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.
So here is my version
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!
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.
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
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.
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!
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.
Skal to that as they say in Swedish
ps oh no that couldn’t possibly be, in that glass she is holding could it???
10 responses to “The Myeloma Trilogy”
As long as it isn’t frothy urine in the glass!
Ah ha, what do you think?
Love the humour and creativity, Wendy! Good luck or Friday or Lycka Till, as they say in Swedish! x
Would you actually have a tattoo? Bizarrely, it’s something I’ve been thinking about, but not a dragon… nor light chains either!
After my transplant I did contemplate having a tattoo, starting anew and all that. Then I realised that wasn’t a good time to have a tattoo due to risk of infection after transplant and now the notion has mostly gone off me, I will stick to stick on ones!
I checked with my Transplant nurse about the safety of having a tattoo and she said that as long as it was a clean, reputable place, it would be fine. It would seem that I’m out of the danger zone for infections. I’ll let you know if it goes any further than contemplation. 🙂
Hi Wendy, I hope that is lager in the glass! I can relate to the sea foam pee. My kappa light chains reached 16,200 mg/l before treatment. Luckily my kidneys are still alive and kicking! I got a slot in a clinical trial last year for newly diagnosed myeloma using carfilzomib, Revlimid and dex at the US NIH near Washington, DC. Keeping up with the Scandinavian theme, my Dr. there is originally from the Karolinska Institute in Sweden….the man is a true saint and an awesome myeloma expert. I hope you get access to carfilzomib soon. I wish you all the best. Try some aquavit! Skol. Terry from the tiny state of New Jersey.
You are so clever! I love the analogy of the Stieg Larsson books. Loved the books, too. Love, Carole Leigh
Hi Wendy! Sorry you re feeling unwell, no respite from straddling the two worlds, I reckon it must be quite a lonely place at times…so this is a hello!!!
Thanks for the info and update, I. Appreciate you sharing some of the science of what’s happening with those of us in the non myeloma world…good luck with the triathlon training… lots of love Prue xxxx
Thoroughly enjoyable and I too have had the frothy urine -most disconcerting.Hope the ztrial keeps to time and🍀🌹 Liz