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!

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Hello relapse, goodbye remission

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

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

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

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

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

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

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

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

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

(pmdello- goodblood,badblood)

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

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

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

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

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

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

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

Whattaya gonna do?
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Clinic Appointment on Friday 13th !!

My next clinic appointment is on Friday 13th April (hope that is not a bad omen) and I will get the results of my blood tests which I had done yesterday.  I have the serum light chain test to measure my kappa light chains (which in my kind of myeloma were the ones that were abnormally high, over a 1000 when I was diagnosed, the normal range being around 3 to 19) and the results normally take about a week to come through.

Post transplant I have a clinic appointment once every 3 months when I see a haemotology consultant and have a light chain blood test so they can monitor my light chains.  In addition I have a bone strengthening treatment called Zometa once a month ( I need it after all the falls I have been having!).  In terms of medication all I have to take is Calcichew which is a calcium and vitamin D supplement.  I choose to take a vitamin B supplement, cod liver oil and turmeric capsules.

I am starting to feel anxious.

I am now 7 months post autologous stem cell transplant (autologous means my own stem cells).  Day zero to me was 1st September 2011.  They call it day zero because that is the day that your immune system is rescued having had a huge dose of chemotherapy the day before called Melphalan*.  If I hadnt got the infusion of the stem cells back on day zero then I would have died!

The idea of the procedure is to kill off any residual myeloma following  treatment and then to rescue my immune system with my previously collected baby stem cells.  Light chain tests I have had since then show my kappa light chains were within normal range so thats great news and I hope it continues as long as possible.  They have slowly risen since my transplant but are still within the normal range.

If the myeloma comes back within 12 months of my transplant I believe the transplant is considered to be a failure and although I have more stem cells stored in a freezer (not my freezer!),  I wouldnt be offered another one because the first one didnt work.  I would have more treatment to knock back the myeloma and then be offered a transplant from a donor.

Shortly after my transplant and actually even before it my consultant was recommending that I have a further stem cell transplant within 6 months of my first one.  A different type of transplant called a reduced intensity conditioning transplant or a mini allogeneic one. With this one you have less chemo but the stem cells are from a donor, the idea being to give you a new immune system. There is a significantly higher risk of dying, a longer period of recovery and potential long terms problem caused by chronic graft v host disease. The perfect donor is your sibling, but unfortunately my brother and sister werent a match (there is only a one in four chance of a sibling being a match). After that then a matched unrelated donor is searched for via the Anthony Nolan Register, more of which later on.  I was told that the aim of this transplant in tandem with the auto is to prolong remission for as long as possible in younger fitter patients. I was also told that I had a chromosomal abnormality which meant that I was more likely to relapse earlier. I was shocked to be given this news and didnt feel like celebrating the fact that I had a very good partial response to my transplant as I had a decision to make about having another transplant.

After lots of deliberation I decided to have the mini allo only to find out that there was only 1 potential match on the bone marrow register (that was by analysing his saliva sample) and when his blood sample was tested he was only a 7 out of 10 match in terms of tissue typing.  My consultant did not consider that was a good enough match to go ahead with the transplant (only 10/10 would do).  So after all that it couldnt go ahead and I felt a mixture of relief and disappointment.  Having initially told me I had quite common tissue typing, my consultant said on closer anaylsis it was quite rare and I have since found out that out of 26 million donors on the register world wide, only that one was a potential match for me.  Naturally I feel quite despondent about the chances of someone new coming onto the register that would be a match for me.  So this puts me in a situation where if I relapse before 1st September 2012 then I have no options other than treatment which I am or have been extremely sensitive too.  So not only am I a sensitive type, I am also an extremely rare type!

So my mission is to spread the word about the Anthony Nolan trust and get everyone I know who is over 18 and under 40 (which isnt many) to register online and then send off some saliva.  If you know anyone or are eligible yourself please check out their website

www.anthonynolan.org

Anthony Nolan is a pioneering charity that saves the lives of people with blood cancer who need a blood stem cell, or bone marrow transplant. In 1974, Anthony Nolan’s mother, Shirley, set up the world’s first bone marrow register to match donors with people who desperately needed a transplant.

Now, every day, we help two people in need of a lifesaving transplant by using our register to find remarkable donors who have matching stem cells, or bone marrow.

We are a UK charity with international reach. We carry out world class research into stem cell matching and transplants to improve outcomes for all patients.

WHY JOIN?

 We’re passionate about saving lives. It’s something we have in common with our donors, who regularly tell us that it’s the most rewarding thing they’ve ever done.

For someone with a blood cancer, a stem cell transplant may be their only hope of recovery. We make sure that when we do find a match, we’ve done everything to ensure the procedure is a success. That’s why we have such strict criteria for potential donors, in terms of general health and medical history. To help us work out if you’re suitable, please fill out our application form. It takes less than 10 minutes to apply.

Are you fit to spit?

As I am 50, I have decided to try and recruit 50 people to join the register this year, its not many but its better than none.  It costs the trust £7.00 to arrange for the person to go on the register, collect the saliva sample etc and I have decided to donate £7 to the trust for each person I have or my friends on my behalf have managed to recruit so if you do manage to get anyone to register let me know.

In the meantime I will try not to worry, I am looking after a friend’s dog, Lottie pictured below, this week which will be a great distraction, can eat alot of chocolate over the weekend as it is Easter, will enjoy spending time with my family, including my gorgeous and extremely entertaining 5 year old niece and  hope I get good news next Friday.

*Melphalan hydrochloride (trade name Alkeran) is a chemotherapy drug belonging to the class of nitrogen mustard alkylating agents. The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents. Nitrogen mustards are nonspecific DNA alkylating agents. Nitrogen mustard gas was stockpiled by several nations during the Second World War, but it was never used in combat. As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples (HN1, HN2, HN3, see below) are therefore classified as Schedule 1 substances within the Chemical Weapons Convention. Production and use is therefore strongly restricted.

During WWII nitrogen mustards were studied at Yale University and classified human clinical trials of nitrogen mustards for the treatment of lymphoma started in December 1942.^[1] Also during WWII, an incident during the air raid on Bari, Italy led to the release of mustard gas that affected several hundred soldiers and civilians. Medical examination of the survivors showed a decreased number of lymphocytes.^[2] After WWII was over, the Bari incident and the Yale group’s studies eventually converged prompting a search for other similar compounds. Due to its use in previous studies, the nitrogen mustard known as “HN2” became the first chemotherapy drug mustine.