Tag Archives: living with uncertainty

Ain’t nothing but bad news

I started this post over a month ago but have never been well enough to finish it before something else happens that I want to write about so I am continually playing catch up or editing the post. Rather than completely revamp this one I just want to get it out there and hopefully do a further post quite quickly this time.

It seems as if the holy grail that is remission is slipping beyond my reach unfortunately. I ended my last post, Baby steps to Day 100 on a bit of a cliff hanger as I was awaiting my bone marrow biopsy results. The results were that I had 5 to 10% abnormal plasma cells in my bone marrow. The doctor that gave me the results seemed to think this was good until I pointed out that it was the same result as before the transplant. He then described my disease as stable and said the transplant was probably working and it was early days and I was still on immune suppressant drugs blah blah blah.

I was very gloomy but slightly cheered by the light chain results which showed a reduction from 44 to 29 the second downward result. Not normal range which is up to 19 but not far away. At least that was some good news……until I got the next result a couple of weeks later which was they had shot up to 99 and then the next results two weeks later that they had increased again to 147.  It looks to me like my transplant has failed but my medical team are not using the R word yet.  The boss’s plan is to get me off the immunosuppressant drugs that I have been on before and since the transplant as soon as possible. I am just on cyclosporine now.

Immunosuppressants (anti-rejection drugs), are intended to suppress the function of the donor’s immune system for a long time after the transplant to help reduce graft versus host disease and the risk of graft rejection. I probably would have been tapering down earlier had I not had acute skin GVHD and been on steroids for 4 months. The hope is that as I gradually come off the immunosuppressants I will get some GVHD and also some graft versus disease effect. If that doesn’t work over the next two or three months and my light chains continue to rise quite then I will have to start chemotherapy treatment. Not even 6 months from my transplant and the possibility of being back on treatment looms.

Even though I no longer count the number of relapses any more as I’ve not actually been in remission for sometime now, this news comes with huge disappointment after all I have been through with the transplant and continue to go through.  I’ve not told many people about my latest light chain results as I can’t bear the weight of their disappointment resounding my own. I would like to be able to convey some good news but there seems to have been little of that since my last post especially in the last couple of months.

On a better note, prior to finding out my light chain results, I had enjoyable weekends away visiting friends in Otley and Nottingham and family in Whitley Bay. I felt I was getting stronger and whilst in Nottingham managed a longish walk in Lambley through fields of ripe golden wheat just ready for harvesting on a lovely sunny day with huge puffy cumulus clouds floating around the big blue sky. And the next day,  a gentle cycle ride around Attenborough Nature Reserve alongside the languid river Trent. The first time back in the saddle for quite some time, it has given me the confidence to want to do more. I was feeling good. Now I really need to hold on to that feeling.

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Then a week or so later I got sick and all those good feelings combined with the news of the rise in light chains set off my anxieties and fears. I started getting temperature spikes every evening and some sort of urinary tract problem which was immensely painful. I was given broad spectrum antibiotics and numerous tests were carried out but the actual type of infection or infections could not be identified which is quite common other than that I had adenovirus ( a common respiratory infection with cough and cold like symptoms but which can be life threatening in post allo patients) yet again. I was told to call the out of hours helpline if my temperature went to 38″ or above. I knew if it did I would end up having to go to A&E and so every evening became a tense game of waiting and watching. The recent loss of yet another friend with Myeloma to sudden pneumonia after his second stem cell transplant played on my mind as did the fact that the last time I had temperature spikes like this was after I relapsed the first time and myeloma was becoming active again. Fortunately I have not had the temperature spikes for the last few weeks and the urinary problem has gone.

I am so bored and tired of it all, there seems to be no end point in sight other than the most feared one. I’m bored of telling everyone my bad results, bored of having infections and being tired all the time and no doubt everyone is bored of hearing about it. People move on with their lives and their daily business  and I feel like I am stuck in a no man’s land with no way out.

When someone asks how are you, how I answer depends on who is asking, the doctors and transplant nurses want to know the gory details of my bodily functions, fine, they like detail and need to know, but when I say I am really tired or my legs ache all the time, they don’t have an answer.  When family and friends ask, I feel it sometimes crosses too many boundaries to go into detail and there are many responses I could give and sometimes I just don’t know how I am. I am told by my medical team that I am doing really well but it certainly doesn’t feel like that. I think my best and most honest answer at the moment is I’m surviving.

“Does anything in nature despair except man? An animal with a foot caught in a trap does not seem to despair. It is too busy trying to survive. It is all closed in, to a kind of still, intense waiting. Is this a key? Keep busy with survival. Imitate the trees. Learn to lose in order to recover, and remember that nothing stays the same for long, not even pain, psychic pain. Sit it out. Let it all pass. Let it go.”

― May Sarton, Journal of a Solitude

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And finally, my second stem cell transplant….

My second autologous stem cell transplant happened at last on Friday 7 November. This procedure has been looming like a pirate ship bobbing up and down on the horizon since my light chains started increasing in January 2013. It was there in the distance but I suppose it was only when Velcade stopped working in around July this year that the pirate ship came closer to shore. It was cancelled in September because my bone marrow biopsy showed the presence of around 10 to 15% abnormal cells so I had one round of VDR Pace which I described in my last post. It was re-scheduled for 12 November, about three weeks after the VDR Pace finished but was brought forward when it was found out that my light chains hadn’t gone down after the VDR Pace but had in fact gone up a bit, much to my disappointment.  The aim was to admit me on 3 November but then as there was no bed available I ended up having the chemotherapy as an outpatient on Thursday 6th November and was treated as an outpatient for the first 5 days. I found the chopping and changing about very frustrating but somehow seemed to remain fairly calm about it, accepting that there wasn’t much I could do that would have any effect on the situation.

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Anyway I’ve had “it” now and am day 44 post transplant so long is it since my last post! As I didn’t start my blog until after my first transplant, I want to explain in a bit more hopefully non technical detail about what is involved. To call it a transplant is slightly misleading as really it is a massive dose of a chemotherapy agent called Melphalan which is a form of mustard gas coincidentally. I had this on what is called “Day – 1” as an outpatient. It was administered as an infusion over 20 minutes or so into my PICC line but prior to this and afterwards I was given lots of fluids through a drip as well. I started around 2pm and was finished by 9pm. I was tired but otherwise ok.

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The selfie is of me having the Melphalan whilst sucking an ice lolly. It is thought that sucking ice so the mouth is numb whilst you are having the chemo can help avoid reduce or avoid mucositis (a sore ulcerated month caused by chemotherapy). I had about 5 ice lollys and don’t want another ice lolly in my life again! I compared VDR Pace as being equivalent to a Zombie Cocktail in my last post because it is a mixture of a number of different cytotoxic agents. I would say Melphalan is the equivalent  of absinthe, the strongest alcohol that can be legally bought. The dose administered was enough to destroy my bone marrow so it can’t make any blood cells and I would die!

This is where the transplant part comes into play. Stem cells to the rescue! The day after the melphalan, called Day Zero, I was given back my own stem cells via an infusion over about 10 to 15 minutes, no big deal and certainly not an operation as some people understandably think I had. My stem cells were collected in July 2011 prior to my first transplant via my peripheral bloodstream. There was enough for 3 or more transplants collected and the cells have been stored at some ridiculously low temperature.  The newly transplanted cells are there to replace my body’s source of blood cells after the bone marrow and its stem cells are destroyed by the melphalan.  More like a rescue operation assisted by daily injections which promote the growth of white blood cells given around day 7.  Waiting for the new stem cells to engraft is the worst phase of the procedure and I was neutropenic, meaning I had no white blood cells or neutrophils which are the cells that fight infection.

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In the photo above kindly taken by the lab technician that brought the stem cells over to the ward, the bag of reddish coloured fluid is my stem cells, they went in over about 10 to 15 mins, no big deal. I felt fine. Afterwards I went to the cinema! I was told to come back for a planned admission 4 days later. Over the weekend I felt reasonably ok with my parents staying to keep an eye on me, but by Tuesday, Day 4, I was feeling quite weak and nauseous and was ready to go into hospital. I then spent the next 9 nights in hospital in an isolation room whilst my neutrophils went to zero and was allowed home on Day 13 when they had risen above 1. I got off fairly lightly as some people are in hospital for 3 to 4 weeks.

The incarceration was unpleasant but bearable and actually the time passed reasonably quickly. I watched a lot of TV, listened to the radio, went online and managed some light reading in between trying to sleep and spending time on the phone! I had a few visitors too. I was lucky enough not to get any infections. Coming out was great but in some ways felt scary because the recovery process was only just beginning and I was on my own now without the medical attention and care that I had in hospital. I didn’t miss the constant stream of staff coming into my room though!

The chart below is a really good description of the different phases to the stem cell transplant for those of you who don’t know. At Day 44 I am now in phase 4 or early convalescence. I have had nothing but a common cold in terms of infection which is still the greatest risk I face and my energy levels are returning with me able to do more and rest less as time goes on and my blood counts gradually return to normal.

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What the medics don’t really talk about is the emotional effect of having a stem cell transplant. It is quite common to feel depressed as I did after my first stem cell transplant. After diagnosis, the whole emphasis of the treatment was focused on undergoing a stem cell transplant so everything that happens is a build up to that point. After it happened, it was like now what? I had a sense of anti climax combined with physical weakness. I felt abandoned by my medical team as appointments become less frequent and suffered a loss of confidence which took a while to come back. On top of that I suffered from anxiety about when my myeloma would come back as it does.

But so far after my second transplant I don’t feel depressed, maybe because I know, having experienced relapse,  that this is not the end goal, the holy grail that I was hoping for the first time around and I have less expectations about remission and my light chains being in normal range. I’d like to think that maybe I have learnt the importance of living in the present. I have made a substantial recovery much more quickly than the first time around as well and have already realised that I don’t want to defer doing things until after I have recovered if I feel well enough to do them now. Although I am aware that I need to be careful not to overdo it, avoid crowded places, follow a clean diet, blah,blah blah!

This was going to be a fairly jubilant post about how well I feel so soon after the transplant but it is tempered by the fact that I found out recently that a friend with myeloma died a few months ago whilst having his second stem cell transplant in hospital. He had a wealth of knowledge about myeloma which he was happy to share with me along with a mutual love of tennis.  Another online friend with whom I was in regular contact died shortly after her second stem cell transplant, her body just couldn’t take anymore. She was an artist, photographer and a teacher. A third online friend and fellow blogger who relapsed around the same time as me also died a couple of months ago. They were of a similar age to me and were diagnosed around the same time. This is the sad reality of our situation, I hang out with people for whom death is circling around, not knowing when it will close in, until it does we must try to live with death and to live as well as we can. I am not just talking about people like myself living with a substantial life shortening illness although we have a greater sense of awareness of our own mortality, I am talking about all of us.

So farewell Martin, Eva and Carole.

“While I thought that I was learning how to live, I have been learning how to die”. ~Leonardo Da Vinci

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The end of an era

I am sitting tentatively in front of my lap top opened at my blog not knowing quite where to start with a new post.   Much has happened since my last post that if I don’t make a start, my blog will be as adrift as I am!  So as in the lyrics of Do Re Mi from the Sound of Music:-

“Let’s start at the very beginning
A very good place to start”

The beginning for me is my last post, The Party’s Over.  To recap, I had just started a new more intensive treatment regime called PAD to try and reduce my light chains before having a second autologous stem cell transplant. That treatment finished on 31 August and a stem cell transplant was scheduled for 10th September.  I had pre transplant tests such as a blood tests, swabs for infection, ECG, lung function test and 24 hour urine collection (my favourite!) on 26 August and signed the consent forms. A bone marrow biopsy was arranged for the 2nd September. A couple of days after the tests, the hospital rang to say I had an infection, Parainfluenza 3 virus which had started to manifest itself that day with a sore throat and runny nose which I thought was probably just a cold.  A drug to prevent the virus from multiplying (Ritavarin) and preventative antibiotics were prescribed and for the first week I really was quite poorly.

This coincided with my last day at work on 27 August 2014.  I made the huge decision to stop working a couple of months prior having been considering it for some time. I have been fortunate to be well enough to work since my diagnosis, with a couple of months off initially and some further time off to recover from my first transplant.  My employer has been supportive enough to accommodate my time off for treatment and allow me to work flexible hours. Working has given me a decent income as well as a routine and structure to my life which is outside of the world of cancer. A connection to the “normal world”.  What it hasn’t given me, especially since relapse, is much job satisfaction, as I couldn’t manage a case load anymore for operational reasons and was assisting other colleagues with their work. There was an understanding with my employer that when I was in remission again I would have my own caseload.  However I came to realise that wouldn’t be possible because there would always be uncertainty about how long I would be in remission.  There would be periods of remission and periods of treatment or even periods of remission whilst on treatment and/or periods of no treatment or remission. It’s complicated!  I would always be struggling about whether to drag myself into work when feeling lousy, not to mention being exposed in the open plan air conditioned offices to infections. Not being a productive employee was also affecting my self esteem.

I always had in mind that I would give up work after my second transplant to spend my time doing other things or even nothing, but as that transplant has been shelved for so long whilst in remission from low dose Velcade, it dawned on me that I didn’t know if and when I would get to that point and the time was now, Carpe Diem, as they say!

“Happiness, not in another place but this place…not for another hour, but this hour.”
― Walt Whitman

I want to do things that I enjoy even though I am not sure what those things might be! Some cautioned me that I shouldn’t shut doors that didn’t need to be shut and that work gave a purpose to life other than living with myeloma. Others were concerned about whether I would be able to afford to stop working. The former rather than the latter concerned me more but I decided that working to give purpose to life was a rather conventional view of what may constitute a purpose and there were other things I could do to give meaning to my life.  Although I don’t discount the value of work as a link to the normal world, it has become increasingly difficult to be part of that. As for purpose, what does that mean? I love the quote below:-

“Cat: Where are you going?
Alice: Which way should I go?
Cat: That depends on where you are going.
Alice: I don’t know.
Cat: Then it doesn’t matter which way you go.”
― Lewis Carroll, Alice in Wonderland

I had a break from writing this post to do some work in the garden. Sometimes I go into the garden purposively to do a specific job whether it be pruning a bush, weeding a border etc. Sometimes I go as on this occasion not knowing what I will do until I do it. I cut down some dead flower stems and tidied up a border so was this my purpose without me consciously realising it? Does there have to be a purpose or as Cat says “then it doesn’t matter which way you go”.  There you are, philosophy in action!

My last day at work was quite emotional, marking the end of over 20 years of being a solicitor, and the end of that part of my life and connection with that world.  Now I just want to be! I didn’t particularly want to celebrate what was being called my  “retirement on ill health grounds”. I would not have been able to chose to give up work at the age of 53 if I didn’t have myeloma as I would like everyone else be waiting until my pension pot was big enough for me to retire. Now I don’t care about that! The next day I started feeling poorly with para influenza virus and was quite concerned as to whether I would be able to go on the trip to Verona that was planned for 4 September. I had my bone marrow biopsy on 2 September and discussed whether I was fit enough to go, coincidentally with an Italian doctor from Turin. He said I should see how I felt and that hopefully the drugs would work to contain the virus. I did turn a bit of a corner and so went with the intention of taking it easy but this is more or less impossible when in a beautiful town like Verona where there is so much to see and do. I was stressed and anxious about flying back on the 9th September and my stem cell transplant being on 10th September. I felt I had little time to prepare or pack for a possible three week spell in hospital or to recover from the virus.

Anyway I went and was glad I did despite coughing and spluttering my way round Verona and Bologna. I even went to see Aida at the famous outdoor arena which was fantastic.

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Prior to going away I had asked the transplant co-ordinator if my transplant might be put off until the 17th September to allow me more time to recover from the virus. She said they were already full for that week but that might change. When I got back on Tuesday, I went straight from the airport to the hospital for more swabs and was told that they had decided to put it off the transplant until the following week as I had tested positive for the virus before I went to Verona and they did not want me to be admitted with an infection. I was much relieved to have a little more time to recover and prepare. The next day I had my PICC line fitted and a pre arranged appointment with the transplant lead consultant to discuss the possibility of having a donor transplant after my auto transplant. What was discussed at that appointment has altered the plan once again!  I will deal with this in my next post but to give you a clue, I still haven’t had my transplant!

 

 

 

 

 

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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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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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Not Good Not Bad

Since my last post The Best Laid Plans I had a further light chain test, the results of which were pretty similar to the previous ones.  So not good not bad, just the same. Strangely, the last few hospital lab test results are in normal range but the trial test results are slightly out of normal range and in both sets of tests there has been little movement which my consultant finds reassuring. Perhaps the blood samples don’t travel well to where they are tested in France for the trial!

So the plan now is that there isn’t one! The situation remains the same. I have started my 12th cycle of treatment today and if my test results show any further rises the chances are I will have my second stem cell transplant sooner rather than later. If not I’ll continue with treatment hopefully until around August and then I will have a transplant. I feel much calmer about this now than I did when I wrote my last post. Right now I don’t have the energy to spend on being disappointed about not being able to plan etc because I have flu and am feeling pretty drained. It is not the way I would have liked to have come to terms with my situation but there it is (ideally I would have liked to come to accept the uncertainty of my situation through the path of spiritual enlightenment but we can’t have everything we want!).

I woke up in the early hours of Tuesday morning feeling shivery and with a temperature of 38.5. Oh dear, time to read the Haematology card I carry with me. it operates as a sort of get out of jail free card if I need to go to A&E. It means I should be seen sooner as someone with a compromised immune system and preferably in a isolation room.  Even so being in A&E is a hellish experience to be avoided.

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Although I am meant to contact the 24 hour haematology helpline with a temp of 37.5 and over, I knew they would tell me to go to A&E and I couldn’t face that so I piled on the duvets until I felt warmer and slept intermittently. Having survived the night, I then rang the trial nurse, Pippa at 9am. She arranged for me to go to the Haematology day unit and said I would be reviewed by a doctor.  Five hours later I was sent home with antibiotics after being tested, swabbed, examined and X rayed. My temperature had at least gone down but I felt exhausted. Nothing conclusive but the next day, the Italian doctor I saw rang me and said I had influenza and that he would arrange for me to be prescribed Tamiflu.  Flu?  Now I felt seriously ill!  So I have been resting but not bed resting, I am not very good at that, coughing a lot and producing copious amounts of snot. The worst thing though has been the combined effect of self pity, a lot of time spent alone and severe tiredness resulting in very negative flights of fancy about flu becoming pneumonia, treatment stopping, myeloma returning with a vengeance etc etc,  you know where this is going! I must admit too feeling a little like the cat below at times!

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As I am recovering, fortunately I am regaining my sense of perspective.  I hope that as my energy returns I don’t start getting frustrated and anxious about my situation and can retain that feeling of detachment that having the flu has given me.

Ps in case you are wondering, I have had the flu jab!

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

One year on

It will be exactly a year on Saturday since I had my autologous stem cell transplant (called autologous because my own stem cells were used). The day they are given back to you is called Day Zero, the days before minus 1 minus two etc. On -1 day, I had enough of a chemotherapy drug called Melphalan to kill me in an isolation room at the Manchester Royal Infirmary Ward 44 but on day zero  (1st September 2011) I was rescued by having my own stem cells put back which had previously been collected from my blood stream and frozen.  In my case I just had one bag back as there was a high concentration of stem cells in my collection and had harvested 4 bags in total, the other 3 bags are still in a freezer stored at some ridiculous number below zero. It took about 20 minutes by infusion. An anti hystamine is given prior to the infusion to minimise any reaction. Its no big deal on a physical level and I didnt have any reaction other than to emit a smell of sweetcorn which is very common. I couldnt smell it to start with but the nurse could. Once administered the baby stem cells needed to develop to form my new immune system as Melphalan was in the process of destroying my old one.
I waited impatiently in my isolation room for my neutrophil count to drop to zero which meant I had no immunity and takes about a week to kick in. I was allowed home over the first weekend as I was not neutropenic. Then as I got down to a lower neutrophil count, the side effects of the chemotherapy such as mouth sores, sickness and diarrhoea, nausea, loss of appetite and extreme fatigue develop and continue for about a week. My recollection of this phase is somewhat of a blur but I know that I got off lightly compared to some people with the side effects. My main issue was fatigue and lack of concentration. I had taken lots of books, audio books, DVDs, IPod and my laptop in with me but found it difficult to concentrate on anything for longer than 15 to 20 minutes. The TV in the room didnt work very well so I couldnt distract myself with that but the one thing that I did enjoy was the complete series of the danish version of the Killing which was gripping!
What stem cells look like (not mine)

 

I gradually started to feel less fatigued and more bored. My appetite returned and unusually for someone going through this process I wanted to eat but not what was the standard hospital fare. I started ordering off the Halal menu as the food was fresher and more interesting but perhaps a bit spicy for my delicate stomach. Then I discovered the West Indian menu and the Kosher menu but on the one Sunday I was there I had the roast dinner.  I couldnt eat it, it was so disgusting! Soggy and tasteless.

On day 14 I was allowed to go home as my neutrophil count had gone upto 3.2 so I was considered sufficiently recovered enough to be discharged home but had to be extremely careful with food hygiene and avoiding risk of infection for the first few weeks. I was tired and depressed, taking to the bed for most of the afternoon and was very short of breath hardly able to climb the stairs. However gradually everything improved. After my bone marrow biopsy around 3 months post transplant I was told I had a very good partial response as the percentage of abnormal cells in my bone marrow was less than 5% and my light chains were in normal range. I dont really understand why I didnt have a complete response but it was something to do with there being some paraprotein although too negligible too measure.

I had a new immune system.  When I went to see my acupuncturist, Amy Lai, she said I had crossed over to the other side and welcomed me. A beautiful canadian/indian actress called Lisa Ray claims to feel reborn since her stem cell transplant. I think if I looked like her I would feel reborn too!

So what do I feel?

I do feel like I am living a normal life again and like Lisa Ray (although she declined to take maintenance drugs, I didnt have the choice) I am drug free because the NHS wont pay for me to take effective maintenance drugs which have been proven to double the length of remission. Oh well.

Its scary how I have returned to a normal life on the surface. I am back at work, going on holiday, exercising, socialising, planning things (upto about 6 months ahead).  I can almost pretend that I  wasnt diagnosed with an incurable life limiting illness. Last year seems unreal and I dont pass a day without my mind making a connection with some aspect of my illness or recalling some details or incident from last year. Between December 2010 and December 2011 I spent 28 days staying in hospital altogether (kidney failure, diarrhoea and stem cell transplant). Not to mention the numerous hours put in at the haematology day unit with appointments and treatments and all the waiting in between. I suppose it is not surprising that I cant just put it behind me. Now its once a month for Zometa (the bone strengthener) and a three month clinic appointment. I sometimes strangely miss the hospital visits and the care and attention I had whilst there.

So I am going to be celebrating on Saturday, am I one year old in my new life so it is my first birthday or is it an anniversary? Or both!! Whatever it is I want to celebrate. My new immune system is one year old  but is still in its infancy as evidenced by the countless viral infections I have suffered but hopefully like me is getting stronger although my immune system will always be compromised.

I still have to live with the uncertainty of when the Myeloma will return. The standard advice is that it extends remission by 12 to 18 months but I dont know how long the remission would have been from the treatment alone so that doesnt help. There are people I know of who have been in remission for over 10 years and continuing but then there are people who dont even get 12 months before they relapse. The good response I had to the transplant doesnt mean that my remission will last longer. The way I feel now is that I cant believe I ever had Myeloma and I find it difficult to accept that it will come back because I am in good health. I almost look at last year as a gap year, time out to have cancer instead of travelling the world and having a life changing experience but although I didnt travel the world I did have a life changing experience. My life changed irrevocably last year and will never be the same again and now I am trying to inhabit a new normality, a way of being that means that I still try and make the most of life and not take anything for granted but daring to think a little further ahead and make plans for the future.

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Filed under Cancer, Health, Multiple Myeloma, Myeloma