Tag Archives: Revlimid

The kingdom of the sick

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor

Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window.  I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops!  It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise.  My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.

Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.

I saw an excellent musical last year called  A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor.  Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I?  It is a world where every day I am aware of my health, managing my health is a full time job. The hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.

I am increasingly disconnected from the well world. Fatigue, chemo brain,  loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of infection, steroid crashing or simply being too tired.

I am frequently asked where I’m off to next on my travels, anything planned? Answer is that it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands.  Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day.  In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of the locations where my favourite Nordic noir dramas were filmed and ate lots of pickled herrings.

img_1965

img_2010_srgb-2img_1903

Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.

img_2621

In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.

14 Comments

Filed under Cancer, chemotherapy treatment, fatigue, Health, Multiple Myeloma, Myeloma, Remission, Travel

At last some good news..

Yet again it has been so long since I last posted that I am having to play catch up.  Time has passed so quickly, the exceptionally mild winter moved as swiftly as the swallows and swifts arrived into an early warm and sometimes very wet Spring, fruit trees laden with pink and white blossom and new green foliage eagerly bursting through the soil. I was in hospital the latter part of March and half way though April last year having my cord blood transplant and more or less missed out on Spring so it has been a real delight to witness it this time. However it has been extremely hard to find the energy, concentration and inclination over the last few months to update my blog. I have tried and done the odd bit at a time but now I’m just going to get an update out there whilst I’m having a steroid day!  It isn’t all I wanted it to be but if I put it off any longer, it may never happen. It is somewhat a technical update about treatment which hopefully you will get through in order to understand the backdrop to my world the last few months.  Life with myeloma and on treatment has been even more of a rollercoaster ride than usual. Coping with the side effects of the treatment, fatigue, chemo brain, depression and infections has taken its toll. Although it has been about 5 months since my last post, time has a different dimension for me with little to distinguish one day to the next, yet although I am doing less, it doesn’t feel like it is passing more slowly. An average day for me might consist of a hospital appointment, going shopping or an hour in the garden or a meet up with a friend or watching TV and that is all I can manage except on steroid days.

Lets start with a (fairly) brief recap…

Late December 2015

I ended the last post on a bit of a cliff hanger as I was waiting for my clinic appointment on 31 December to find out the result of the light chain test from the end of the second cycle. It was very bad news, they had risen sharply to 3600mg/l. The hope that Revlimid might have kickstarted some graft versus host disease and with that some graft versus myeloma effect or that my new cells would be resensitised to treatment were dashed. I was desperate to switch to a different treatment but there wasn’t anything left on the NHS that was available to me apart from Bendamustine, an old chemotherapy drug from the sixties which seems to have had a bit of a renaissance recently for treatment of relapsed myeloma but really is the last resort. Rather than that, the boss suggested I have a third cycle of the same treatment but increase the amount of Dexamethasone (the steroid) to 4omg x 4 days each fortnight over the 28 day cycle, an enormous dose and add Clarithromicin to the treatment regime. Clarithromicin is an antibiotic which has been shown in a recent study to overcome resistance to Revlimid, incidentally a study that I came across and informed my consultant about!  In part the reason for the high dose of Dex was to try and help bring down my creatinine levels as they were elevated which was a sign that my kidney function was not good. The high dose dex might also help to keep a lid on the rising light chains as by now I was starting to feel the effects of active myeloma such as raised calcium levels, anaemia, fatigue and the reduction in kidney function. I seriously thought that I was approaching the end of my myeloma journey and that I might have about 6 to 12 months left. Note the word “left” rather than “live”. The psychotherapist on the Haematology ward whom I had been seeing didn’t try to dissuade me from my view but suggested I try and prioritise what was truely important to me if I did only have that amount of time left. What would I pack in my suitcase for 6 months, what would I leave out? What for 12 months?  I found that analogy helped me put in place some plans for life rather than be waiting to die. I still haven’t packed my suitcase though!

January 2016

I started my third cycle of Revlimid, high dose dex (interestingly sex, always comes up on my predictive spelling instead of dex but I certainly wasn’t prescribed that!) and added daily Clarithromicin. A rather depressing and anxious start to 2016.

I got a high temperature about 10 days later and had to go to A&E, which is standard advice when you are a haematology patient on treatment or recovering from a transplant. After about 10 hours on a trolley in a side room there, I was transferred to a haematology ward and pumped full of IV antibiotics and fluids.  I ended up staying in just under a week as I was still getting temperature spikes and the medical team were waiting for the results of swabs and blood cultures. I was given two units of blood as I was extremely anaemic and I had stage 2 acute kidney disease which used to to be called acute renal failure which is what led to my diagnosis. There is only one more stage! I had a very frank conversation with the boss on the ward round and she agreed with me that as no cause of infection could be identified and in view of my other symptoms it was more likely that it was active myeloma which was causing these problems. I was taken off Revlimid whilst in hospital as having chemo when poorly isn’t a good idea and it didn’t seem to be working anyway.

Lack of sleep, dex withdrawal, stress, anxiety and fear all played on my mind and I did think I was heading to a position where I was too ill to have any more treatment and the light chains would rise rapidly out of control ultimately in my case clogging up my kidneys and causing end stage kidney failure. After a lot of patient advocacy, I was released on parole 5 days later, the condition being I had to attend the day unit for the next few days for IV fluids, antibiotics and top ups of  magnesium, phosphates and potassium. They were long tiring days but better than being stuck in hospital and my kidney function improved.

At my clinic appointment on 18 January I  found out the good news that my light chains had gone down to 1300.  Praise the Dexamethasone! I felt a huge sense of relief and the fear that I was approaching the “end” subsided.  I started a 4th cycle of the same high dose dex regime on 26th January.

I have already described in previous posts, particularly in Dexamethasone the good the bad and the ugly just how badly I am affected by it, more the withdrawal or the crash than the actual days of taking it which just causes me to be a bit hyper and gives me some energy.  It is the depression, irritability with myself and others, low mood, lack of sleep, shakiness in my voice and hands and lack of mobility due to muscle wasting that affect me so much. My physical appearance changes too, weight gain and redistribution of weight to the torso, the red moon face and hamster cheeks, humped neck, bloated stomach and hair thinning that when I see myself in the mirror I hardly recognise myself.

February

Half way through the 4th cycle when I was tested again my light chains were down to 500mg and by the end of the 4th cycle they were 344. Everyone was happy. It helped me cope with the side effects of the treatment, knowing that it was working.

March

In early March I went for a short break to Sicily with my friend and travelling companion, Jet. It was a bit of a mixed bag health wise as I had sickness and diarrhoea for some of the time and the usual fatigue. It was unseasonably cold and wet too at times but it was a change of scene and I really liked the vibrant folk art paintings of a local painter, Fiore, some of whose paintings were in our B&B but we also saw him at work in his studio. I loved the painted plastic table and chairs outside it. What a transformation of boring white plastic outdoor furniture enhanced by the bowl of Sicilian lemons!

FullSizeRender FullSizeRender 2 FullSizeRender 3 FullSizeRender 4 IMG_1207

On 26 March it was the one year anniversary of my cord blood transplant. There was nothing to celebrate about it apart from the fact of survival which is good of course, given I was given a 20% risk of mortality in the first 12 months. It was more a time to note and grieve the fact that it didn’t have the desired effect of my new immune system attacking the myeloma. I’m still not over the disappointment, but don’t know how to reach closure and let it go. Hopefully more about this in another post.  I didn’t have much time to dwell on this as on 28 March I was back in hospital again for a week with a high temperature, this time with parainfluenza 3 which in immune compromised patients can develop into pneumonia. I was given the usual IV antibiotics and fluids but had to stay in until my temperature was stable and they got results back from swabs and cultures so they could see what to treat any infection with. I hate being in hospital and didn’t feel ill enough to be there which I said to the doctors on more than one occasion but other than discharge myself and risk having to go back in again with a temp spike and lose my room, I didn’t have much choice. I was taken off Revlimid again and as my light chains had gone up to 440 at the end of the 5th cycle that caused me some anxiety.

April

On the weekend after I got out of hospital  I had just about recovered from the paraflu and felt well enough to travel to my parents to  celebrate my Mum’s 80th birthday, then I spent the following weekend in London with a friend taking in an exhibition about Monet and the modern garden and lots of good food. It felt good to be able to do these kind of “normal” things but when I got back I felt poorly and I came down with yet another viral infection with cough and cold symptoms, this time my old foe Adenovirus. I am only just getting over this nearly 2 months later and it has really wiped me out.  On 21 April I started a 7th cycle of Revlimid, Dex and Clarithromicin. Light chains were 98 at the end of the sixth cycle. That was a really spectactular drop especially as that cycle was messed up as I wasn’t on treatment for a week and a half.  I was delighted and relieved but slightly anxious that it could be a lab error. Also the boss pointed out recently that I did take a double dose of dexamethasone during that cycle.

May

Despite the fatigue and the virus, May has been a quite a busy month so far. In early May, I ventured out in the evening, a rare event, to a couple of dance performances. As a birthday present from my parents, I tried out my flying skills on a flight simulator which was surprisingly realistic and fun. I landed in Hong Kong and St Maarten in the Caribbean fairly successfully without taking off too many roofs!. Then over my birthday I celebrated with friends and family with lots of meals out and cake. I also did a lovely 5 mile walk in Dovedale in the Peak District. It was all quite exhausting especially as I was steroid crashing but I’m glad I did it. I really didn’t think when I was first diagnosed at 49 in 2010 that I would make it to 55. At that time there was a 40% chance of survival for 5 years.

I started an 8th cycle of treatment on 19 May. The dex dose has been reduced from 40 to 30mg for the first 4 days of the cycle to see how that goes. The boss thought my fatigue was due to the cumulative effects of the treatment and the viral infections.  I also found out the results from the 7th cycle, my light chains were up to 160 from 98. Although up a bit, I was relieved that the previous months result wasn’t likely to be a lab error as they were not far apart.

Ok that is the update done at last! I included some of the things I have managed to do as a reminder to myself that there have been some good times and productive enjoyable days, but mostly I feel like life has passing me by as the last couple of months have been really tough going, both emotionally and physically. There have been so many arrangements I have had to cancel or events that I wasn’t able to go too because I’ve been either been too tired, unwell, or just not the right mind to attend or all three. Then I berate myself for not going. I have learnt that fatigue is not about whether I sleep well or not, which I generally don’t, verging on insomnia at the moment, but like an insidious relentless brain fog. On steroid days I make all sorts of plans, have more energy and feel quite good. But in the crash period that follows all those plans go out of the window and I just try to get through the day. It means that going to weekly classes or getting involved in anything on a regular basis is really difficult to manage as I never know how I am going to be from one day to the next. My quality of life is fairly poor at the moment and that may not change as I will be on treatment for the rest of my life now. When the current treatment combo stops working as my myeloma develops resistance to it, I will switch to something else. There will be no periods of drug free remission, no more transplants, another donor transplant would be too toxic and unheard of. So my challenge remains as always to live in the moment and live as well as possible, accept my limitations, get the balance right and not give myself a hard time if I don’t always achieve it. As I like to think of myself as a pretty good card player, I find this quote very apt!

“Life is not a matter of holding good cards, but of playing a poor hand well.”

― Robert Louis Stevenson

 

 

 

15 Comments

Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Travel, Uncategorized

Ain’t nothing but more bad news.

The post I had intended to write around the 7 months post transplant mark was going to be a slightly celebratory post about being able to enjoy “dirty” food having adhered to a clean diet for the first 6 months after my transplant. Following a clean diet means nothing unpasteurised, nothing live, no raw protein sources, superfastidious washing and peeling of fruit and vegetables, no open deli or bakery stuff and lots of other things. I didn’t majorly miss anything as my appetite was quite poor anyway. After 6 months I bought some of my favourite blue cheese, some unpeeled red grapes and was hoping to enjoy with a glass of red wine. The cheese was delicious but the grapes and the wine not so because of the GVHD in my mouth resulting in very altered taste. The taste is proportionately worse as the nutritional benefit of the food increases and I mostly enjoy extremely salty and/or sugary foods!

IMG_0142

 

 

 

 

 

 

 

 

 

Around the 6 month mark and except for the gruelling Cidofovir treatment I mentioned in my last post I felt I was getting stronger and less tired. I barely had time to enjoy my progress and recovery. So much has happened since that post 3 months ago I can do no more than briefly outline it otherwise I will continually be playing catch up which really isn’t what I wanted this blog to be about.

26 October

I got the devastating news that my light chains were rising from the test on 13 October, not just creeping up a little as they had been but going up sharply from 127mg to 634mg.  The plan to be off Cyclosporin (the immune suppression/anti rejection drug) and hopefully stimulate some more GVHD and graft v disease effect hadn’t worked  and wouldn’t work now that the myeloma burden was too high for my new immune system to have any control over it.

2 November

I started myeloma treatment which consists of Revlimid, an oral chemotherapy  which I take daily 3 weeks on and one week off and my old adversary dexamethasone, 40 mg once a week. I have had Revlimid before as part of VDR Pace but only for one cycle and I didn’t have any response to the regime. The hope is that now I have a fledgling new immune system, the myeloma may be resensitised to  Revlimid and/or it might provoke some GVHD.

5-7 November

A good weekend in London visiting a dear old friend taking in the excellent Weiwei exhibition, and the lovely Eltham Palace. I was tired but we managed to achieve a good mix of relaxing and doing.

IMG_0748 IMG_0754

23-28 November

A shortish break to Gran Canaria with my lovely oldest friend (old as in length of friendship, not age). A bit of a mixed bag as I was not really well enough to enjoy it but felt pressure to do so because I had gone and thought it was an opportunity to get away whilst I was able to.  It was good to get some sun on my skin (through the factor 50 sunblock of course) and swim in the sea but I couldn’t enjoy the cuisine or the drink because of my altered taste apart from the divinely salty pimentos padron.

IMG_0901

 

 

 

 

 

 

 

 

 

30 November

I found out that at my last light chain test 0n 16 November, two weeks into the treatment my light chains had risen to 990mg. The plan remains the same which is to have 4 cycles of treatment, each cycle being 28 days. I was told to ignore this test, logically I know this is right for various reasons but emotionally I couldn’t. Given the depression I have been feeling combined with the treatment being so hard on me, it would have been some consolation to know that I was responding.  I wasn’t to be tested again to the end of the second cycle on 29 December and will shortly find out the results. Started my second cycle, no GVHD or major reactions so far, the boss thinks if GVHD hasn’t happened by now, it probably won’t. More bad news in a weird way.

21 December

Suspected urine infection with associated high temperature. Was reviewed in the Haematology day unit and discharged with antibiotics rather than being kept in. Phew! Some good news, the Adenovirus test was negative and the CT scan of my chest was clear in the sense that the persistent cough I have had for the past 4/5 months wasn’t caused by GVHD or anything else however it did show myeloma deposits in the cervical skeleton but they may have been there for a while and I’ve still got rhinovirus.

29 December

Started my third cycle and will find out the results of my light chain test probably tomorrow if they are back from the lab in time. I have been anxiously waiting the last 6 weeks for this result but today I feel strangely calm about it.

31 December

Clinic appointment………………………………..??????????????????????????

This is the post I have been too fatigued, depressed and anxious to write as I struggle to come to terms with this relapse less than 7 months after my allogeneic transplant and all that I have been through. I knew that myeloma would come back but hoped for longer. I can only write this today because I’ve got a little more energy and inclination from the dexamethasone. I am also aware that this makes painful reading, another reason for putting it off and that I don’t know what to say to people about how I’m feeling and I suspect most people don’t know how to respond. I think I just want to be able to express my feelings in their entirety, the good, bad and the silly and be listened to. More of this maybe another time.

My fears now are not that I will die of transplant related mortality although there is still a 15 to 20% chance that I could in the 12 months post transplant but more that I will die from disease progression, that the treatment will not work as the myeloma becomes more aggressive and I will run out of treatment options quite soon. I don’t think I am afraid of actually dying though as Woody Allen says “I don’t want to be there when it happens!”  What I fear more is what my quality of life is going to be like in the interim and whether I will be able to do the things that matter to me. I fear having regrets. So far I have found the treatment so gruelling both on my body and mind (especially the dexamethasone crash for 3/4 days), I am barely able to find the energy to do or concentrate on anything due to the overwhelming fatigue, low level infections and insomnia. My mind swirls with crap and I can’t do living in the present very well. I am neither feeling positive about my future or strong, more a sense of failure. I certainly do not want to be told to cheer up, stay strong or be positive. I think my views on being positive are already known to most of my readers!

This time of year also has so many disturbing memories for me too, being 5 years since I was diagnosed, the kidney failure leading up to that and my first relapse around December 2012. This year was the toughest yet, got to say that was mostly to do with dex withdrawal but taking them on 23rd December gave me the energy to bomb down the motorway to Somerset where I spent Christmas with my sister and family. I had pre warned them that I would be tired, grumpy, withdrawn and irritable. I think it went ok and I managed to retreat to my bedroom when I needed to without feeling under pressure to be merry but finding enjoyment in being with my family, especially my lovely 8 year old niece who outclassed me at Mastermind (the old code cracker game, not the TV quiz).

Anyway I am feeling tired now but pleased and relieved that I have finally got round to doing this post. There is a whole lot more that I want to write and explore but that will hopefully have to be for another time.

In the meantime I wish you a happy new year.

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

TS Elliott

 

15 Comments

Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant

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.

IMG_1805                   P1030326

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!

6 Comments

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

VDR Pace Chemotherapy – the Zombie of cocktails

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

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

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

Zombiecocktail

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

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

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

IMG_1051

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

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

IMG_1364 IMG_1389 IMG_1508IMG_1432  IMG_1435

IMG_1484

 

4 Comments

Filed under Cancer, chemotherapy treatment, Multiple Myeloma, Myeloma, Stem cell transplant, Travel, Uncategorized