Tag Archives: Manchester Royal Infirmary

Baby Talk Part One

umbilical-cord

 

 

 

 

 

 

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.

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

Trials and Tribulations

Life is rather strange at the moment. I have relapsed but I am not on any treatment. I am quite well physically yet my kappa light chains were approaching 2000mg/litre at the last test on 21 June.  Another sharp rise then by about 850mg, I wish I was IT adequate so I could put graphs on my blog posts. Normal is up to 19mg per litre. However much as I might like to be normal, I am not!  I am adjusting to these figures each time and they now really mean very little.  I found myself saying to a friend who also has myeloma ” they’re only 2000″!! I remember when I first found out I was relapsing I was devastated that they had risen over 100 but at that point I was dealing with the trauma of relapse. Now I have got used to the fact that I have relapsed, that the light chains are not going to go back down of their own accord and I need to start treatment at some point probably quite soon.

I have the same physical well being as I did when I was properly in remission and my light chains were in normal range.  I am told that my relapse is biochemical rather than clinical as I have normal range blood results and kidney function and am showing no signs of bone damage ie pain! Therefore the only way it is detected is by the free light chain test of my blood serum. The last few weeks since my stay in hospital with a high temperature (see my last post, A Room with a View )  I have  seen my own consultant twice and went to St James Hospital in Leeds for a second opinion from Professor Gordon Cook which was extremely helpful. The purpose of the second opinion was to discuss treatment strategies, both immediate and long term.  We have discussed trials. One excellent trial c0-ordinated by Myeloma UK has been ruled out (the MUK5 trial) as my exit strategy isn’t compatible with the trial objectives. However another very similar trial aptly called the Endeavor Trial looks suitable for me as it compares a new drug which is not available off trial (Carfilzomib) against an older version of a similar drug (Bortezomib). There is a 50/50 chance of getting the new drug but it is not open at the Manchester Royal Infirmary yet. I keep being told shortly or two to three weeks but that has turned into a few months now as the trial sponsors seem to be prevaricating. Which is why I am waiting and waiting and waiting.

To hold the myeloma at bay, I was given a 4 day course of high dose dexamethasone  a couple of weeks ago ( a steroid commonly used as part of treatment of myeloma). I experienced a very bad reaction to dexamethasone whilst on treatment before. During the  days of the cycle I took it  I suffered from insomnia, carb/junk food cravings and shakiness.  The plus side is energy surges. Long term use resulted in  blurred vision, muscle wasting, heavy aching legs and tinnitus. During the intervals I wasn’t taking it I suffered withdrawal symptoms such as irritability, severe low mood and lack of concentration. I thought that as the recent dose was just a one off 4 day course,  I wouldn’t get these effects but guess what I did!  Not the long term ones but the short term ones. The good part of it was having energy for a works night out and drinking rather too many mojitos, then going to a friend’s house gathering that lovely first weekend of the start of summer in the Cotswolds and being able to do some rather energetic disco dancing for quite a long time! No photos of that I am afraid.

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The downside was that for 2 to 3 days after taking the course I felt extremely low and irritable to the point where I had decided that I wasn’t going to take any treatment for my relapse if it was going to make me feel like this and I would rather let my disease take its course! I can find that laughable now but I really did feel like that at the time. It doesn’t bode well for the commencement of the suggested 6 to 8 cycles of treatment which will include dexamethasone and one of the drugs mentioned above. Will I be able to tolerate it both mentally and physically?

But whilst I am waiting to start treatment either on a trial or off trial, I feel like I inhabit two alternate worlds at the moment

The Normal World

Where myeloma is not mentioned. Work is extremely demanding right now as I am busy dealing with another kind of fast approaching trial, the highest value  claim and most interesting case I have ever handled. I want to see it through to conclusion.  I am making arrangements for conferences, meetings and court hearings to take place over the next few weeks without knowing whether I’ll be able to attend them. I am continuing with all my other usual activities including training for the Salford Triathlon on the 18th August which involves 6 training sessions a week. More about the triathlon in a post to follow soon but if you want to sponsor me or find out more just click on the just giving link on my blog.  Then there is of course much to enjoy about this glorious spell of  Mediterranean  style weather we are experiencing in the UK at the moment.

The Myeloma World

In this world I am a relapsed cancer patient not yet on treatment, being clinically managed by Haematologists, with very little control over what happens. Spending a lot of time thinking and talking about my chromosome abnormalities, clinical trials, drugs, treatment combinations, stem cell transplants, kidney function, kappa light chains, treatment strategies and having endless blood tests. This world consists of mostly waiting for results and at the moment a trial to open and uncertainty. Different friends came with me to my last two appointments and both were amazed by the level of knowledge I had about myeloma and the treatment of it. When I start treatment this will mostly become my world again.

Which World?

Well I don’t have much choice. I know I have to start treatment and once I start it I will have a routine and some say feel better mentally for it.  The anxiety caused by waiting and worrying that I am going to get kidney failure, bone damage or a serious infection would be replaced by the anxiety  that I will no doubt feel about coping the side effects of the treatment and whether it will work but I am already feeling anxious about that now so I suppose starting treatment removes one layer of anxiety!.

On the other hand, I oscillate between wanting to get treatment underway and wanting to delay it further whilst I am feeling so well so I could enjoy the rest of the summer and do the triathlon and perhaps even approach the 2 year anniversary of my stem cell transplant on 1st September free of treatment? I guess the decision is out of my hands. To use my currently much overused phrase “I’ll keep you posted”

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”
―     Gilda Radner

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Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Uncategorized