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.
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.
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