Tag Archives: light chains

The best laid plans……

“The best laid schemes o’ Mice an’ Men,
Gang aft agley.
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

(To A Mouse)”
― Robert Burns, The Works of Robert Burns

I was feeling quite elated following my last clinic appointment because after months of uncertainty about how long I would continue on treatment my consultant and I came up with a plan. The plan was to continue with this low dose treatment regime until around August, that would be 12 months since I started treatment, and then have my second stem cell transplant (which would be three years since my first one).  The reason being that I am tolerating it well with good quality of life.  I have learnt that spinning out something that is working for you for as long as possible is a good strategy when it comes to treating Myeloma. Living with Myeloma is a marathon not a sprint and as there isn’t a cure there is no hurry to get to the finish line. Come to think of it, there isn’t really a finish line. Of course the plan is subject to my light chains staying in normal range which they have been since November. If they started rising out of normal range then I would have the stem cell transplant as soon as possible.

So finally I had something to tell people, I had a plan, I could make plans, I could reach that bit further into the future, I could say yes to this or that invitation if it was before September. I started to lay tracks across my mental calendar for the next few months.  My mind was racing with delight. I would have a glorious summer. The next few months would be my myeloma salad days before the gruelling stem cell transplant process.

Then on Monday when I went to the Haematology Day Unit in for my weekly shot of  Velcade, I was given a print out of the most recent blood test result which was out of normal range and confirmed an upward trend over the last 3 tests. I felt instantly slumped, all my hopes and plans were shattered by an A4 sheet of paper. I have had many set backs and disappointments along this journey and this was another one (not even a particularly significant one) but for some reason it has hit me hard.

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Now the plan is to have another test on Monday and if that confirms the rise, I will be coming off treatment since we must assume that it is no longer holding me in remission. I will then have a stem cell transplant in the next 4 to 8 weeks.  If my light chains return to normal range then I suppose I am back on track but whatever the result I have already reigned in my plans. hopes and dreams. To avoid disappointment I can only plan around a month ahead at a time. I know plans can be cancelled or put on hold and perhaps it is better to make them than not but for me it was not necessarily the plans themselves that were the attraction but the freedom to be able to make them.

 

 

 

 

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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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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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The test that was right that was wrong that was right

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
―     Rainer Maria Rilke

monet garden

When I got back from Paris a week last Friday on the Eurostar trip with my parents to see Monet’s garden, amongst my post was an odd letter from the Haematology department saying my appointment with the consultant had been cancelled and that an appointment had been arranged for Friday 17th May instead at 12pm. By the time I got the letter it was too late to ring them to say I had only just got back so it had to wait until Monday. I didn’t really worry about it but rang on Monday and spoke to the appointment secretary and explained that I had been away and unable to attend. I asked why it had been brought forward and was told something like the doctor was trying to clear down his list for 31 May when my appointment had been scheduled for.  It was rearranged for 24 May.

I duly attended, expecting to discuss the erroneous test result (see my last posts, falling off the plateau  and back on the plateau ) and perhaps to have another discussion about what treatment I might have when I do relapse bearing in mind that my kappa light chains were only 117 mg/litre, there was no immediate concerns.  I had the last appointment and when I arrived clinic was extremely busy but as I was having Zometa  (a bone strengthening treatment) as well, I went to the day unit for my bloods to be taken and my kidney function tested as usual. I had Zometa at about 3pm and still hadn’t seen my consultant but as I was leaving the day unit I bumped into him and the haematology specialist nurse as they were coming to find me. Seeing the nurse there as well made me feel slightly anxious as she doesn’t normally sit in on my appointments. We went into his consulting room and he then told me that unfortunately the first test showing the massive rise in my light chains to 617 mg/litre was in fact correct and it was the retest that was wrong. I was completely stunned. He said that both tests had been retested several times and that it was confirmed. The lab were unable to give any explanation as to how they got the retest result so wrong.

My consultant said on that basis I was now relapsing and we needed to sort out a treatment plan pretty quickly. We discussed different options but my head was in a complete spin and I couldn’t really concentrate on what he was saying. I am to ring up in a few days time to find out the result of the light chain test taken on Friday and if my kappa light chains are over 1000, I have to make an urgent appointment to see my consultant and have my kidney function tested which is a big concern and possibly start treatment straight away. If they are less than 1000 I will see him on 14 June by which time a trial may be available which might be a good option for me. So unless by some bizarre chance my light chain test this time shows a massive reduction in my light chains, I will be starting treatment very soon and all my plans of doing the triathlon in August and a couple of holidays in September will be out of the window.

After the appointment, I was in shock and disbelief.  It felt a little surreal. I debated whether to go to a friend’s 60th birthday meal that evening but I did and it was fine but that night I couldn’t sleep and the following morning I was low and tearful and was thinking of putting off my friends visit to me for the weekend that thinking that my mood would be so low I wouldn’t want to see them.  I went to my outdoor fitness session in the local park hoping that it would raise my serotonin levels but it didn’t really have that effect, instead I was worrying about whether too much exercise would be stressing my body!

My friends arrived, it was a lovely day, I told them the bad news and by the afternoon my mood had completely lifted and I was dancing to salsa music round the kitchen and the garden whilst making dinner. I am still feeling okay, after all I am in no worse position than I was when I found out that my light chains had risen to 617 on 19 April. I adjusted to that after the initial shock and disappointment, then had the elation of finding out that test was supposedly wrong, had cocktails on my birthday with friends, went to London and then Paris in a celebratory mood ( I probably wouldn’t have gone if I had known my light chains were over 600). Monet’s garden was truly beautiful (aside from the drama of my mother falling over and breaking her wrist) and Paris was well Paris, the city of light!

It is a cliché, but life at the moment is truly like being on a roller coaster!

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In fact dealing with the emotional effects of having myeloma is far more challenging than the physical effects at least for me so far. It has truly been a mind blowing experience. How I can go from feeling so desperately low and alone on Saturday morning to happy and elated by late afternoon is just as strange as the recent sequence of test results.

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PS Back on the plateau!!

cats38    IMPORTANT NEWS RELEASE

The test result was false, an error!

The retest was kappa light chains….117mg/litre, more like it! The outside chance that the test was wrong I mentioned in my last post Falling off the plateau materialised.

Contrary to a myeloma friend of mine who thinks I don’t do short, that’s all I’ve got to say folks!

aballetline2

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Falling off the plateau

It seems that I have fallen off the plateau that I had made my temporary home for the last few months before the descent into relapse.   Just as I was settling in and adjusting to my new territory,  I have yet again been reined in by my rising kappa light chains which have jumped rather dramatically from 77 mg/litre to 617 mg/litre in the space of a month.

Plateau

I didn’t stay at plateau point very long but it was great whilst it lasted!

Needless to say I was as disappointed and surprised as my consultant who arranged for me to have a retest last week to see if the jump is for real or some kind of freaky fluke.  There is an outside chance at most that there could have been a massive error in the lab testing but I am not holding my breath and I am not praying for a miracle or some such thing.

I mentioned in a previous post (Hello Relapse Goodbye Remission Part 2 The Calm after the Storm) that my consultant said as long as my light chains weren’t above 600mg/litre I could go to India. I feel so fortunate that I was able to go before the steep rise to 617 this last month.

So the plateau was short, January to April, to be precise, but I had adapted to the new phase of my disease and the fact that I was no longer in remission fairly quickly, once over the initial shock of relapse.  I was hoping that this phase might last until September, which would be two years post stem cell transplant, a respectable period of time.  I became comfortable with the new normal for me and was off again planning and booking trips, playing matches for the ladies team at my tennis club and starting a 16 week training plan for the Salford Triathlon in August.  This was on the premise that I would not be on treatment and my light chains would remain in the bracket of around 70 to 90.

And now I am back to not knowing what I can do when.  I feel like I get slapped down by my disease whenever I start taking things for granted.  Logically I know that my myeloma isn’t capable of such vindictive behaviour, it doesn’t have a personality, being just some cancer cells doing their thing, so if I get into slapping them back we are entering into battleground territory and you will see from a previous post (Hello Relapse Goodbye Remission) that I am not battling my disease.  However I do feel a little like Humpty Dumpty at the moment, getting to the top of the wall, balancing there a while, happy, and then falling off except that hopefully as I am not an egg, I can be put back together again!

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I expect to be starting chemotherapy treatment soon after 20 months of being drug free since my stem cell transplant, apart from the monthly infusion of Zometa, a bone strengthening treatment. I am dreading it and my head is spinning with the various options that are on the cards. It is good that there are options, but options mean choices and I really don’t know how I am going to decide between them… but more of that another time!

This is likely to be my last post for some time with the blog subtitle “living in remission”.  Of course I am hoping to achieve remission or stable disease at some point in the future but I am conscious that the remission I have enjoyed may not be as long again. Unfortunately the law of diminishing returns usually applies to a second stem cell transplant if that is what I decide to have so that I may only get one half to two thirds of my first remission.

Whilst the past 20 months have not been easy, they have generally been good. I have been able to live life well with no health issues and no pain unlike some with Myeloma. I want to appreciate and celebrate what I have done whilst being at the top of the mountain so to speak since from my stem cell transplant on 1 September 2011 and then latterly on the plateau.  In more or less chronological order some of the highlights are:-

  • cycling along the Monsal trail in the Peak District one fine autumnal day
  • long weekends in London, Dublin and Alicante
  •  starting my blog
  • a holiday to Tenerife
  • seeing the Northern Lights and going dog sledding in Sweden
  • playing the piano again
  • a stay in Palma, Majorca
  • running the Manchester 10k
  •  a holiday to Lake Maggiore and Switzerland
  • a trip to Oxfordshire and Somerset
  • joining an outdoor fitness class
  • giving a patient experience talk at Myeloma UK info day
  • a tennis holiday in Corfu
  • a trip to Tromso, Norway to see the northern lights and go dog sledding (P)
  • seeing a wild tiger whilst on holiday in India (P)
  • playing (albeit badly )in a tennis tournament (P)
  • training for a triathlon (P) (R)
  • finally and hopefully going to Paris on Eurostar, to see Monet’s garden at Givernay (R)

Those marked P indicate done whilst plateauing

Those marked R indicate doing whilst relapsed!

Thanks to everyone that I shared some of these things with and those that supported me and encouraged me to do them.

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Hello Relapse Goodbye Remission Part 2 The calm after the storm

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Since I last posted a month ago with the dramatic news of my relapse in a rather angry and stormy moment, I feel so much calmer about relapsing. The storm has passed, and in its wake is a sense of rebuilding and adaptation to my new situation. I have seemingly made the transition to my impending relapse with resigned acceptance pretty much as I said I would do in my last post.  I don’t feel angry with anyone or anything anymore. In fact I have bounced back fairly quickly. Having recovered from a lingering cold and cough, I feel very fit and well and even happy.  After the initial shock and despair I have felt a strange mixture of apprehension and excitement about this new phase of my disease. I can only liken the feeling to starting school or a job or something new for the first time.

I may have been slightly distracted by my lovely holiday in Tromso, Norway, I managed to see the northern lights, went dog sledding and packed in a whole host of other winter activities too in spite of feeling below par with my cold!  The photos on this post were taken on my holiday for no particular reason other than they are lovely! I find the landscape and its muted colours very calming. I think I look calm and happy too!

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This holiday was also good for my confidence in terms of it being ok for me to go to India even though I am relapsing.  I feel reassured by my haematology consultant that nothing untoward will happen to me in India apart from a probable dose of the “squits” (his words), in which case I should drink plenty of water! In fact the couple of meetings I have had with my consultant have been very reassuring in terms of timescale and now being more regularly monitored.

The term used by my haematology specialist nurse to describe my situation is “relapsing” meaning I am no longer in remission as my kappa light chains aren’t in normal range but neither have I relapsed as I don’t need any treatment because my myeloma is not active or going to do any damage at the current levels and can go quite a lot higher before they do.

My kappa light chains have gone from 19.4mg/litre in October 2012 (just inside normal range which is 3.3 to 19.4) to 39 mg/litre in December, to 77. 5 on 9 January 2013 to 69.2 on 25 January to 89 on 15 February, my last test. My consultant has set a ceiling of 600 mg/litre for me to go to India and when they reach that level or I start feeling unwell such as anaemic, tired or bone pain I will need to start treatment. To put it in perspective, my kappa light chains were probably around 10,000 when I was first diagnosed and the amount of free light chains circulating in my body were being deposited in my kidney which couldn’t process them and caused my acute kidney failure which eventually led to the diagnosis of multiple myeloma.

The best case scenario is that I plateau around the level that they are now which whilst not normal is not causing any harm to me and so doesn’t need treatment, akin to those with smouldering myeloma or MGUS. It is a watch and wait scenario which could go on for months or even years but I think months is more realistic and years more hopeful as I have full blown myeloma.

The worse case scenario hasn’t actually happened but would have been continued steep rises in my kappa light chains from one test to the next so requiring treatment almost straightaway. I have discussed possible treatment options with my consultant for when the time comes as we need to start having those conversations sooner rather than later to be prepared. He has talked about having a further autologous stem cell transplant followed within 6 months by a “mini allo” (when the stem cells come from a donor).  This procedure was recommended to me after my transplant but I couldn’t have it because there was no suitably matched donor. Well the search has been reactivated and there is a potential 9/10 match available this time but further tests would be need to be carried out to determine the donor’s suitably. It was scary enough contemplating it last time so I don’t want to think too far ahead about that right now.  I am not ready to step back on the rollercoaster yet.  It is and always has been one day at a time since diagnosis and that is the way it has to be, but this mantra doesn’t mean I live each day as if it is my last or I feel under pressure to make the most of each day and party like there is no tomorrow.  However I am aware that this period of relapsing however long it lasts is precious whilst my health is good and I am not treatment.

So here is what I am not doing or being:-

  1. I am not being positive but I’m not being negative
  2. I am not praying as I am not religious
  3. I am not doing any affirmations or visualisations
  4. I am not going into battle with my cancer cells
  5. I am not going to worry
  6. I am not going to get my affairs in order yet
  7. I am not giving up cake!

And so I don’t sound too negative, here is what I am doing or being

  1. I am training and hoping to enter a triathlon in June/July whilst I am fit and able to (that involves 2 x swim,run and bike each week)
  2. I am getting on with my life and having fun
  3. I am going to India in one week’s time for what will be hopefully an amazing holiday
  4. Through some great online resources and contacts, I am learning as much as I can about my disease and what chemical and/or natural agents may be able to control it so I can do as much as I can to facilitate my survival and quality of life (nb this is not battling!)
  5.  I am as always trying to live in the present

नमस्ते

namastē or ha det bra!

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Hello relapse, goodbye remission

The inevitable has happened, I am relapsing.  I knew it would happen but had hoped it wouldnt be so soon.  After I posted last month the good news that my hip pain wasn’t caused by myeloma (see my last post The Nightmare before Christmas) the bad news this month was that it is coming back. I wish my life wasn’t quite such a rollercoaster. I won’t bore you with the technical details, suffice to say that I have had 3 successive rises in my kappa light chains which have doubled each time and are now considerably out of normal range but not perhaps high enough to start treatment yet, all else being well. And that is the irony, I am feeling really well.

Being so well and strong this past year I had dared to hope for a long remission, maybe 5 years plus, I had already booked three holidays for this year (unusually for me as I always used to leave this to the last minute), started training for a triathlon in June, had a work plan for the future and hopes of perhaps finding a partner too, thinking that my life would be long and healthy enough for all that to happen. I was almost complacent about my remission.  I thought I was invincible. How the mighty have fallen! Now the future seems as bleak as it did when I was diagnosed in December 2010.

I have talked the talk in my blog about living in the moment and banged on about the merits of living day to day but now I can only see a gloomy future, a life on treatment until the options run out and myeloma becomes resistant to the drugs. I am categorising myself as one of the unlucky ones, reading grim statistics about survival rates after relapse. I am unlikely to get a donor match to have an allogeneic transplant, see more on this in a previous post (Clinic appointment on Friday the 13th )  which relates in part to the Anthony Nolan Trust and my search for a donor last time around.

And oddly enough I feel anger too, not an emotion I am usually inclined to, being of a fairly calm and cool disposition. I feel non directed anger about how my life has panned out, , the unfairness of it all, anger with myself for not always making the right choices, anger with the NHS for not funding Revlimid maintenance therapy which might have doubled my remission, anger with my haematology medical team for not supporting me enough and angry that I have to live like this, with uncertainty, illness and death.

I also confess to feeling envy, yes envy of my fit and healthy peers planning their gentle third age, envy of people who are just getting on with their lives, envy of people out walking their dog in the park, happy families, joggers, couch potatoes…. the list is endless, in other words, NORMAL PEOPLE who don’t have to live with a life limiting illness. I’m not saying that they are “normal” or that I cant do the things that normal people do, (except plan for old age and worry about pensions which is actually quite liberating!), I’m saying that I always carry with me that consciousness of my own mortality, it is ever present, even permeating my unconscious mind now (in a lot of my dreams I have cancer). I no longer have the luxury of being able to take things for granted even though that is not necessarily a good way to live, just now and then it would be nice.

I even feel jealous of fellow myeloma sufferers who are enjoying longer remissions than I had. How awful is that? I mean I wish them well and a very long remission of course but I just wish I was one of them.

I have told a few friends and family, they don’t know what to say.  A common response is can you do anything to stop it coming back…. what like eating more fruit and vegetables, drinking green tea or taking a vitamin supplement??? Are they kidding, it’s cancer for fucks sake! It comes back of its own accord regardless of my lifestyle choices. If anything I should have plenty of brownie points stored up for the active and healthy lifestyle (apart from the odd cake and mojito now and again!) I have led in remission and prior to diagnosis. It makes not one jot of difference with myeloma. I could have slobbed out, smoked, drank and eaten fry ups everyday and still be where I am now. In fact it strikes me from the various forums I am on just how many people prior to diagnosis seem to be fit, health conscious and active people. As one friend said to me when I was diagnosed, we all try to live a healthy lifestyle, don’t smoke or drink too much and the shit happens anyway so why bother!

That brings me on to the subject of fighting talk, the people who would say ok its happened but you’re a fighter right? You’re going to fight this, beat it and win, yes? Well actually I am not going into battle with abnormal plasma cells in my bone marrow, I’m not going to obliterate my excess of Kappa Light chains (sounds like Star Wars!). When the time comes for treatment again, the chemotherapy will create a chemical reaction that I don’t understand (and that my doctors understand hopefully some more of than I do, that being their job) that may help on a temporary basis to stop the abnormal cells from producing, that’s it, that’s all there is to it. It is not a contest, a battle of endurance like Andy Murray v Roger Federer, smashing the cancer like a ball over the net, giving it my all. Cancer cells exist in my body whether I fight them or not. As a fellow myeloma blogger put it very well in his recent excellent post on the certainty of uncertainty…

“Disease biology is destiny. I am no match for the pathology of cancer. Nor should I expect to be. It is going to do what it is going to do.”

(pmdello- goodblood,badblood)

http://goodbloodbadblood.wordpress.com/2013/01/21/the-certainty-of-uncertainty/

I cant beat my abnormal cells into submission and dont want to feel beaten by cancer now it is returning, like it is my fault for not putting up a good fight or not living the right way or come to think of it, another bugbear of mine, not being POSITIVE enough.

I have been told “you have got to stay positive”. Why, because that makes no difference either. I remember not long after diagnosis when I was in a very big black hole, I read a cancer supplement in the Times that had an article on whether there is a link between positive thinking and survival prospects in cancer patients. I didn’t keep the supplement unfortunately and now I cant find the link but there are plenty of studies out there which show that being positive has no effect on cancer and neither did being stressed or depressed mean a worse outcome. I was immensely relieved to read that at the time and still find it reassuring. Whilst being positive may make it easier to deal with the diagnosis and the treatment and certainly makes life easier for your medical team than a tearful and anxious patient as I was, it doesn’t affect the outcome.

For anyone interested in the pitfalls and politics of positive thinking, I recommend a book called Smile or Die by Barbara Ehrenreich, an American political writer and activist.

For Amber @ The Daily Mail smile-or-die

Cancer is not a problem or an illness – it’s a gift. Or so Barbara Ehrenreich was told repeatedly after her diagnosis. But the positive thinkers are wrong, she says: sugar-coating illnesses can exact a dreadful cost. She was told when diagnosed with breast cancer that having a positive attitude would help. That was like waving a red flag to a bull and she and others have thankfully debunked the myth of positive thinking.

Thank god I don’t have feel positive and maintain an upbeat demeanour or practice daily visualisation exercises of my good cells killing my bad nasty cells!

I am sorry if I have offended anyone with my anti positive talk, if it works for you then that is great. I also apologise for my rant. I won’t always feel this way, I just need time to get my head round it and to adjust. In fact I am already feeling more accepting and fatalistic. As my favourite fictional mobster and anti hero Tony Soprano often said…, rolling his eyes and shrugging his shoulders.

Whattaya gonna do?
Tony_soprano.jpg-3269<

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Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Remission, Stem cell transplant

The Nightmare Before Christmas

Nightmare_Before_Christmas_by_Perry666[1]

I’m not keen on this time of year, approaching Christmas, things seem to have a habit of going wrong for me, especially 2 years ago.

On 14 December 2010 at around 11.30pm I was admitted via A&E to the renal ward of Manchester Royal Infirmary with acute kidney failure. I had not been well for a week or too, and had to cancel flights booked to India departing on December 15th on my GP’s advice due to a urine infection. I was suffering with nausea, breathlessness, fatigue and general weakness but went into work in the morning as usual. I sat at my desk but was unable to concentrate on anything, my secretary noticed, had a word with the office manager and I was sent home. When I got home I went to bed, it was a cold winter’s day, it might have been snowing. I was sleeping when my doctor rang late in the afternoon to tell me that my recent blood tests showed that my kidney function had deteriotated to 10 to 15% of what it should be in the last 7 days between blood tests and that I should go to A&E straightaway. I asked him would I be there long, ridiculous question really!! He said I should pack a bag.

My partner at the time helped me pack a bag and both of us in shock, we set off first to the GP surgery to pick up a letter with the blood tests and my notes. Then to the hospital about 3 miles away. I remember clearly that it was snowing, the roads were covered in snow and the driving conditions, slow and difficult. That was the wintry beginning of my journey into unknown territory.

I was eventually admitted and then as those of you will know from reading this blog was diagnosed with Multiple Myeloma on I think 23 December. I was discharged on Christmas Eve, relieved to be out but hardly in the mood for celebrating. Even so there were some poignant and happy moments.

DSC01196

That was the start of my new life. There was before and there was after and even though my life now in many respects has the outward appearance of my life before it just isnt. I am not saying it is worse, it is different and sometimes better. I also need to throw into the mix that shortly after diagnosis I split up with my partner of nearly 20 years standing so the before and after is very much interwoven with that traumatic event. In my mind that has been emotionally tougher than the cancer diagnosis to deal with. The loneliness of my journey has been acute at times and though I never really needed a “carer” for any physical needs, I have really missed and still do, having someone to share my journey with, the good and the bad.

The next few months of treatment combined with my relationship ending were the toughest times I have ever been through but get through it I did.

“At the end of the day, we can endure much more than we think we can”

Frida Kahlo

kahlo painting

So last year at this time, nothing dramatic went wrong and I was recovering from my stem cell transplant. I had a bone marrow biopsy in early December and I was told that it was less than 5% abnormal plasma cells so that was good news, I was officially in remission! However the news was tempered with the not so good news that I had chromosomal abnormalities that could mean a poorer outcome and shorter remission so a donor transplant was being recommended within 6 months. Having agonised over whether to have a second donor transplant and deciding to have one, I was told that a donor couldnt be found when the search was initiated.

For more on the donor transplant read my post “clinic appointment on Friday 13th”

https://wendyduffield.wordpress.com/2012/04/06/clinic-appoint…on-friday-13th/

And this year, what could go wrong, well lots could go wrong, I’ve been having some strange hip pain which I thought could be bone pain caused by myeloma coming back but it turned out not to be much to my relief.

However there is just one tiny little thing …………..!

I had booked a holiday to India, going in March 2013, similar to the one that I had to cancel 2 years ago so I was looking forward to it but yesterday I was contacted by the tour company to say that as I was the only one on it, it had been cancelled. Strange coincidence but completely different circumstances and as I cant cancel the flights I will just look for another holiday so its not a big deal.

So no nightmares before Christmas this year and nothing hanging over me so I intend to enjoy the time with my family, two years on from diagnosis. Another milestone on my journey. It is something of a dichotomy as I am impatient to reach the milestones because they mark more and more time in remission but on the other hand I want the time to go slowly so that I can appreciate it more! I need to have in mind that..

“Life isn’t a matter of milestones, but of moments.”

― Rose Kennedy

Seasons Greetings to all

 

 

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Filed under Cancer, Health, Multiple Myeloma, Myeloma, Remission, Stem cell transplant

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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Filed under Cancer, Health, Multiple Myeloma, Myeloma