I’ve gone viral!

Since my cord blood transplant I have been beset by one viral infection after another and sometimes two at the same time.  Apparently it is more common with cord blood transplants because the stem cells are immunologically naive, more so than their adult counterparts they have no antibodies or immunity imprint.

The main culprits have been parainfluenza type 3, adenovirus and rhinovirus (click on the links if you want to know more). Whilst my symptoms have not been much worse than a cough and a cold, these viruses, particularly adenovirus can be life threatening in immune suppressed patients after an allo transplant. This virus has been with me more or less since my transplant, sometimes when I am tested it has gone but then it comes back again. It means that when I attend clinic appointments or the day unit, I have to wear a mask as an infection control measure and sit in a separate waiting area on my own or with other patients with masks on too which is annoying as I can’t catch up with my transplant mates and my glasses get steamed up. It feels a bit lonely and isolating.

Initially I regarded having these viruses as a nuisance which they still are but I have come to realise that they could have serious consequences for me. I almost scared myself to death reading the following about adenovirus:-

“Viral infections may be associated with high morbidity and mortality in patients undergoing allogeneic hematopoietic stem cell transplantation (allo-HCT)1–3. Common viral infections after allo-HCT include those due to cytomegalovirus (CMV), Epstein-Barr virus, herpes simplex virus and varicella zoster virus. Other viruses, such as adenovirus, parainfluenza, respiratory syncytial virus, influenza, coxsackievirus, and rotavirus, are less common among allo-HCT recipients. However, adenoviral infection (AI) has been reported to be associated with significant morbidity and mortality in these severely immunocompromised patients.

Adenovirus is a double-stranded DNA virus that was first isolated in 1953 in a human adenoid tissue-derived cell culture. It has approximately 100 serotypes, at least 51 of which are known to infect humans 16. Infection occurs throughout the year but is most common from fall to spring. This virus can be transmitted by inhalation, inoculation into the conjunctival sacs, and probably the fecal-oral route. AI manifests as a number of clinical syndromes, including rhinitis, bronchitis, pneumonia, conjunctivitis, enteritis, hemorrhagic cystitis, and meningoencephalitis.”

(Extract from an article in the Bone Marrow Transplant Journal 2013 entitled “Adenoviral infections in adult allogeneic hematopoietic SCT recipients: a single centre experience” )

 

I’ve noticed now that persistent URTI’s (Upper Respiratory Tract Infections) as well as hypertension (high blood pressure) are listed as my co-morbidities in the letters from my consultant to my GP.

To try and boost my immune system to fight against these viral infections I have been having monthly infusions of immunoglobulins which having had 4 now don’t seem to be doing much good. I have also been on antibiotics most of the time which are really only of prophylactic effect since they don’t work on viral infections.

A few weeks ago on a Friday I was in the Haematology day unit for some reason I can’t now recall since I am there so often, when my lovely transplant nurse, Nijole, sprung on me the news that the boss wanted me to start a treatment called Cidofovir, to try and tackle the adenovirus. This was to start on Monday and would be administered 3 times a week taking around 4 hours to administer by infusion with fluids. I could feel tears start to well up and Nijole asked what was upsetting me. Between sobs I told her that on Monday I was starting the first lesson of the Spanish class that I had enrolled on so it meant I would have to miss it. What a baby! But what it represented to me was a step into the normal world, doing something other than being ill, recovering from my transplant and going to hospital. Nijole said we would work round it and I could have the treatment after the class had finished so I did go but the level was a bit too advanced for me so I have been bumped down to a another class on a Thursday afternoon after all that fuss!

And so I started this gruelling regime of antiviral treatment the following Monday which has been hard going. Early starts to get to the hospital in the morning following nights disturbed by coughing fits, my body wanted to lie in. On the days in between the treatment, I felt wiped out and nauseous. I had wrongly assumed it would just be for a week but then found out it would continue for 3/4 weeks.  It felt like going to work which incidentally it is just over a year since I gave up. No regrets about that, but on the other hand there’s not been much opportunity to actually miss it as pretty much since then I have had VDR pace, my second autologous transplant and my cord blood transplant. In all probability I would have been on the sick for the last year and there has barely been a day when I would have been capable of going to work. I don’t miss it but do miss my colleagues.

During the three weeks of Cidofovir stuck to a drip in the day unit, I inevitably encountered other patients with blood cancer also having treatment and chatted to some of them.  Sometimes it was a good way of passing the time but sometimes it was just depressing and I wished I’d kept my head down reading a book. There were post allo patients being treated for severe and various forms of GVHD  a couple of years or more on from their transplants which was scary. Some were very poorly.  I had to remind myself that the well ones wouldn’t be in the day unit requiring treatment. I felt quite wretched during this period especially when I found out afterwards that I still had adenovirus so the treatment had no effect and also had rhinovirus again. To add to the grimness, I also attended the funeral of a fellow myeloma patient at the MRI whom I had come to know quite well during the last couple of years. Of similar age and diagnosed at around the same time as me Jane had a donor transplant in 2012, enjoyed some remission and made the most of it but upon relapse her myeloma eventually stopped responding to treatment and took over. Her funeral was inevitably sad but a moving celebration of her life and what came across to me was that she didn’t let her illness stand in the way of doing the things she felt strongly about.  It drove home to me that I must do the same. I have a tendency to say to myself I’ll do this or that when I am better but I may never be better than I am now so I want to do what I can do now as far as possible and not put anything off until I’m recovered or in remission or not so tired. This GIF is quite apt, I need a new wall clock, maybe I should try and find one like this!

Clearly I need to strike a balance between looking after myself, not overdoing it, avoiding risk of infection and doing the things I want to do. Travel abroad is probably still out whilst I am tapering off the immune suppressants and have infections but there are other things I can do and have done. During this sweet gentle autumn we have been enjoying I have played tennis, been on cycle rides and even an anti austerity demo! Oh and of course, learning Spanish!

Vivir el momento que puede!

 

 

 

 

 

 

 

 

 

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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!

 

Baby Talk Part One

 

 

 

 

 

 

I haven’t updated my blog for a while as I dont know where to begin as usual. So much has happened since my post about my second stem cell transplant that I’ve not been able to step off the emotional (more so than the physical at the moment) roller coaster that is living with myeloma for a break.  I had hoped for a few months of not having to think so much about myeloma and the course of my disease, just a bit of time off for good behaviour!  Four months on and I have pretty much recovered from the physical effects of the transplant. I have a spotty face, dry eyes, occasional bouts of diarrhoea and usually wake up feeling like I have a hangover from hell!  I’ve been on two fantastic and completely opposite holidays, the first in Egypt exploring the underwater wonders of the Red Sea and then a few days later to Iceland exploring the land of ice and fire.

                  

The reason why I crammed these holidays in to such a short space of time will become apparent later on in this post.  That is the good news, the bad news is that a couple of months ago I found out that my stem cell transplant hasn’t had much effect on my light chains so it is unlikely that I’ll have much more time free of treatment.

The  further blow is that the boss here at the Manchester Royal Infirmary thinks I will be resistant to the next line of treatment, Revlimid, as it was one of several drugs in the VDR Pace regime that I had before my transplant to which I also didn’t respond. After Revlimid there is only one further new line of treatment currently available on the NHS called Pomalidamide and the boss didn’t seem to have a good view of that either. I asked her how long she thought I’d got, the answer was one to one and half years. I was completely shocked on two levels…….that my stem cell transplant hadn’t worked and that my disease may be resistant/refractory to Revlimid which I was saving for a rainy day. The timescale for living was sharply brought into focus and my awareness of my mortality became very real again in a flash. I am probably more conscious of this than most people I know because of living with an incurable life shortening disease where the chances of surviving more than 5 years from diagnosis are only 45% but even knowing this I have sometimes felt or even assumed somehow that I am going to live much longer. The failing aggressive treatments and multiple relapses have now provided a much needed reality check! Hence the holidays to Egypt and Iceland.

The purpose of the meeting with the boss whom I don’t normally see was to discuss a donor transplant, technically called an allogeneic transplant. This has been lurking in the background to my first and second transplants ie an auto followed by a donor transplant, usually within 4 to 6 months of the auto. Because it is tandem to the auto, it is called a reduced intensity allogeneic transplant (a RIC allo for short). The idea is that you get the high dose of Melphalan that I described in my post on the auto transplant and then your own stem cells back to rescue your bone marrow. This hopefully keeps the myeloma at bay whilst you have the donor transplant a few months later where the chemo given is generally less intense and designed to dampen down your immune system so the new donor cells can engraft and hopefully recognise the myeloma cells as foreign and attack them.

A RIC allo was suggested by the boss after my first transplant in 2011, it being offered to younger high risk patients like me as it may give a longer remission and in a small number of cases be potentially curative. Maybe about 10% of patients live for 10 years or more after an allogeneic transplant. At present in the myeloma field there is no other treatment that can be potentially curative in this way. Sounds great, why wouldn’t I have it? Because on the downside it carries a significant risk of transplant related mortality and chronic graft versus host disease which could severely affect my quality of life. The generally quoted figures for transplant related mortality for an auto are around 2/3 %, for a RIC allo it is more like 20% depending on exactly what type are having.  I agonised over the decision the first time around, should I take my chances and see how long I got from my auto, some people get years, or should I take the risk and go for it as it is best performed upon first response?  I bravely or foolishly decided to go for it only to later find out that there was only a 7/10 matched unrelated donor (my brother and sister weren’t a match either) so the RIC allo couldn’t go ahead and the plan was shelved until, if and when I had my second stem cell transplant in the hope that a suitable donor might have come on the register by then.

When I relapsed, the prospects seemed slightly better as I was told that there was a 9/10 match which might be a possibility.  My approach was to take it one step at a time, get through my treatment and my second stem cell transplant and then have another discussion with the boss. I did have a preliminary discussion with her before I started VDR Pace and she told me that upon further analysis the 9/10 match wasn’t ideal as there was a weight issue ie the donor weighed a lot less than me so I might not get enough stem cells for my body weight from her. I suggested I go on a diet but the boss didn’t think that was a good idea when recovering from my transplant! In any event there was a mismatch at an important level which meant there was a much greater risk of mortality from the transplant.  She suggested I might have a cord blood transplant as an alternative.

This is where umbilical cord blood is used as a source of donor stem cells taken from babies whose mothers who have kindly agreed to donate their baby’s umbilical cord. It is then typed, stored in a cord bank and registered with the Anthony Nolan Trust. There is less chance of a mismatch because the stem cells are immunologically naive. As an adult I would need two cords.

It has rarely been done in myeloma patients and there is very little to go on in terms of its effect on disease control in myeloma patients. The further disadvantage is that there is no possibility of a donor lymphocyte top up which is possible in the usual type of donor transplant to try and stimulate graft versus myeloma effect if a patient is showing signs of disease progression. At one point the boss said it would be experimental and she wasn’t sure that she would be willing to do it. We left it that I would get through my autologous stem cell transplant and decide after that and she would contact a Haematology boss at the City Hospital, Nottingham, a renowned transplant centre, whom she thought might have done some for myeloma. I also asked her to find out more about my tissue type as I was thinking about starting a more personalised Anthony Nolan campaign to try and find a match with the aim of getting more recruits to the register and wondered what my genetic background might be.

She found out that there had been two cord blood transplants carried out by the boss in Nottingham for myeloma patients, one was doing very well and the other not so well, so not very helpful but both were still alive! I did a trawl of the internet and found a study from France on the use of cord blood transplants in 17 relapsed myeloma patients which seemed to demonstrate a graft v myeloma effect and similar survival stats to RIC allo studies which she found encouraging. On that basis she said she would be prepared to do it. She also had a response from the tissue typing people at Anthony Nolan about my tissue type :-

“For Wendy’s HLA type, she has one half of her type which has been seen quite a lot in European populations – mainly from Eastern Europe, but it’s most common in Croatia, Poland& France (about 6-11%).

The other half of her type has never been reported in any known populations. There is something very similar (A antigen mismatched) in a few European populations (especially Germany/Netherlands).

New haplotypes arise by genetic crossing over, and it isn’t too unusual for HLA-A to be crossed over when a new embryo is created. My best guess is that somewhere in Wendy’s ancestry (and it’s not possible to know at which point) a new haplotype was created in this way, and that the descendents with this haplotype have not spread far enough yet to make it common. This is why it’s fairly easy for us to find a 9/10 match, but not a 10/10. Wendy’s HLA antigens are not desperately uncommon in themselves, it’s just that because the genes in the HLA complex are very tightly linked together, this particular combination aren’t usually found together.

Hope its not too confusing”

Wow, I’m annoyingly rare, a new haplotype, is half of me alien? A lot of this is way over my head but I finally knew there was no point in clinging on to the hope that if I waited a bit longer I might get a 10/10 match or even a suitable 9/10 match as there would always be a mismatch at a major level. So before I had my autologous transplant I knew my options afterwards were either going to be the experimental cord blood transplant or see how long I got from my second transplant and maybe have Revlimid maintenance. I tried to put this out of my head until I had the further meeting with the boss about two months after the transplant and concentrated on getting through it and living day to day.  If I thought about it too much it would spoil my determination to live in the present. And that is what I have to do. That is enough to take in in one post, Part 2 coming soon!

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

Just before a very cold and white Christmas in 2010 I was diagnosed with multiple myeloma. I literally collapsed into a heap in the corridor of the Manchester Royal Infirmary when I found out what that meant. I thought my life was over and I would be dead within months.  I was right about  life being over as I had experienced it before myeloma but thankfully wrong about my demise being imminent. Since then life has been different, far more challenging both physically and emotionally, but bizarrely more rewarding and dynamic. Four years on, 2 autologous stem cell transplants, several different types of treatment, multiple relapses, hundreds of blood tests, hospital visits, 9 bone marrow biopsies and numerous holidays later, I am still here! That I am celebrating that is good but bittersweet as it serves to remind me of the loss of my previous healthy life and the passing of others with myeloma who didn’t make it to 2015.

Thanks to all those who have followed and commented on my blog in 2014. That my blog has been looked at 19,000 times is amazing albeit that the most popular post is still frothy urine, as it was in 2013! And I still have it!

SKOL!

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

The best laid plans……

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

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

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

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

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

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

 

 

 

 

And on the sixth cycle …..

Velcade gave me complete remission!

I’m half way through my seventh cycle of Velcade and Dexamathasone and the time from the start of treatment in August seems to have whizzed by. In some ways I am surprised by how normal life has been. I have had an excellent response to treatment, my kappa light chains are now in normal range and I am in complete remission.  The plan is to strengthen that response with another couple of cycles followed by a stem cell transplant (from my own stem cells) and then possibly a donor stem cell transplant a few months later. I try not to think too far ahead to these procedures, as the latter especially is not without considerable risks.

I am fortunate that apart from the awful dex, (see my post, Dexamethasone, the good the bad and the ugly) the side effects of the treatment have been fairly minimal and I’ve tolerated it well without all the numerous infections and issues I had on my initial chemotherapy. Managing to work, rest and play including trips to Palma, Cornwall, London to see the ATP world tour mens tennis finals. I also went to Barcelona and Girona a couple of weeks ago where I took these photos of the sparkly Christmas decorations and the stunning Sagrada Familia by Gaudi. I was disappointed to see that it still hasn’t been finished though!  I’ve also started playing tennis again after recovering from a painful  and debilitating nerve compression problem in my neck (which I am pleased to say turned out to be nothing to do with myeloma). Oh and I’ve also started running again mostly on dex days! In fact the outward appearance of my life is so “normal” that I think people forget I am on chemotherapy!

For the past few years this time of year has been associated with bad things happening in my life.  It was just before Christmas in December 2010 that I was diagnosed with myeloma, I described how that was in my post The Nightmare before Christmas.  And this time last year I found out that my light chains had risen out of normal range which turned out to be the start of an upward trend signifying relapse and a turbulent and stressful 2013 at times. I’m hoping this Christmas on my 7th cycle will be completely uneventful, with the only thing hanging over me caused by over indulgence!

It is three years today since I was diagnosed with myeloma  so today is a milestone of sorts. According to the most recent UK stats for survival  from Cancer Research UK  (http://www.cancerresearch.uk.org/cancer-info/cancerstats/types/myeloma/survival/multiple-myeloma-survival-statistics)

I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive 5 years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or the 14.9% that survive 10 years? Who knows?  I hope so and I know there have been further improvements in overall survival rates since this study due to the newer and better treatments but realistically there is a very strong possibility that I won’t make my 60th birthday or even my 55th.  Of course I feel sad about that but on the upside, at least I won’t have the stress of planning how to celebrate it!  However there will be the pressure of trying to make the most of the birthdays I am around for as as well as the dilemma of how to live a significantly shortened life.

The milestones like birthdays, number of years post diagnosis, stem cell transplant anniversaries etc are great but counting the milestones as simply the passage of time is meaningless. It is about how we spend the time between each milestone that matters.  I can’t very well live every day as if it is my last but want to make sure that I spend as much of my precious time as possible doing things I enjoy, being with people I love and care about and having fun.  So no pressure then! The counter balance to this is accepting the times when I am  feeling down, fatigued, ill, horrible, anti social etc etc are not a waste of my precious time and that I don’t have to do anything for the sake of “making the most of whatever life I have left”.

I love the lyrics to this song by Leonard Cohen, (A Thousand Kisses Deep). I don’t know what they mean to him but to me they sum up my experience of living with myeloma, the periods of remission, relapse and dealing with a reduced like expectancy.

The ponies run, the girls are young,
The odds are there to beat.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.

I’m turning tricks, I’m getting fixed,
I’m back on Boogie Street.
You lose your grip, and then you slip
Into the Masterpiece.
And maybe I had miles to drive,
And promises to keep:
You ditch it all to stay alive,
A Thousand Kisses Deep.

Felices fiestas

Nothing to say?

I have been struggling to write a new post since Butterfly on a Bush written just after I started treatment. I knew that I would find it difficult whilst on treatment but I am trying to figure out why that is. I don’t want to stress about it but all the same I would like to post an update.

So far I have had a really good response to the treatment which has brought my kappa light chains down from nearly 3000 to 188 at the end of the third cycle. They did actually go down to 50 but went back up to 180 at my last test result.  Of course, I am hugely relieved that the treatment is working to bring the myeloma under control and I am physically much better than I was before I started treatment, as the symptoms I was having caused by myeloma being active have disappeared. However the rise concerns me, is it just a blip, a response to a viral infection or an indication that my disease has already become resistant to velcade? The answer will be determined by the next test result, as usual, it is wait and see.

I started my blog a few months after my stem cell transplant. My blog was intended to be about my reaction to living with a life shortening and incurable blood cancer and how I deal with that rather than the nitty gritty of treatment, side effects and the technical aspects of my disease although you all know about my kappa light chains and frothy urine! I lacked the composure and ability to reflect on my emotional journey during my initial treatment leading to the stem cell transplant. I was just dealing with it the shock and trauma of it all and was very depressed.

Since starting treatment for relapse, I find I am more composed but with little to say about how I feel about this period. From January to August, I have been relapsing and to use a cliche, it has been a roller coaster of a journey, the inaccurate test results, whether I could go to India, whether I could do the triathlon, what treatment, waiting for the trial, my light chains rapidly rising making me unwell with myeloma. I was in a highly charged emotional state during this period, it was exciting in a perverse way but also draining and stressful. Now that I have actually started treatment I have settled into a rather dull routine of  Monday and Thursday  visits to the Haematology day unit for the first two weeks of each cycle to receive an injection of velcade into my stomach and the third week off steroids and velcade with a clinic appointment at the end of each cycle to review my progress and side effects. I fit in going to work in between these appointments if I feel up to it.

Now that I have a treatment schedule and have entered the myeloma world again, I am less stressed than I was, flatter and calmer  but am struggling to to accept the way my life is right now and so gloomy about the future, feeling increasingly disconnected from the “normal” world that I was able to be part of during my remission. I have lost confidence, feel edgy and slightly uncomfortable in the normal world, different to everyone else. I think I am suffering from post traumatic relapse disorder, if there is such a condition, there is now I have just invented it! I have almost reverted to the mental state I was in when first diagnosed, like why me, it’s not fair, my life is over etc etc. I thought I had come to terms with all of that. Added to that pot of misery is the disappointment of relapsing relatively soon after my stem cell transplant (some people get years, why not me?) and the question of how long I can survive has lead me to becoming increasingly obsessed with researching the net on latest treatments for myeloma, studies and statistics as if knowledge is power. I am not sure it is helping me as I have no control over my disease progression, only over how I cope with it emotionally.

I am as always trying to live in the moment, and there have been some good ones, I went to the beautiful island of Majorca for a few days to visit some friends and swam and sunbathed, went to the Yorkshire Dales to see some friends, walked along the lovely river and watched a local inter village cricket tournament, a now en route to Cornwall for a few days. I feel a certain degree of pressure to plan nice things in my week off treatment but just because I am off treatment doesn’t mean that all the side effects magically disappear, the fatigue stays and the effects of steroid withdrawal such as mood swings, irritability, paranoia, depression and shakiness kick in.  Sometimes I prefer just to be home alone watching the blackbirds eat the little grapes off my vine!

So in summary, it seems for someone with nothing to say, I have found quite a lot to say.

“These are the days that must happen to you.”
― Walt Whitman

The Loneliness Of The Long Distance Runner

I am obviously not a long distance runner, not even a short distance runner at the moment but the solitary nature of running is used as a metaphor in this excellent short story as the main character turns to long distance running as a way of escaping both emotionally and physically from his desperate situation.

Taking part in a triathlon this year and doing the 10k last year has become something similar to me, a way of escaping the world of myeloma both mentally and physically. It signifies that I can do normal things (though some would say that it is mad not normal) and reach a level of fitness which has no place in the world of myeloma. I truly appreciate having been able to be fit and active since my stem cell transplant if not fitter than before diagnosis without bone pain or in fact any pain that some of my fellow myeloma suffers have as a legacy of myeloma even when in remission.  As for the loneliness, living with myeloma can be lonely and scary. I appreciate the acknowledgement of this by a long distance friend who doesn’t have myeloma in a comment made by Prue about my last post, the Myeloma Trilogy  “I reckon it must be quite a lonely place at times…so this is a hello!!!

However I am pleased to say that I won’t be on my own doing the Salford Triathlon next Sunday. My individual place has been substituted for a team place and I am grateful to two friends for doing the swim section and the run section at the end. I still intend to do the middle 20k bike section but have someone on standby if I cant.  I have had to accept that I am not in a position health wise to do all of it and stopped the intensive training a good few weeks ago, finding myself breathless and exhausted. Anyone that knows me will know that I hate to admit defeat and don’t like giving up but now I have accepted it I am pleased and excited to be doing it as part of a team and hugely relieved that the pressure (all of which was self inflicted) is off.  The photos below were taken at a open water swim in a lake in Cheshire on a lovely sunny day and yes that is me gliding through the water with a Myeloma UK swim cap on! Just to prove I had been doing the training!

So neither lonely nor a runner but I will be taking part in the Salford Triathlon on Sunday 18th August and I hope you will support me. You should be able to click on the Just Giving Link on my blog to take you to our  Just Giving Page.  Needless to say I am raising money for Myeloma UK.

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???