reference range for male. My folate is low and I have IBS. We seem to have a lot in common and I am really curios about what it is but it is probably not blood cancer.

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Hi @aerd4 wow! How strange is that. You sound just like me, do you have low iron too?

The foamy urine scared me for so long but after my 24 hour test came back without any excess protein I have just started trying to not look when I pee lol.

I’ve looked back as far as I can on my NHS record at blood tests and looking back over more than 10 years my RBC has always been between 4.5 and 4.9. In 2012 it was 4.96 which is almost what it was a month ago (4.99).

My HG levels have always been within the markers until now though.

My recent bowel issues have also been put down to IBS as I have tested negative for FIT and various other stool and blood samples.

Have you had many tests where you’ve been outside the normal range for RBC and HG?

Has your GP said if they have any idea what’s causing the recent increase in those results and are they worried?

I’m terrified of having the retest in case it’s even worse.

Thank you for taking the time to reply to me.

Emily.

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I don’t have low iron as far as I know. My blood was also probably always high but I started the tests after I noticed foamy urine. So I don’t have the history before. I have non-allergic rhinitis and I believe it reduces the oxygen flow since my nose is stuffed during the nights. It may cause high RBC and HGb to compensate (as in sleep apnea).

I lived in two countries and none of the doctors were worried about my lab results. Maybe mostly because I don’t have any symptoms that effect my life.

I can suggest you to not overthink. You are probably fine. You could have other symptoms if something was wrong.

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Hi @aerd4 you are right about not overthinking. Unfortunately I can be my own worst enemy sometimes and it’s really hard to stop myself thinking in such a negative way.

The frothy urine is quite a puzzle though as not a single test has raised any red flags for what could be causing it and the doctors don’t seem concerned about it, which I hope is a good thing, so now I just don’t look if I can help it.

Going to try and keep my mind occupied for the next week or so until I have my repeat full blood count x.

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I don’t want to take real patients time here because we are only concerned people probably without an actual cancer. So please feel free to reach me on Reddit if you need to talk about it. Here is my username: u/shim4_en4g4

There are other people on Reddit with similar concerns.

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Hi @aerd4 a great big welcome to our forum and we are all real patients and you take as much time as you want on here.
As I always say the waiting and not knowing are the worst feelings and I have found we often share similar ones.
Look after yourself

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