Tagged: Holidays
This topic contains 14 replies, has 5 voices, and was last updated by 
Hi, hope I’ve posted this to the right group. Not sure if I’m looking for advice, reassurance or just need to get my feelings out somewhere. I’m female and in my early 40’s. In January, I noticed I have frothy urine quite often so I visited my GP who did a kidney blood test for eGFR and an albumin urine test. My eGFR was ‘ok’ but not great and was 80mmol/L. The albumin test came back negative. So I just assumed everything was ok as no further testing was mentioned. The foamy urine has continued and sometimes covers most of the toilet bowl. After doing a little bit of research on Google, I’m now terrified I have Myeloma because if the protein isn’t albumin I can only see that it could be ‘Bence Jones’. I’ve seen a couple of articles online and in Myeloma forums that say frothy/foamy urine was an early sign. I’ve been back to my GP and they are now ordering a 24 hour test and looking for other proteins. In the meantime, I am absolutely petrified. I feel ok in myself most of the time but I am now so stressed I just feel as though I’m on the verge of tears all the time and I daren’t let my family know, especially when I don’t have any diagnosis for anything yet. I guess what I would like to ask if anybody reads this is what were your first signs of Myeloma? Also, does anyone know if proteinuria not caused from albumin could be anything else other than Myeloma? I know I shouldn’t jump to conclusions but I’m so scared and I’m also very angry at my GP for not following anything up when the albumin was negative in my urine sample. Thanks in advance for any information, advice or just for taking the time to read this. The only other thing I have is a bit of shoulder pain which I’ve had for a couple of years but it’s just like random deep twinges rather that severe pain so I doubt it’s connected.
Anyway, thanks again
Emily xx
Hi Emily
Firstly you’ve come to the right place to offload your fears. It is terrifying to contemplate cancer, whether or not you finally are diagnosed with one.
Frothy urine is a sign of kidney problems, but not necessarily myeloma, which is just one potential cause of kidney issues.
The definitive test for myeloma in 75% of cases is an electrophoresis test, which a GP can order. This will show whether you have a spike of Monoclonal proteins (paraproteins) which would indicate cancer- or a pre cancerous condition.
It is now known that a significant proportion of the population have a condition called MGUS, Monoclonal Gammopathy of Unknown Significance, or MGRS monoclonal Gammopathy of Renal Significance. These are not cancer, but pre cancerous conditions with about 1% chance per year of it developing into myeloma.
There is also a half way stage called Smoldering Myeloma that is usually not treated, unless the patient has high risk features, but is monitored, “watch & wait”. There is a higher risk of this developing into multiple myeloma, but there are people who have been Smoldering for 20 years!
I was diagnosed with unconcerning (to the doctor’s) kidney issues when I was diagnosed with myeloma with an eGFR of around 55,(with frothy urine) so a lot lower than yours (although I was older than you, and kidney function does decline with age). Just for a reference, dialysis isn’t usually given until eFGR is 15mmol/l.
For me the first signs (only signs, then or now) were anaemia and fatigue.
The classic signs of myeloma as you’ve probably read are high calcium levels in the blood, kidney issues, anaemia, bone lesions/fractures,and/ or frequent infections.
My Bence Jones urine test came back negative, but I did have myeloma nevertheless.
Have you had a blood test looking for your serum total protein level? This should be between 60 & 80 g/l. Any figure much higher than this might indicate a Monoclonal protein.
There is a type of myeloma that doesn’t produce paraprotein, light chain myeloma, which about 20% of patients have. Everyone produces some low level of light chains in their blood, but under 26g/l. This is usually detected with the Bence Jones test.
I should have said this first. Information on the internet tends to be seriously out of date in respect of myeloma. There have been many newly approved treatments over the past decade and patients are often living with the condition for many, many years. The average age of diagnosis is 70, and peak age of diagnosis is 80. People diagnosed considerably earlier tend to live much longer than prognoses given on the internet. Actually the new treatments mean even drs believe prognoses are 10 years out of date.
Use Myeloma UK, or Healthtree Myeloma or the International Myeloma Foundation for research, not general internet searches. They are terrifying, and inaccurate.
Best wishes
Hi Mulberry,
First of all thank you for such a lovely response and for taking the time to read my post.
I’ve had quite a few blood tests recently but I can’t see any for calcium. In September I was rushed in to hospital after a serious burn accident and these are the most recent blood results I have. They say, ‘abnormal but expected’ on the full blood count and I can see my white blood cells were nearly twice as high as a routine blood test I’d had a couple of weeks before for something else. No surprise with the state I was in upon arrival at hospital. I’d also had morphine and ketamine injections and I don’t know if the ketamine was before or after my blood was taken but morphine definitely was administered before and I have no idea if they impact on anything resultwise? I’m posting what I have though from that day as they are the most recent ones to see if anything stands out as I have no idea what I’m looking for. Looking at figures in brackets I think most look fairly normal?
UREA & ELECTROLITES (Abnormal but expected)
Serum Sodium – 138 mmol/L (133.0-146.0)
Serum Potassium – 3.2 mmol/L (3.5-5.3)
Serum Creatinine – 76 umol/L (43.0-71.0)
eGFR- 82 mL/min
Serum Urea Level – 4.1 mmol/L (2.5-7.8)
LIVER FUNCTION TESTS (Normal)
Serum total bilirubin level – 8 umol/L (0.0-20.0)
Serum alkaline phosphatase level – 32 u/L (30.0-130.0)
Serum total protein level 67 g/L (57.0-76.0)
Serum albumin level – 44 g/L (35.0-50.0)
Serum globulin level – 23 g/L (18.0-32.0)
FULL BLOOD COUNT (Abnormal but expected)
Haemoglobin concentration – 129 g/L (119.0-149.0)
Total white blood count – 9.30 (3.7-10.0)
Platelet count observation – 438 (150.0-450.0)
Red blood cell count – 4.71 (3.85-4.9)
Haematocrit 0.38 L/L (0.35-0.46)
Mean cell volume – 81.3 f/L (82.0-100.0)
Mean cell haemoglobin level – 27.4 pg (27.0-32.5)
Mean cell haemoglobin concentration 337 g/L (316.0-365.0)
Red blood cell distribution width – 15.3 (12.2-15.4)
Neutrophil count – 5.4 (1.7-6.6)
Lymphocyte count – 3.1 (1.0-3.0)
Monocyte count – observation – 0.5 (0.2-0.8)
Eosinophil count – observation – 0.2 (0.05-0.45)
Basophil count – 0.0 (0.0-0.1)
Not sure if any of the above are particularly relevant but I would be grateful for any advice if anything is noticeable in the above as I have no idea what most of the tests mean.
You’ve certainly helped put a bit of perspective on things for me though as I have clearly driven myself to very worst case scenario after my Doctor Google research.
I really hope that you are doing well now following your diagnosis.
Thanks again,
Emily x
Hi Emily
Please bear in mind I’m a patient rather than a doctor, and my experience of reading results is limited to my own.
Myeloma is multifaceted and tends to present differently in patients so you need a Dr to make an overall assessment of your blood test results.
The things I’ve noticed about your results are:
Your total protein level is in normal limits, I would expect it to be high in myeloma.
Your neutrophils are in good normal limits, often they are low in myeloma.
Your albumin level is fine, often this is low in myeloma.
Your haemoglobin level is good, suggesting you are not anaemic.
Your creatinine level is high, possibly in line with some sort of renal issue?
As you say, your burns will have affected blood counts.
In a nutshell, as a myeloma patient, these results do not raise obvious alarm bells.
I hope this helps reduce your anxiety while you wait to speak to your GP.
Best wishes, Jane
Thank you so much Jane. I fully appreciate you are not a GP but it’s really helpful to know the points you’ve raised above as I honestly didn’t have a clue which, if any of them, were of any relevance to Myeloma. I just have Bence Jones protein stuck in my head from Doctor Google (which I know I shouldn’t look on) and that’s all I’ve focussed on and I haven’t been tested for that yet. I’m going to try and stop dwelling on it until I’ve done my proper urine test now (24 hour). I’m waiting on my GP contacting me to say they have it for me to collect. You’ve really helped ease my mind tonight with all the information you’ve given me, particularly about how outdated the internet is for Myeloma treatment etc. The internet is fully to blame for how anxious and worked up I’ve got myself because it’s just so negative. Whatever happens with my upcoming tests I’ll definitely put an update on here.
Take care and thank you so much for your time and responses,
Emily
Just a quick update to say I now have my 24 hour bottle to begin tomorrow. Part of me can’t wait for it being out of the way but a bigger part of me is terrified of the outcome in case it is really bad news. Either way I’ll post when I know more. I also have another single sample tube which I will use for my first wee in the morning. I need to take that back to my GP for a dipstick protein test. Part of me wants to delay doing it but I know it won’t change the outcome and as with anything medical I’m sure it’s better to find out sooner or later if you have a life changing illness.
Kind regards,
Emily xx
I hope you feel it is positive getting these tests done and back for analysis.
Whatever will be, will be, but best to know, even if it doesn’t always feel like that.
I feel negative rather than positive as I’m so scared but you are absolutely right, what will be will be and I can’t change that.
Despite thinking I might be better not knowing (and I was really tempted to put off doing the urine collection) I know that catching things earlier is usually better in the long run and I also know if I don’t do it I will have it hanging over me making me feel this way until I do so best get it over with.
I think it makes me feel worse when I read that Myeloma is incurable. Saying that I have read quite a few stories about people in remission for several years and still going which gives me a little hope that a diagnosis doesn’t automatically mean everything is over xx
Hi Emily
Hope your tests turn out as you hope. I totally agree with Mulberry what will be will be.
My diagnosis was a fast one and a year on I’ve just had a SCT – if your diagnosis is Myeloma have a LOT of hope that diagnosis doesn’t mean everything is over! We all have to have hope or we wouldn’t do the treatment .
Please don’t look on Dr Goggle it’s frightening and out of date in many cases.
Thank you @jb2514. I was up early to take my bottle back to the GP surgery this morning before starting work so I guess I’ll know something quite soon.
Can I ask what your first symptoms were?
Also, this may sound a silly question but does a diagnosis then stop you from doing things like being able to take holidays abroad?
I’m asking because I had a bit of a breakdown night and when I said to my husband ‘What if I really do have cancer’ he said we would have to make the most of every opportunity with things but when he mentioned holidays it crossed my mind this might not even be an option.
I hope you don’t mind me asking questions and I really hope you are now recovering well from your SCT xx
Just seen the protein dipstick test my GP also requested is positive for protein :o( it doesn’t say what protein it is though. I guess I’ll have to wait for the 24 hour one for those results xx
emily40.
My myeloma was diagnosed one Saturday after I had had a pain in my chest went to A and E – given a CT scan and diagnosed with lesions and a broken rib and a highly likely diagnosis of myeloma- further tests and 5 days later I was started on induction treatment!
My wife and I had only booked a holiday to Italy 3 days previous to my trip to A and E. we’ve holidayed as much as we’ve been able in the UK this year and hopefully will have another go at travelling abroad when we can.
I was always of the opinion I didn’t want to read too much at the start about my condition- my wife was different and needed to read everything she could find- some of which really worried her. Someone told her “ incurable” had many meaning not all that “ the end was coming” it’s taken time for her to accept this. The stem cell wasn’t as bad as I had read it could be – please just take one day at a time it’s all we have no matter who we are
@jb2514 I’m glad you’ve been able to at least have some breaks away in the UK and I hope you’re able to venture further soon.
I think your outlook of taking one day at a time is a really good piece of advice. I’m going to try and think more like that.
I’ve read quite a few posts on forums where people are still in remission after several years and still going strong which is really nice to read.
I hope you continue to do well following your treatment x
Hi Emily,
Holidays are certainly doable during treatment. I could have done so, but decided not to have a holiday for my own peace of mind. I can then get treatment for chemo side effects from the medical staff who know me, and look forward/plan for when I was going to be in remission.
However, now that I am in remission (which started in July), I have been on three holidays with more planned. Yes, it costs a bit, but sometimes money is there for spending!
It is becoming easier to enjoy the holidays: at first, the fatigue (a common chemo side effect) meant that I had to rest a lot, but that has reduced.
These are suggestions for anyone with myeloma going on holiday:
1. Get travel insurance, disclosing myeloma.
2. Don’t go alone if possible. A companion can really help if you feel rough.
3. Take an EHIC or GHIC card if you are going to the EU.
4. I am choosing to only go to places that have excellent healthcare. Again, piece of mind.
Rabbit
Hi @rabbit and thank you for your comments. It’s good to hear that you are now being able to enjoy holidays again. I agree that while having treatment it is better to be safe than sorry. I am still waiting my results but it’s very reassuring to know that even if they are the results that I’m dreading, things will get better again and you can still have some ‘normality’.
I hope you continue to do well and thank you so much again for your post.
Emily xx
Referring to Emily’s blood results quoted on Dec 2, the Potassium result is low, but not dangerously so. I would expect that it would have been repeated by now.
None of the results quoted give any indication as to the Calcium value.
I had both high and low calcium during my initial treatment for Multiple Myeloma almost 3 years ago, high on diagnosis, and then low after the treatment for the high calcium value. I knew it was too low when my hands started locking up on me! A quick hospital visit and an IV invusion with Calcium in it, soon sorted that!
You must be logged in to reply to this topic.
