Tag Archives: frothy urine

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

Just before a very cold and white Christmas in 2010 I was diagnosed with multiple myeloma. I literally collapsed into a heap in the corridor of the Manchester Royal Infirmary when I found out what that meant. I thought my life was over and I would be dead within months.  I was right about  life being over as I had experienced it before myeloma but thankfully wrong about my demise being imminent. Since then life has been different, far more challenging both physically and emotionally, but bizarrely more rewarding and dynamic. Four years on, 2 autologous stem cell transplants, several different types of treatment, multiple relapses, hundreds of blood tests, hospital visits, 9 bone marrow biopsies and numerous holidays later, I am still here! That I am celebrating that is good but bittersweet as it serves to remind me of the loss of my previous healthy life and the passing of others with myeloma who didn’t make it to 2015.

Thanks to all those who have followed and commented on my blog in 2014. That my blog has been looked at 19,000 times is amazing albeit that the most popular post is still frothy urine, as it was in 2013! And I still have it!

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SKOL!

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Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Travel, Uncategorized

Urine saves the day!

Since I started showing signs of relapse in January 2013, I have been living with a huge amount of uncertainty as anyone does with an incurable cancer, there are hopefully periods of remission and stable disease as well as time of treatment and recovery, but through all that time, my light chain results are a constant source of anxiety and stress.  I am still trying to cope with that feeling of always being on a knife edge. At the  clinic appointment at the end of each cycle the focus is on my latest results. Are they in normal range,  what happens if they are not, what happens if they are, will I have another stem cell transplant, when will that be? Am I normal (they can’t answer that!)? The last few months my kappa light chains have been teetering on the upper edge of normal range. What does FLC Kappa 3.3-19.4 mean to you? Nothing hopefully!

What does it mean to me?  Everything, it is the holy grail. It defines the normal range for kappa free light chains which we all have but which are elevated in the type of Myeloma I have. Being in normal range generally signifies complete remission. Before I started treatment after relapsing last year they went up to 6000. At diagnosis they were estimated to be over 10,000. Now they have been creeping up and are 44..3 according to the latest trial test results and 23.4 according to our lab results so since my last post Not Good Not Bad, they have become less good and not normal. Also as there have been 3 trial results consistently out of normal range I am considered to have relapsed according to the trial criteria. There was some concern at my last clinic appointment that I would be kicked off the trial. Plan A was to apply to the trial sponsors for approval to remain on the trial. It would take a few days to find out if I could. However it wasn’t clear what Plan B was going to be if we didn’t. I came away from my appointment feeling abandoned and confused as my consultant (whose last day it was) was returning to Australia and seemed very uncertain as to the alternatives. I guess it wasn’t going to be his problem anymore but I left with no follow up appointment, no Plan B and no start date for another cycle.

Just prior to my appointment I had booked a week’s holiday at a yoga retreat in Ibiza. Because I was in such an anxious state I nearly decided not to go, my anxiety compounded by coming off the steroid dose I had taken early in the week. But I did go and doing 3 hours of yoga a day in beautiful surroundings proved to be a great distraction.  I found the yoga both physically and mentally challenging and it was good for taking my mind off my situation. And yes I really was there for the yoga and not out clubbing every night! I have always wanted to go to Ibiza and it lived up to my expectations and is a beautiful island with a nice vibe (now does that sound a bit like I’ve been clubbing!).  Apart from doing yoga, I went to the nearby beach to watch the sunset most evenings, read and rested quite a lot, swam, sunbathed, took some walks and explored the island. I think the photos show just how chilled it was (it’s not me in the yoga poses!)

IMG_0658 IMG_0659 IMG_0643 IMG_0608 IMG_0647

I found out towards the end of the week in Ibiza that the trial people had said I could remain on the trial because my urine results were stable and that is what they look at in conjunction with the light chain blood tests I have been having. Yippee but unexpected reasoning. Every 28 days as part of the trial disease assessment tests I have to do a 24 hour urine collection which involves peeing into a large container over a 24 hour period and bringing it in to the hospital the next day. I initially thought they sent off the whole container to the trial lab in Paris but it turns out that they mix it and mix it and reduce it to a small pot to be sent off! Anyway I have never paid attention nor has my medical team to the results of those samples as the SFLC (serum free light chain test) is considered to be more accurate and obviously much more convenient. Prior to the trial the only other time I did a 24 hour urine collection was when being diagnosed. Quite why they place more reliance on this rather outdated urine test rather than the SFLC test I don’t know, it also seems odd that my medical team didn’t know that. Had they known that we could have avoided all the stress and uncertainty at my last clinic appointment.

So I get to stay on the trial and started a 13th cycle a week ago, thanks to my urine which remains frothy, see my post Frothy Urine for an explanation of why. I have stopped being concerned about that but really it is the only symptom I have that has been caused by myeloma and reminds me on a daily basis that I have myeloma at the moment. I feel fortunate compared to others I know who are dealing with bone pain and lots of other issues caused by Myeloma.

As to what the plan is, there isn’t one, it is really just a case of waiting for the results at the end of each 5 week cycle and then deciding whether I start another or go off trial and proceed to second autologous stem cell transplant.

In the meantime, here’s to my urine!

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Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Travel

The Myeloma Trilogy

My blog updates recently have been about these strange and difficult times I am going through with my relapse and whilst this update doesn’t bring any good news I wanted to take a more light hearted approach to my current situation with more than a passing nod to my passion for Nordic Noir which started for me with the Millennium Trilogy by the late Stieg Larsson with its complex and compelling central character, Lisbeth Salander.

millennium-trilogy-covers

So here is my version

Part 1

The Girl with the High Kappa Light Chains (aka The Girl with The Dragon Tattoo)

Below is a representation of a light and heavy chain component of a protein so if ever I was to have a tattoo I suppose I could have this motif repeated in a chain round my muscular biceps (not!) but I think I would prefer a dragon tattoo!

forms-IgMforms-IgMforms-IgM                                 girl-dragon-tattoo-cp01

My kappa light chains have risen again to 2725 from 1975 mg/litre or something like that. I felt upset and disappointed that the course of dexamethasone I had been given (see my post Trials and Tribulations)  to try and hold the myeloma at bay hadn’t appeared to have had any effect (or maybe it stopped them being higher who knows?).  This time though I am finding it hard to shrug the high number off so easily as I am now displaying symptoms of active myeloma which are causing me not to feel so well for the first time since relapse was confirmed.

One feature of my rising kappa light chains over the last few months (which doesn’t make me unwell) has been the reappearance of frothy urine which is foamy and bubbly in appearance, like a lager top or bubble bath. For those that are curious this is what it looks like in the toilet bowl! I am back to drinking 3 litres of fluids a day to keep my kidneys being flushed out.

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I have written in detail about it in a previous post, Frothy Urine. I noticed it when I was first diagnosed and had acute renal failure but as my light chains went down with treatment and eventually into normal range it tailed off and became intermittent and at the point when I wrote about it, it was because of residual kidney damage meaning my kidneys leaked proteins occasionally. This surprisingly has turned out to be my most googled tag line after myeloma so clearly a lot of people have anxieties about protineuria and although it can be a sign of something serious it isn’t necessarily so. At the moment it is being caused by my high kappa light chains as excess light chain proteins are being excreted into my urine through my kidneys. The concern is that my kidneys could become clogged up with those proteins as they did last time and cause casts to form which prevent the kidneys from functioning. I am now being monitored for my kidney function weekly and at the last test my kidney function was slightly abnormal but nothing to worry about. Another sign that my myeloma is becoming active though

Part 2

The Girl Who Displayed High Fever (aka The Girl Who Played with Fire)

Since I last wrote about my temperature spikes which resulted in the dreadful 2 day stay in hospital,  A Room with a View, I  have had quite a lot more although I managed to get away with attending the Haematology day unit 2 times instead of being admitted. I was observed, blood tests and cultures taken and sent home with no cause of infection established. About two weeks ago I started getting a temperature of 38 degrees centigrade daily and was feeling shivery and unwell. I was given a course of oral antibiotics but these had no effect and the only thing that helped was taking paracetamol but of course this masks infection and only lowers the temperature temporarily. This period caused me much anxiety and resentment, but being reassured that there was no infection, later became more of a debilitating nuisance requiring a lot of resting and keeping warm or cool depending on my body temperature. The doctors are putting it down to myeloma related fevers. But I  camped at a music and arts festival a couple of weeks ago straight after escaping the day unit, had my fevers, took paracetamol and had a good time in the circumstances. The friend I was meeting up with there checked out where the nearest A&E was and promised to take me there if I needed to go. I didn’t. I have played tennis a couple of times too which I really enjoyed.

On the fire theme, my red blood cell count is below the usual range for females, not much but enough to make me slightly anaemic which explains my increasing fatigue and low energy of late feeling short of breath and wondering how I will ever be able to do any triathlon training, let alone the triathlon in 3 weeks time (an update on the triathlon is coming very soon). Again this is a common symptom of myeloma, (and also a side effect of the chemotherapy that is used to treat myeloma).  I mentioned feeling resentment before and what I resent is that I am now experiencing symptoms of myeloma which are starting to impact upon my health without actually being to take any benefit from having any chemotherapy to treat them. The only positive to the misery of being on toxic chemotherapy is the expectation that it is reducing the disease burden. Yet apart from the Dexamethasone I am still waiting to start treatment so nothing is happening except I am not so well right now when I could be not so well on chemotherapy but at least getting the benefit! I always wanted to be fit and well when I started treatment but it seems that the balancing act has tipped too far in favour of waiting for the trial to open rather than starting treatment off trial.

Part 3

The Girl Who Kicked Ass on Dex (aka The Girl Who Kicked the Hornet’s Nest)

Yes I have once again been given a short course of Dexamethasone, this time more to keep my kidney function stable which I hope works more successfully than the last course did for keeping my myeloma at bay. When I took the first 20mg on Saturday mornng I felt my fatigue go and became filled with a surge of energy which was just what I needed as I had a 101 things to do that weekend that I hadn’t had the energy to do in the week. It seems to have stopped the fevers too which is great. What fabulous stuff , I know I’ll crash when I stop taking them but it’s worth it for now. What I really need is to start treatment and I was fully expecting to when I went to my clinic appointment last Friday to start something off trial if the trial wasn’t open but my consultant it seems had other ideas. He told me that Onyx trial still hasn’t opened at my hospital but it is getting closer to being ready as they had the initiation meeting the day before and at least he had a pack in his hand with the trial details. It could be open next Friday with me having a bone marrow biopsy and some other tests required for the trial and then starting treatment just over a week later as the dexamethasone needs to be clear of my system for 14 days before I can start the treatment. He made a cursory offer of treatment off trial there and then but I had 5 minutes left before I had to leave to have a skeletal xray survey so it seemed pointless to do that if the trial is really that near to starting. So can I hold on? Will it be worth it, I hope so?

In my dexy state, I have this fantasy that I could send Lisbeth Salander on a mission to get the Onyx Trial to the MRI. There are quite a few Onyx trial centres running in France so she could set off on her motorbike from Stockholm in her black leathers looking gorgeous and ride south to France. She could fake some ID to get into the  hospital (I visualise this as being somewhere in Paris) break into their IT centre, hack into the Onyx trial data, copy it and then hack into the Central Manchester Healthcare Trust database and copy everything over creating me as their first patient. She would design the randomisation process so that I could only get Carfilzomib, the newer drug. So when I go to my appointment (perhaps with her?) this Friday, it is miraculously open, I sign up, get randomised to Carfilzomib! The drug is delivered and off I go!

Here is Lisbeth Salander in action on her motorbike and me on my motorbike during my rebellious student days. I don’t look quite as cool and mean as Lisbeth Salander but hey I look quite cool. I seem to remember I liked posing on it more than I did riding it!

motorbile                                              P1020568

Once more I must be a patient patient and hope that I can get started on treatment soon. In part because I have not been feeling quite so good recently,  I am ready and resigned to leaving the normal world behind me for a while and entering the myeloma world I talked about in my last post (trials and tribulations).  Letting the chemotherapy do its work and hope that it does and that I can manage the side effects.

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Skal to that as they say in Swedish

ps oh no that couldn’t possibly be, in that glass she is holding could it???

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Frothy Urine

In the weeks before my diagnosis in December 2010, I noticed that my urine was foamy and frothy.  I found out that this is a sign of proteinuria. There was much worse to come.

Proteinuria (/prtˈnʊəriə/ or /prtˈnjʊəriə/; from protein and urine) means the presence of an excess of serum proteins in the urine. The excess protein in the urine often causes the urine to become foamy. Proteinuria may be a sign of renal (kidney) damage. Since serum proteins are readily reabsorbed from urine, the presence of excess protein indicates either an insufficiency of absorption or impaired filtration.

The nurse at my GP practice told me there was protein in my urine when she did the dipstick test. I didnt really know what that meant and didnt worry about it at the time. The dipstick test couldnt confirm what type of protein or how much.

It turned out for me to be not only a sign of renal damage but also of the presence of an abnormal protein known as Bence Jones protein, named after the scientist that discovered it.

A Bence Jones protein is a monoclonal globulin protein or immunoglobulin light chain found in the blood or urine, with a molecular weight of 22-24 kDa. Detection of Bence Jones protein may be suggestive of multiple myeloma or Waldenstrom’s macroglobulinemia.

Bence Jones proteins are particularly diagnostic of multiple myeloma in the context of end-organ manifestations such as renal failure, lytic (or “punched out”) bone lesions, anemia, or large numbers of plasma cells in the bone marrow of patients. Bence Jones proteins are present in 2/3 of multiple myeloma cases.

The proteins are immunoglobulin light chains (paraproteins) and are produced by neoplastic plasma cells. They can be kappa (most of the time like me) or lambda. The light chains can be immunoglobulin fragments or single homogeneous immunoglobulins. They are found in urine due to the kidneys’ decreased filtration capabilities due to renal failure, sometimes induced by hypercalcemia from the calcium released as the bones are destroyed or from the light chains themselves.

The Bence Jones protein was described by the English physician Henry Bence Jones in 1847 and published in 1848

Thumbnail for version as of 05:22, 17 November 2008 This is what it looks like!

When I was admitted to hospital with acute kidney failure,  I had to do all my urine in bed pans so that it could be tested over a 24 hour period, I wasnt told why at the time but now I know they were testing for Bence Jones protein which can only be determined by 24 hour collection.

Over the next couple of months as my kidney function returned to normal having been 10 to 15% of what it should have been at the time of admission and I started treatment for myeloma the frothy urine seemed to come and go. It wasnt every time like before.

My  haematology consultant didnt seem to think it was anything to worrry about but couldnt really provide me with an explanation of why this was happening so she referred me back to the renal unit. I should have had a follow up appointment with them anyhow after I was discharged from hospital. The first time I had an outpatient appointment in December 2011 typically I wasnt having any frothy urine and no protein was found but neither was any real explanation given to me by the young (aren’t they all!) junior doctor. I had a further appointment on 26 June when I saw a lovely more senior renal consultant who took the time to explain to me why I was getting intermittent frothy urine although again no objective evidence could be established.

She told me that when I had acute kidney failure my kidneys were probably permanently damaged

I had intrinsic damage to the renal tubules caused by acute tubular necrosis (ATN), I dont remember what I was told at the time but “renal biopsy showed ATN and on re review a few casts” is on my discharge form. How this works in myeloma is that the tubules are increasingly damaged by the large protein load and large obstructing casts frequently form within the tubules. The combination of interstitial fibrosis and hyaline casts surrounded by epithelial cells or multinucleate giant cells constitutes myeloma kidney.

The myeloma casts are pale pink, pretty isnt it!

The tubules of the kidney can also be damaged simply due to  the toxic effects of these filtered proteins.

So with treatment of prednislone which is a steroid and intravenous fluids my kidney function recovered and then with my treatment for myeloma, the high level of free light chains started reducing and luckily I regained normal kidney function fairly quickly and importantly I have maintained it. I was probably hours away from needing dialysis when I was admitted and I know of people with myeloma in remission who still need dialysis due to the damage caused.

So it seems that as my kidney tubules are permanently damaged and I have a few casts, a bit like scar tissue I guess, which mean from time to time I will leak protein into my urine and as long as the myeloma is under control and the protein levels are not too high then it isnt a problem. Strangely enough I now rarely see it in my toilet at home but do in the ones at work.  It is one of the reasons why I still try and drink 3 litres of water  each day to keep flushing out my kidneys. I was told to drink this amount at the start of treatment to flush out toxins and there is differing views on whether I should still be doing this but at my last clinic appointment my consultant said I didnt have to as during remission I should try and live as normal a life as possible which shouldnt involve going to pee all the time! He suggested 2 litres of water would be fine and so now I am being a little more relaxed about it.

However seeing frothy urine is always a reminder of my condition and the fragility of my situation.

I am however hugely appreciative of just how normal my life is right now 11 months post transplant, apart from the frequent infections I have no aches and pains, no physical limitations, no fatigue (no more than anyone else that is!), just frothy urine and curly hair!

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