Tag Archives: onyx trial

The Party’s Over

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At my clinic appointment on the 1st August, I found out that my kappa light chains had risen quite considerably from 54 to 195mg/litre (up to 19 is normal). So it seems that the increased dose of  Velcade that I referred to in my last post Upping the Ante had no effect.

The new,  young and pleasant doctor I saw who has replaced the lead myeloma specialist, Dr Gibbs, who sadly (probably not for him!) went back to Australia wasn’t quite sure what to do next although it was clear that I would coming off trial. He asked me to attend clinic the following Wednesday to allow him time to speak with his colleagues about the best way forward. I appreciated the fact that he did not try to hide his inexperience.

I spent a rather wet weekend staying near Penrith in Cumbria with some friends. I was pretty anxious and gloomy about what is effectively a second relapse, my anxiety and fears exacerbated by steroid withdrawal. However the gentle beauty of the Eden Valley, the moody majestic peaks of the Lakes, even in the pouring rain,  combined with the company of good friends helped take my mind off my situation.

On Wednesday I saw the same Doctor again. He suggested that I had one cycle of PAD which is a more intensive treatment regime and lasts 21 days, the aim of which would be to knock the light chains down to closer to normal range. After completion of the cycle I will have a bone marrow biopsy to assess the percentage of abnormal plasma cells in my bone marrow and if less than 10%, I will be having my second autologous stem cell transplant probably around mid to late September. The party is over!

I have had the PAD regime before, two cycles in fact during my induction treatment prior to my first transplant. It includes Velcade, a very high pulse of Dexamethasone each week and a standard chemotherapy agent called Doxurubicin.   There is the possibility that my disease has already become resistant to Velcade but it is at a much higher dose on the PAD regime and works synergistically with Doxurubicin so fingers crossed, it is a tough regime but bearable if only for one cycle.

I am now on Day 15 of the cycle and have finished the treatments in the day unit but what is left this last week is the worst for me, the dreaded steroids.   I’ve already described in my post Dexamathasone just how awful I find them.  I have been on a very low dose over the last 6 months (just 16mg a week) and found the effects minimal . The first week of this new regime I was on 160mg!!  Not so bad the days on, apart from sleepless nights, but the crash from Friday to Sunday is unbearable.

It’s not going to be a pleasant or easy next few months but at least it is a plan, the absence of which I have struggled with over the last 6 months or so.  I knew that Velcade wouldn’t last forever and that I would be having a second stem cell transplant, it was just a question of when.  I would have liked more control over the timing and to have avoided the need for further chemotherapy but it is virtually impossible to have any control over the course of this disease. I suppose I could have chosen to have had the transplant when I had reached complete remission after 5 cycles at the end of November but I decided with my consultant to continue on the trial on a lower dose and extend the cycle to a five weekly one. I guess this was a bit of an experiment for him as velcade as maintenance therapy is quite new and untested. My quality of life was pretty good and as I have learnt there is no rush to proceed to the next treatment/procedure as none of them are curative. If something is working with minimal side effects then why stop it?  The downside is living with a very stressful level of uncertainty, having to waiting for results at end of each cycle to determine if I should start another cycle but I was learning to live with it.

I started this new regime exactly 12 months to the day after starting treatment following relapse when my light chains were 6000mg/litre and I  was becoming quite ill with myeloma again. I’m in a different place now, both mentally and physically. It will also be just over three years since my first transplant on 1 September 2011. There seem to be numerous coincidences date wise in my journey with myeloma, I think they exist for all of us but perhaps they are more firmly implanted in my memory. There are significant ones that I will probably never forget such as the date of diagnosis, date of transplant, date of starting a new treatment, date of relapse as well as anniversaries of the same. And of course I have had to become fanatical about writing down on my calendar, dates and appointments for clinic and treatment, having attended hospital over 100 times this past 12 months for treatment!

I thought when I started treatment a year ago that my life would be curtailed by the effects of the treatment but after a tough first few cycles I have enjoyed pretty good quality of life. I’ve been able to carry on working, play tennis, take part in a triathlon, go on hikes and of course holidays of which there have been many!  In essence I’ve had the outward veneer of a “normal” life but beneath the surface is my cancer world, with its endless hospital appointments, tests, fatigue, stress and infections. I find it hard to integrate the two worlds, part of me doesn’t want to (and hasn’t really had to) but as I move closer towards a second transplant I don’t think I will have much choice.

I went for a lovely walk yesterday below Kinder in the Peak District, the heather on the moors was abundant and beautiful with a fragrant aroma of honey, the leaves have started to fall and the sun was mellow and low. The school holidays are coming to an end and autumn is almost here. Approaching my transplant and the next stage of my journey feels like going back to school after the summer holidays.  New uniform, new classes, teachers, a little more grown up, apprehension mingled with curiosity about what lies ahead.

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Upping the ante

I haven’t posted a medical update for a while partly because there hasn’t been much to report and partly because I’ve been enjoying life and this fabulous hot summer we are having in the UK seems to find a way of taking up most of my free time. I have been away a lot, trips include to Somerset to visit family, Orgiva in Andalucia to visit a friend  and a visit to Otley to see the Tour de France Grand Depart and more recently a short break in the Manchester Royal Infirmary!

Some photo’s below although not of the MRI!

 

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So here goes. I have nearly completed the 14th cycle which is now a 5 weekly cycle with Velcade once a week for the first 4 weeks plus of course the dreaded Dex (steroids) which is a fairly low dose now and I have remained on the Onyx Endeavour trial (see my post Urine saves the Day) My last Velcade injection was yesterday. It is usually on Mondays but on Sunday night after a fun weekend in Nottingham visiting friends I had to go to A&E with a high temperature (39,2*), anything 38* or over is considered reportable plus I’d had diarrhoea and was feeling shivery. Damn nuisance. I arrived 10pm and eventually was given IV antibiotics and told I would be admitted. I lay on a hospital trolley in a hot room with bright lights and the sounds of other patients groaning and kicking off which wasn’t conducive to sleep.  At 4am I was admitted to a bed in a side room on the Acute Medical Unit, slightly better but not a minute’s peace with interruptions for observations, forms to be gone through,drips to be attended to and no pillow! Managed to doze till around 8.30am when I was brought some welcome tea and soggy toast. And then the usual wait to see the ward doctor and much later on a doctor from haematology. I persuaded the haematology doctor to discharge me with oral antibiotics  as my temperature was stable and I hadn’t had any diarrhoea for a while. He agreed on the basis that I said I would have some one with me that evening and would call haematology if my temperature went up again. Yes of course I said to both although a little vague on the former so I was eventually discharged early evening, phew!  An initial diagnosis was viral gastroenteritis.

I am much better for being at home and resting and the diarrhoea is on the way out!! These things happen when on treatment and any infections have to be taken seriously because of my lowered immune system but fortunately this is the first admission I’ve had in the 12 months since I started treatment and apart from the flu I’ve got off fairly lightly. However the love affair with velcade may be coming to an end soon as my kappa light chains have risen again out of normal range even on our lab tests (see my post not good not bad ). At my last clinic appointment on 27 June, it was agreed that I would have another 5 week cycle at an increased dose (from 1.0 to 1.3 so about 30%) but if that didn’t either keep my light chains in check or even better to decrease then I would proceed to an autologous stem cell transplant either without further treatment or with a more intensive cycle of chemotherapy depending on how high my numbers have risen and/or the results of a further bone marrow biopsy.

My next clinic appointment is tomorrow and I will find out the results of the light chain test I had done on Monday (this was after my 3rd Velcade injection). I feel surprisingly calm about finding out the results tomorrow which will determine the next stage of my journey. I realise that I may be leaving my readers on tenterhooks, a little taster of how I feel most of the time but the  waiting is nearly over and I promise to do another update shortly on the outcome!

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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!)

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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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Viva Las Velcade!

This post is about the wonderful Velcade, the chemotherapy that I am on. If you want to know more about it you can click on the link.  I have started my 10th cycle of Velcade and Dexamathasone on the Endeavor trial, (very aptly named as it certainly feels like an endeavor!). My disease is stable and my kappa light chains in normal range since the end of the 5th cycle (see my post And on the sixth cycle). So good news, I’m still in remission!.

Hey, this warrants the inclusion of the dancing cat from an old post! I love the dancing cat but have some reluctance about putting him on again because  the post that I used it on to celebrate the fact that a previous test result that was sky high was erroneous but later on I learnt that it was right, the test that was wrong etc. I do hope that the dancing cat isn’t a bad omen.

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What the heck, lets throw in the ballerinas as well!

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I’ve been on continuous treatment for over 6 months now. I have become so used to this extraordinary way of living that it is not extraordinary to me anymore. I have attended the haematology day unit Mondays and Thursdays for the first two weeks of every cycle to receive a subcutaneous injection of Velcade (that makes 36 times). I leave work around lunchtime then go the day unit.  I sometimes have blood tests first and observations are always done. The Velcade comes out of the fridge having been ordered from pharmacy especially for me. The curtains are drawn around my chemo chair to give some privacy and I expose my bruised and battered stomach for the nurse to find a new site in which to inject the Velcade. She pinches some fat (of which fortunately there is plenty) between her fingers and injects the velcade over a period of around 10 seconds. It stings whilst it is going in and after I have had my observations done 15 minutes later I am free to go. The whole process generally takes around an hour but sometimes longer depending on how busy the day unit is.

I have never felt any immediate side effects and quite often go food shopping on my way home and or go for a run. I may feel tired later but that is counteracted by the steroids that I take on the day of and the day after treatment. A couple of days after the injection, the site starts to redden and bruise and gets extremely itchy and sore. I’ve been experimenting with different lotions and potions, aloe vera gel provides some relief. Other than fatigue which has lessened over time, I suffer from constipation and more recently aching calves. My legs feel like I have walked 10 miles but I have done nothing at all. This could be due to nerve damage caused by the Velcade, one of the main side effects of Velcade is peripheral neuorpathy but this is usually in the hands and feet. My consultant is keeping an eye on it.  The other side effects I experience are more to do with the steroids but as the dose has been reduced these have lessened.

Since my light chains went into normal range, the dose of Velcade and Dex has gradually been reduced to minimise the side effects. The previous 9 cycles involved 4 doses of velcade over a 21 day period, the 10th cycle is less dose intensive and involves 4 doses of velcade over a 35 day period. This is the lowest dose possible on the trial and the idea is for it to be more of a maintenance dose. I will have another stem cell transplant this year but I don’t know when. It rather depends on whether and how long my remission is maintained on the maintenance dose as at some point my disease will become resistant to it.  I never know what will happen from cycle to cycle or how many more cycles I will have and neither does my consultant, we just review matters at my clinic appointment at the end of each cycle. I have got used to living with uncertainty like this but it is tiresome to explain to others in the normal world.

When I finally started chemotherapy last August I assumed that my life would be on hold, that the side effects would be too great to really do much and that I would wait until after treatment to recommence my life but although the first couple of cycles were a bit rough, things have got better.  I suppose my body has got used to Velcade and the reduced dose of steroids has really eased the low mood I talked of in dexamethasone the good the bad and the ugly. Life is too precious to ever be on hold, even on bad days, it is for living now to the best of my ability, whether on chemotherapy, in remission (or both) or even when relapsing.  It is almost impossible to make any plans but in my week off treatment at the end of each cycle, I have taken trips to Majorca, Cornwall, Barcelona, Somerset, London and Lanzarote (yes that was where the photographs were taken in my last post, Keep your chin up).  I’ve also been working (to pay for all these breaks!), playing tennis, walking, getting back into running,  and in a couple of weeks time I’ll be dog sledding in Finnish Lapland!

And so I have my extraordinary routine which I have incorporated into my fairly ordinary life.

Viva Las Velcade!

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Taken in El Golfo, Lanzarote

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Dexamethasone: the good, the bad and the ugly

I have a hate/hate relationship with Dexamethasone, but I have to acknowledge that it has knocked my light chains down all on its own prior to starting treatment  and whether I like it or not, it is part of my treatment and I have to get on with it. This is about my relationship with Dex.

The Good Stuff

Dexamethasone is a corticosteroid seemingly used in all treatment combinations for myeloma and sometimes on its own, in fact Dexamethasone, given in high doses, is the most active single agent for the treatment of myeloma.  I find this quite astonishing given the development of the many new drugs over recent years.  Dex also increases the ability of chemotherapeutic agents to destroy myeloma cells as well as helping reduce inflammation and allergic reactions to chemotherapy. Quite why or how it is so effective in the treatment of myeloma nobody seems to know.  It appears to cause programmed cell death, also known as apoptosis and can trigger the destruction of myeloma cells.  So that is really good.  I know this absolutely as before I started treatment waiting for the trial to start I was given two 4 day courses of Dex with about a month in between to try and keep the myeloma under control. Before I started the second course my light chains had gone sky high to 6400 but a couple of weeks later they had dropped to 2900.

However it does come with many strings attached in the form of side effects. The good ones for me are:-

1. More energy on the days I take them. I don’t take them everyday but on days 1,2,4,5,8,9,11 and 12 of my 21 day cycle, I take them on the day I have Velcade and the day after. Thanks to Dex, I have danced, stayed up later than usual, played tennis,  tidied up the garden for the winter and cooked dinner for friends.  Dex has helped overcome the fatigue caused by the chemotherapy. I am usually more upbeat and confident on dex days.

2. Erm, can’t think of anymore good things………

Although not a side effect, I quite like the fact that the tablets I take are supplied by Onyx (the trial sponsors) and the writing on the box is in German with a leaflet stuck  onto the box in many languages. The tablets are also quite pretty as they have a curvy criss cross pattern and they are 5mg per tablet whereas the UK standard ones are 2mg. My trial bloods are sent to a lab in France to be tested so I feel as if I am participating in some special stylish european project!

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The Bad

1. Insomnia and sleep disturbance. I am often wide awake at 3 or 4 in the morning, unable to get back to sleep but also unable to do anything useful with this time other than stressing about how I am going to get up for work in the morning.

2. Dex gives me an insatiable appetite for sugary junk food and this is precisely the kind of food that I shouldn’t be eating at the moment because I have steroid induced diabetes. Dex raises my blood sugar levels on the days I take it and I have to be careful what I eat ie cut out the sugary, refined foods which are what I crave.  I monitor my blood sugar levels with a testing kit although it has never been made clear to me what I should do if they are too high or what symptoms I might experience. The docs wanted to put me on Insulin but I said I would try and manage it through diet. However on the days I don’t take dex, I eat plenty of cake and anything else I can find in the cupboard or the fridge.

3. Following on from the above, not surprisingly is weight gain, can’t sleep, have something to eat, crave food, raid the fridge etc etc, I can still find plenty of non sugary junk food to eat. Weight gain is pretty common on steroids, unfortunately corticosteroids are not the type of steroids which can turn fat into muscle, I think those are anabolic steroids.

4. Muscle wasting,  I have gone from a fit triathlon competitor to a soggy shape in the space of a few months. Oh how the mighty have fallen!

5. On from the above, I wish I could channel the energy that dex gives into doing some exercise but unfortunately another side effect that I experience is heavy legs, they sometimes feel like they are filled with concrete which of course makes it difficult to run, walk or do anything much.

6. Slightly blurred vision, like my glasses always need cleaning.

7. Hirsutism and thinning of hair on the scalp.  I have more facial hair and a faint moustache but my hair is thinning on my scalp. Not very attractive!

8. Red round face, often called a moon face, the classic sign of taking steroids. People on steroids should have their own Moonies cult!

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Whilst googling images of a moon face, I came across this image below about Cushings Syndrome which is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Long term use of dexamethasone can lead to Cushings Syndrome and it appears that I already have quite a few of the symptoms!

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What I experience above is awful but I can put up with having a moon face (with a moustache), being overweight and exhausted in the knowledge that Dex is helping my treatment work and when I stop taking it these symptoms will eventually disappear.  In the meantime I can work on my vanity issues!

The Ugly

This is much harder to deal with.  The ugly happens more when I am withdrawing from dex especially in week 3 of my cycle.  My consultant wrote on the consent form that I signed before starting treatment that it caused “emotional lability”, the medical definition of which is “a condition of excessive emotional reactions and frequent mood changes”.

I guess that sums up my experience in a clinical way although my mood doesn’t alter much between low and high, more like low and really low. I am depressed, tired and shaky, mentally and physically,  I am easily irritated by myself and others, restless and edgy.  Nothing I do or say feels right but I don’t know  what would feel right.  I find it difficult to be with people because I feel socially inept and lacking in confidence.  My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected.  I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

I have to keep reminding myself that what I am experiencing is a purely chemical reaction in my body to the lack of the steroid it has become accustomed to and that once I stop taking it eventually I will return to my “normal” state of mind. Not sure what that is these days as this year so far has been full of emotional turbulence. Whatever it is, I look forward to finding out, who wants to be normal anyway!

“It may be normal, darling; but I’d rather be natural.”
― Truman CapoteBreakfast at Tiffany’s

 

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Butterfly On a Bush

A few days ago on a bright and breezy day I was pegging out washing on the line when I saw from behind one of my T shirts the most beautiful peacock butterfly land on the mauve flower head of a buddleia bush.  It was struggling to stay on the flower because of the gusts of wind blowing it around and it was flapping its wings to try and stabilise itself. I ran back into the house to get my camera and hoped it would still be there when I got back. It was and I managed to take a couple of shots of it.  It was clinging on resolutely, occasionally fluttering off unable to stay on but kept coming back to land.  The fragility of the butterfly’s situation reminded me of my own recently as I have been desperately holding on waiting for treatment to start, both emotionally and physically.

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Since my post the Myeloma Trilogy, I have completed my first cycle of treatment. The Onyx trial finally opened on 9 August, I was the first patient and my trial tests really were whisked off to a lab in Paris (which spookily was my fantasy involving Lizbeth Salander in the Myeloma Trilogy post) and I was so hoping to be randomised to the new drug, Carfilzomib but there was only a 50/50 chance.  Just my luck I got the old drug, Velcade, which I could have started off trial two months ago off trial before I starting feeling the ill effects of having active myeloma. I was devastated and inconsolable, the poor trial nurse who broke the news to me didn’t know what to say and then had to perform a bone marrow biopsy on me!  At this point in time, it wasn’t that I wanted the new drug because I thought it would be a more effective treatment, it was because I had waited all this time for the trial to open to the detriment of my health when I could have started the old drug off trial before that happened.

Oh well, I have become resigned to it now like many other things I have become resigned to over the course of my journey with Myeloma, the loss of control is probably one of the hardest issues to deal with. The second cycle starts tomorrow and I hope that after two cycles there will be a significant reduction in my kappa light chains. I have my treatment schedule now but plans seem impossible as it is unpredictable how I am going to feel or what I can do on a day to day basis. A holiday in Italy has been cancelled as well as a tennis holiday in Greece at the end of this month so I am feeling rather sorry for myself. My self pity has been deepened by the excrutiating shoulder and arm pain I have at the moment caused by a trapped nerve in my neck which may or may not be related to myeloma or the treatment. I will be having an MRI scan to see what is going on soon I hope.

However I have managed to do some more enjoyable things in between hospital visits and prior to my trapped nerve such as canoeing down the river wye with some friends from Kerne Bridge to Symonds Yat in a 3 person kayak which was lovely. Oh and did I mention that I managed to do the bike section in the Salford Triathlon two weeks ago?? It was hard going but I took it easy and let go of my natural competitive inclinations and “allowed” everyone else to overtake me. My team mates did brilliantly too and at the end I felt overwhelming relief, firstly because I had been able to do it and secondly because it was all over now and I didn’t have to stress about it anymore. Action photos below, the small one of me coming off the bridge I really like but I cant improve on the quality or size without buying it as it was taken by a commercial photographer. I certainly look the part, who would know that I was week one into chemotherapy treatment and that earlier that morning I had struggled to get up the stairs to the registration area for the triathlon due to my shortness of breath!

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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.

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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!

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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.

P1020558

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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