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.

                                                     

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

 

 

 

 

 

 

Advertisement

Baby Talk Part Two

Firstly please ignore the post from last week, I was spewing out a quick draft whilst waiting to be seen at the hospital, clicked on what I thought was the button to save it but it turned out to be the one to publish it! Damn, those that follow my blog by email will have seen all my spelling mistakes and poor use of the English language!

Anyway back to Part 2 of Baby Talk. Just to refresh your memory from my last post, Baby Talk Part One, I’m at the post auto transplant meeting with the transplant boss. She’s told me the bad news that it looks like my stem cell transplant hasn’t worked, then she dropped the bombshell that I am unlikely to respond to Revlimid as the next line of treatment and then that the donor transplant as an option is a no goer as there will never be an adequate match for me. Can it get any worse?  For those reasons she suggested a cord blood transplant which she has never done for myeloma before but would be willing to give it a go.

She explained what is involved and the risks and benefits of the procedure. The risks are numerous from failure to engraft, meaning that the cord blood stem cells don’t take in my bone marrow so I could die because my bone marrow has been wiped out by the conditioning chemo I will receive prior to the transplant. Then there is high risk of infection whilst I am neutropenic and waiting for the new stem cells to engraft and also for the next year or so. A clean diet must be followed for 6 months and travelling abroad is not possible for 6 to 12 months. Hence all the holidays! And finally I am highly likely to develop some graft versus host disease which in the first 3 months or so is called acute and after that it would be considered chronic which could be a long term issue. GVHD is where the new stem cells don’t like being put into my environment (me being the host) and attack it causing skin, gut, mouth, liver or other organ problems which can be life threatening or “not compatible with life” as another doctor recently said to me.

And of course while all this is happening there is the possibility that the myeloma is coming back. The only good thing about getting GVHD is that hopefully it means that the new stem cells don’t like my myeloma cells either and attack them too, as long as the myeloma burden is not too high. And that in essence is how a donor transplant works whatever the source of the stem cells ie adult or cord blood. It is a form of immunotherapy, the aim of which is to replace my defective immune system with a new healthy one.

So the benefit is that it could give me a new immune system that deals with the myeloma cells and kills them in a way that my own fails to do. That is if I survive the procedure and don’t get any life threatening infections or GVHD. This graft versus myeloma benefit could last a long time, as I said before, a small proportion of patients may be considered “cured” and die of something else.  Or more likely according to the boss, I could get a year or two out of it before I relapse. I have to view it as extending my treatment options rather than being a cure. When I relapse I can be retreated with previous drugs that I may have been resistant to as my immune system will be different as well as being able to try any newer treatments that have come on to the market so it gives me more options (with the remote possibility of being curative) than I seem to have if I don’t have it.

If the autologous stem cell transplant had been effective then the decision would have been more difficult as I could perhaps count on 6 months or so remission, then a slow relapse before I needed to start treatment again. But the way it looks now is that my light chains are slowly creeping up and I would need to start treatment quite soon and that treatment might not work, if the boss’s fears prove to be correct. I’ve been quite heavily treated and the more treatment you have the harder and stronger a different myeloma clone comes back.

I left that meeting feeling overwhelmed and upset but more or less deciding to go ahead with the cord blood transplant assuming there were cords available and my light chains had not risen significantly higher. I would have a 3 month post transplant bone marrow biopsy to find out. Then I thought of more questions to ask after I left and had a second chat with the boss to talk it over again the next day. The talk was of having the transplant as quickly as possible and I needed to make a decision so that the cord blood tissue typing process which takes a few weeks and costs thousands of pounds could be commenced.

This was probably the most difficult decision that I would ever have to make. How do you decide? Toss a coin, ip dip, set up a poll on my blog and ask readers to vote, weigh up the evidence (there is hardly any), ask my friends what they would do (they don’t know), ask others I know with myeloma?  I was on the horns of a dilemma. The boss said there was no right or wrong choice, just the one that I felt sat right with me. Am I a risk taker in life, no not really, but maybe this was the right time to be one?  I am also very indecisive about the simplest of decisions which coupled with my cautious nature and resistance to change does not equip me very well to make decisions. Yes I had previously decided to have a donor transplant before but the risks were fewer, I was 3 years younger, in very good remission following my transplant and assuming I would have a fully matched adult donor available. At the second meeting I thought about asking the boss the question what would you do if you were advising your sister or if it was you, not sure whether to ask it or not as I thought most doctors would duck out of answering that question, but she volunteered the information saying that if she were me she would do it. I asked her if she was recommending that I have it with all the inherent risks and she said yes she thought it was my best option, not that there were many.

It was that strong expression of opinion which is quite unusual from doctors that helped me make my mind up to go ahead with it and she said she would initiate the cord blood matching process and arrange a bone marrow biopsy. I asked about going on holiday as it was only two months or so after my transplant and a little early for travel abroad and she said go for it, life is too short and so I did!

Between coming back from Egypt and going to Iceland I had a bone marrow biopsy and when I got back I got the results which were that I had 5 to 10% abnormal cells in my bone marrow. If it was much higher than this than the cord blood transplant wouldn’t go ahead and the doctors seemed to be pleased with the results and I was given an estimate of mid to late March for admission for my transplant which involves a stay in hospital of 4 to 6 weeks.  I have 10 cords that match and the absolute best two have been selected, one from within the UK and the other all the way from Australia! NO expense spared! I have passed the various pre transplant heart and lung tests, am feeling pretty fit and good to go.

I now have a date of the 20th March for admission and the start of the conditioning chemotherapy which will go on for 5 days, followed by total body irradiation on the 6th day and the cord blood stem cells infused in the same way as my own cells were last time on the 7th day. Then I have to wait for the new cells to engraft whilst becoming neutropenic. If they do engraft and my neutrophils pick up I’ll be allowed to leave, if they don’t then as a last resort I could be given my own stem cells back to rescue me as I still have some left. Then I will be closely monitored and on powerful immunosuppressant drugs for around 100 days afterwards.

The last month or so I have spent lovely precious time with my family and friends. I have been happy but also highly emotional in a good way,  everything and everyone seems better and brighter, like I am seeing the world through rose coloured glasses or maybe I truly have been living in the moment (or maybe I have taken drugs of a non medical nature).

I am nervous, scared and anxious and despite my views on positive thinking (see a previous post, hello relapse, goodbye remission)  feel that this is the time to take a risk and be positive as long as no one is telling me to be positive!

I intend to blog about my experience in hospital to try and while away those 4 to 6 weeks in an isolation room but in the meantime wish me luck!

 

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.

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.

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.

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.

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

VDR Pace Chemotherapy – the Zombie of cocktails

A further quick medical update as promised following on from my last post, The end of an era.  At an appointment on on 10 September that had been arranged with the lead transplant Consultant to talk about the possibility of a donor transplant after my auto transplant I was given the bad news that the percentage of abnormal plasma cells in the bone marrow was around 5 to 15 % and ideally it should be under 10% prior to transplant.  In consequence, much of that meeting was taken up with what to do about this.

The doctors were suggesting that rather than go ahead with the transplant on 17 September, I have one cycle of VDT Pace which is very heavy duty combination of 7 different drugs involving 4 days of a continuous cocktail of four different drugs given intravenously as an inpatient. The purpose of that would be to try and reduce my myeloma levels to be in the best possible position prior to transplant. I didn’t know much about it other than it was usually given to patients when all else had failed so it was a shock to me to be considered in this category.

I questioned whether this was really necessary as the one round of PAD I had just completed reduced my light chains to 49 from 100 so why not have another cycle of that but the consultants seemed to think that this regime should blast it, the equivalent to a Zombie cocktail in terms of strength.  I am partial to a cocktail or two but would probably never have one of these as it just contains too much alcohol!

Rather than questioning this further which would be my usual inclination I accepted it. I note this is more of a trend with me now, not that I have stopped keeping myself informed about Myeloma and treatments, just that I have given up thinking that there is a solution out there that is available to me and might be better.

For more detailed information about this treatment and the protocol, click on the this link, LNRCNDC001409_DTPACE1 . I didn’t have the T part (thalidomide) because I am intolerant to that so I had Revlimd instead. I also had Velcade added which technically makes it VDR Pace.

I started it on Thursday 18th September and I was allowed home the following Tuesday having tolerated the side effects fairly well apart from the main side effect of complete boredom whilst being attached to a drip! I think my facial expression says it all!

The rest of the treatment was oral Revlimid for 21 days and one further Velcade injection. I felt nausea, fatigue and had mucositis (a sore ulcerated mouth caused by the chemo). I can no longer remember the experience distinctly as so much has happened since then, save to say it was extremely grim.

A bone marrow biopsy was arranged for 23 October and I got permission from the Doctor to go away on a short trip to Europe, a week after the cycle ended subject to my blood test results being reasonably ok.  I decided on Menorca and had a lovely time. The only limitation being I couldn’t swim because of the PICC line in my arm but I was very happy and surprisingly active considering what I had been through being able to cycle along lovely country lanes and walk along some of the ancient Cami De Cavells.  I fell in love with Mr Boatsman, a rather handsome French Shepherd Dog belonging to my B&B host. Hard to believe my cycle had only finished the week before. This felt a world away and helped take my mind off what was coming next, my stem cell tranplant scheduled for 5th November. More on that in my next post.

 

 

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.

                                      

     

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!

 

 

 

 

 

The Party’s Over

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.

Upping the ante

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

Some photo’s below although not of the MRI!

 

S    

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

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

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

Butterfly On a Bush

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

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

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

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

 

The Myeloma Trilogy

My blog updates recently have been about these strange and difficult times I am going through with my relapse and whilst this update doesn’t bring any good news I wanted to take a more light hearted approach to my current situation with more than a passing nod to my passion for Nordic Noir which started for me with the Millennium Trilogy by the late Stieg Larsson with its complex and compelling central character, Lisbeth Salander.

So here is my version

Part 1

The Girl with the High Kappa Light Chains (aka The Girl with The Dragon Tattoo)

Below is a representation of a light and heavy chain component of a protein so if ever I was to have a tattoo I suppose I could have this motif repeated in a chain round my muscular biceps (not!) but I think I would prefer a dragon tattoo!

                                 

My kappa light chains have risen again to 2725 from 1975 mg/litre or something like that. I felt upset and disappointed that the course of dexamethasone I had been given (see my post Trials and Tribulations)  to try and hold the myeloma at bay hadn’t appeared to have had any effect (or maybe it stopped them being higher who knows?).  This time though I am finding it hard to shrug the high number off so easily as I am now displaying symptoms of active myeloma which are causing me not to feel so well for the first time since relapse was confirmed.

One feature of my rising kappa light chains over the last few months (which doesn’t make me unwell) has been the reappearance of frothy urine which is foamy and bubbly in appearance, like a lager top or bubble bath. For those that are curious this is what it looks like in the toilet bowl! I am back to drinking 3 litres of fluids a day to keep my kidneys being flushed out.

I have written in detail about it in a previous post, Frothy Urine. I noticed it when I was first diagnosed and had acute renal failure but as my light chains went down with treatment and eventually into normal range it tailed off and became intermittent and at the point when I wrote about it, it was because of residual kidney damage meaning my kidneys leaked proteins occasionally. This surprisingly has turned out to be my most googled tag line after myeloma so clearly a lot of people have anxieties about protineuria and although it can be a sign of something serious it isn’t necessarily so. At the moment it is being caused by my high kappa light chains as excess light chain proteins are being excreted into my urine through my kidneys. The concern is that my kidneys could become clogged up with those proteins as they did last time and cause casts to form which prevent the kidneys from functioning. I am now being monitored for my kidney function weekly and at the last test my kidney function was slightly abnormal but nothing to worry about. Another sign that my myeloma is becoming active though

Part 2

The Girl Who Displayed High Fever (aka The Girl Who Played with Fire)

Since I last wrote about my temperature spikes which resulted in the dreadful 2 day stay in hospital,  A Room with a View, I  have had quite a lot more although I managed to get away with attending the Haematology day unit 2 times instead of being admitted. I was observed, blood tests and cultures taken and sent home with no cause of infection established. About two weeks ago I started getting a temperature of 38 degrees centigrade daily and was feeling shivery and unwell. I was given a course of oral antibiotics but these had no effect and the only thing that helped was taking paracetamol but of course this masks infection and only lowers the temperature temporarily. This period caused me much anxiety and resentment, but being reassured that there was no infection, later became more of a debilitating nuisance requiring a lot of resting and keeping warm or cool depending on my body temperature. The doctors are putting it down to myeloma related fevers. But I  camped at a music and arts festival a couple of weeks ago straight after escaping the day unit, had my fevers, took paracetamol and had a good time in the circumstances. The friend I was meeting up with there checked out where the nearest A&E was and promised to take me there if I needed to go. I didn’t. I have played tennis a couple of times too which I really enjoyed.

On the fire theme, my red blood cell count is below the usual range for females, not much but enough to make me slightly anaemic which explains my increasing fatigue and low energy of late feeling short of breath and wondering how I will ever be able to do any triathlon training, let alone the triathlon in 3 weeks time (an update on the triathlon is coming very soon). Again this is a common symptom of myeloma, (and also a side effect of the chemotherapy that is used to treat myeloma).  I mentioned feeling resentment before and what I resent is that I am now experiencing symptoms of myeloma which are starting to impact upon my health without actually being to take any benefit from having any chemotherapy to treat them. The only positive to the misery of being on toxic chemotherapy is the expectation that it is reducing the disease burden. Yet apart from the Dexamethasone I am still waiting to start treatment so nothing is happening except I am not so well right now when I could be not so well on chemotherapy but at least getting the benefit! I always wanted to be fit and well when I started treatment but it seems that the balancing act has tipped too far in favour of waiting for the trial to open rather than starting treatment off trial.

Part 3

The Girl Who Kicked Ass on Dex (aka The Girl Who Kicked the Hornet’s Nest)

Yes I have once again been given a short course of Dexamethasone, this time more to keep my kidney function stable which I hope works more successfully than the last course did for keeping my myeloma at bay. When I took the first 20mg on Saturday mornng I felt my fatigue go and became filled with a surge of energy which was just what I needed as I had a 101 things to do that weekend that I hadn’t had the energy to do in the week. It seems to have stopped the fevers too which is great. What fabulous stuff , I know I’ll crash when I stop taking them but it’s worth it for now. What I really need is to start treatment and I was fully expecting to when I went to my clinic appointment last Friday to start something off trial if the trial wasn’t open but my consultant it seems had other ideas. He told me that Onyx trial still hasn’t opened at my hospital but it is getting closer to being ready as they had the initiation meeting the day before and at least he had a pack in his hand with the trial details. It could be open next Friday with me having a bone marrow biopsy and some other tests required for the trial and then starting treatment just over a week later as the dexamethasone needs to be clear of my system for 14 days before I can start the treatment. He made a cursory offer of treatment off trial there and then but I had 5 minutes left before I had to leave to have a skeletal xray survey so it seemed pointless to do that if the trial is really that near to starting. So can I hold on? Will it be worth it, I hope so?

In my dexy state, I have this fantasy that I could send Lisbeth Salander on a mission to get the Onyx Trial to the MRI. There are quite a few Onyx trial centres running in France so she could set off on her motorbike from Stockholm in her black leathers looking gorgeous and ride south to France. She could fake some ID to get into the  hospital (I visualise this as being somewhere in Paris) break into their IT centre, hack into the Onyx trial data, copy it and then hack into the Central Manchester Healthcare Trust database and copy everything over creating me as their first patient. She would design the randomisation process so that I could only get Carfilzomib, the newer drug. So when I go to my appointment (perhaps with her?) this Friday, it is miraculously open, I sign up, get randomised to Carfilzomib! The drug is delivered and off I go!

Here is Lisbeth Salander in action on her motorbike and me on my motorbike during my rebellious student days. I don’t look quite as cool and mean as Lisbeth Salander but hey I look quite cool. I seem to remember I liked posing on it more than I did riding it!

                                             

Once more I must be a patient patient and hope that I can get started on treatment soon. In part because I have not been feeling quite so good recently,  I am ready and resigned to leaving the normal world behind me for a while and entering the myeloma world I talked about in my last post (trials and tribulations).  Letting the chemotherapy do its work and hope that it does and that I can manage the side effects.

Skal to that as they say in Swedish

ps oh no that couldn’t possibly be, in that glass she is holding could it???

The Nightmare Before Christmas

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.

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

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