Tag Archives: carfilzomib

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!

wendy canoe  SALF4328 P1020608 (2)

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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.

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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Trials and Tribulations

Life is rather strange at the moment. I have relapsed but I am not on any treatment. I am quite well physically yet my kappa light chains were approaching 2000mg/litre at the last test on 21 June.  Another sharp rise then by about 850mg, I wish I was IT adequate so I could put graphs on my blog posts. Normal is up to 19mg per litre. However much as I might like to be normal, I am not!  I am adjusting to these figures each time and they now really mean very little.  I found myself saying to a friend who also has myeloma ” they’re only 2000″!! I remember when I first found out I was relapsing I was devastated that they had risen over 100 but at that point I was dealing with the trauma of relapse. Now I have got used to the fact that I have relapsed, that the light chains are not going to go back down of their own accord and I need to start treatment at some point probably quite soon.

I have the same physical well being as I did when I was properly in remission and my light chains were in normal range.  I am told that my relapse is biochemical rather than clinical as I have normal range blood results and kidney function and am showing no signs of bone damage ie pain! Therefore the only way it is detected is by the free light chain test of my blood serum. The last few weeks since my stay in hospital with a high temperature (see my last post, A Room with a View )  I have  seen my own consultant twice and went to St James Hospital in Leeds for a second opinion from Professor Gordon Cook which was extremely helpful. The purpose of the second opinion was to discuss treatment strategies, both immediate and long term.  We have discussed trials. One excellent trial c0-ordinated by Myeloma UK has been ruled out (the MUK5 trial) as my exit strategy isn’t compatible with the trial objectives. However another very similar trial aptly called the Endeavor Trial looks suitable for me as it compares a new drug which is not available off trial (Carfilzomib) against an older version of a similar drug (Bortezomib). There is a 50/50 chance of getting the new drug but it is not open at the Manchester Royal Infirmary yet. I keep being told shortly or two to three weeks but that has turned into a few months now as the trial sponsors seem to be prevaricating. Which is why I am waiting and waiting and waiting.

To hold the myeloma at bay, I was given a 4 day course of high dose dexamethasone  a couple of weeks ago ( a steroid commonly used as part of treatment of myeloma). I experienced a very bad reaction to dexamethasone whilst on treatment before. During the  days of the cycle I took it  I suffered from insomnia, carb/junk food cravings and shakiness.  The plus side is energy surges. Long term use resulted in  blurred vision, muscle wasting, heavy aching legs and tinnitus. During the intervals I wasn’t taking it I suffered withdrawal symptoms such as irritability, severe low mood and lack of concentration. I thought that as the recent dose was just a one off 4 day course,  I wouldn’t get these effects but guess what I did!  Not the long term ones but the short term ones. The good part of it was having energy for a works night out and drinking rather too many mojitos, then going to a friend’s house gathering that lovely first weekend of the start of summer in the Cotswolds and being able to do some rather energetic disco dancing for quite a long time! No photos of that I am afraid.

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The downside was that for 2 to 3 days after taking the course I felt extremely low and irritable to the point where I had decided that I wasn’t going to take any treatment for my relapse if it was going to make me feel like this and I would rather let my disease take its course! I can find that laughable now but I really did feel like that at the time. It doesn’t bode well for the commencement of the suggested 6 to 8 cycles of treatment which will include dexamethasone and one of the drugs mentioned above. Will I be able to tolerate it both mentally and physically?

But whilst I am waiting to start treatment either on a trial or off trial, I feel like I inhabit two alternate worlds at the moment

The Normal World

Where myeloma is not mentioned. Work is extremely demanding right now as I am busy dealing with another kind of fast approaching trial, the highest value  claim and most interesting case I have ever handled. I want to see it through to conclusion.  I am making arrangements for conferences, meetings and court hearings to take place over the next few weeks without knowing whether I’ll be able to attend them. I am continuing with all my other usual activities including training for the Salford Triathlon on the 18th August which involves 6 training sessions a week. More about the triathlon in a post to follow soon but if you want to sponsor me or find out more just click on the just giving link on my blog.  Then there is of course much to enjoy about this glorious spell of  Mediterranean  style weather we are experiencing in the UK at the moment.

The Myeloma World

In this world I am a relapsed cancer patient not yet on treatment, being clinically managed by Haematologists, with very little control over what happens. Spending a lot of time thinking and talking about my chromosome abnormalities, clinical trials, drugs, treatment combinations, stem cell transplants, kidney function, kappa light chains, treatment strategies and having endless blood tests. This world consists of mostly waiting for results and at the moment a trial to open and uncertainty. Different friends came with me to my last two appointments and both were amazed by the level of knowledge I had about myeloma and the treatment of it. When I start treatment this will mostly become my world again.

Which World?

Well I don’t have much choice. I know I have to start treatment and once I start it I will have a routine and some say feel better mentally for it.  The anxiety caused by waiting and worrying that I am going to get kidney failure, bone damage or a serious infection would be replaced by the anxiety  that I will no doubt feel about coping the side effects of the treatment and whether it will work but I am already feeling anxious about that now so I suppose starting treatment removes one layer of anxiety!.

On the other hand, I oscillate between wanting to get treatment underway and wanting to delay it further whilst I am feeling so well so I could enjoy the rest of the summer and do the triathlon and perhaps even approach the 2 year anniversary of my stem cell transplant on 1st September free of treatment? I guess the decision is out of my hands. To use my currently much overused phrase “I’ll keep you posted”

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”
―     Gilda Radner

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