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CLL - from Diagnosis to halfway through treatment on the FLAIR trial.

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25 May 2017

This is a long blog so grab some coffee and some cake. It covers my journey so far from diagnosis through "watch and wait" to halfway through treatment where I am now. Some of it may resound with you, and may have a common or similar experience, and for you starting on this journey maybe some ways to help you that I have stumbled upon.


For several years, I was donating platelets around every 4 weeks and fast approaching 100 donations, when at the start of my appointment in August 2013 I was told that at the last donation my white cells were slightly high and that before I could donate again I needed to get the all clear from my GP.  I left feeling annoyed that I could not donate but completely unaware of the maelstrom that was to ensue, and that it would be my last time at the Leicester blood centre to donate platelets, but the start of a journey of many more blood giving’s, but now not for the good of others.  

The GP upon reviewing my results referred me to the haematologist at Coventry Hospital saying I am sure it’s nothing to worry about but best to get this checked out.  After running my bloods at Coventry I was given the diagnosis that I had CLL, but all you hear is Leukaemia, because when you go into this you may have heard of Leukaemia, maybe of non-Hodgins Myeloma but completely unaware of how many types of blood cancer there actually are, but that was about to change.  They told me then that this was, incurable but treatable,  a very slow acting condition and some people will never need treatment.  But when you have been told you have cancer your world seems to come to the most immediate of stops and suddenly becomes horribly finite.  The cruel nature of CLL reveals itself in that it is a time bomb, even a very early diagnosis means there is no better outlook, only a longer and tortuous indeterminate time to suffer with it. 

Driving home and then telling my wife was surreal with so many more questions emerging as we spoke, and of course there were tears.  We decided then not to tell our three girls until and if treatment was diagnosed.  They are of the age where the adventures of a young adulthood are just ahead of you, before life gets too serious, and I did not want the guilt of them not having these experiences because the would feel as if they needed to stay close regardless of what we would have said.  So we were going to carry this weight of ”watch and worry”.

Watch and Worry

So after the first couple of appointments which were in quick succession I was put onto a 6 month watch.  I had been given some more information but had not really looked at it, I became very down and probably even mildly depressed, trying to ignore the fact I had CLL in the event that might make things better.  I did not look for help because this was incurable, so what help was there?

After a miserable couple of months and wondering after Christmas 2013 how many more were there would be, I finally snapped as I really could not be miserable any more.  Something had to change, and that something was me because nothing else would. 

So how do you go from being completely miserable with only negative feelings to one where you are positive or at least no longer negative?  You have to realise there are things that you can control and those which you can’t.  Getting CLL is one thing you can’t control, and its progression is another.  You have to accept there is nothing you can do about this, letting this go is tough but a relief when you do. I started to look at all of the information that was given to me and gained much more from various charities including a new one to me Leukaemia and Lymphoma Research, as we all know Bloodwise now.  I found out early on that Bloodwise was founded in 1960, the same year that I was born and so I felt somehow connected already to this charity.  I ignored much of what was on the web apart from what was on the charity websites as the misinformation far outweighs that which is real.  I became educated on this disease, what it is, its effects, the treatments and the trials that were around.

Everything you hear and read about chemotherapy is that there is a good chance it is likely to be debilitating with side effects, and potentially some of them serious.  My thought process was to get as strong and as fit as possible, to help as physically strong for when chemo arrived.  The other great thing about exercise is the release of the body’s own legal highs, which really helps in feeling positive.  I decided to start jogging and to get my bum of the couch I entered some events which I would need to train towards. I started with some x-runner mud run events, and this increased during the period of 2014-2016 running 4 mud runs, 3 tough mudders, 4 half marathons and 3 marathons. So CLL made me a runner, and a fundraiser.  If I was putting in the miles then I wanted to use this as a vehicle to raise awareness of this disease and to raise cash so that hopefully sometime in the future there will be no more reason to raise money to cure blood cancers.

There were things I had not done and I wanted to do, time was something that had become so very precious, and wasting it being miserable was absurd.  I wanted to go and visit Australia which I had never done, to meet my distant relatives in Perth, and to meet friends who had followed the convicts trail, but no longer an act of misfortune for them but one of fortune.  To take my family to China where I had visited many times with work and take my youngest to the USA where we lived to show her the sights her elder siblings had seen when they lucky enough to live there in their younger years.  So holiday plans were made and prioritised with Australia and China first in 2014 with the USA trips to be taken later if possible which luckily there was with west coast in 2015 and east coast 2016.

The six monthly appointments came regularly with the sense of dread building in the week before.  I found out more on the FLAIR trial and registered interest and given the initial P53 gene test to ensure acceptability which fortunately was all okay.  My lymphocyte level rose steadily and in July 2015 was moved to a two monthly appointment, this is a jolt as it indicates that treatment will be likely sooner rather than later.  By now my lymph nodes were definitely showing and my transformation to hamster was progressing, but not nicely.  My discussions with the haematologist became more focussed on the FLAIR trial and getting as much information as possible.  Now the information on FCR and IR the two treatment possibilities become more real and the list of potential side effects come more into focus.  As soon as my appointments went to two months the lymphocyte increase stabilised, it seemed to be laughing at me.  Well it stopped laughing after 10 months and the increase became rapid and was told that within 6 months I would likely be on treatment.  So after a long period when you actually start to think perhaps it has stopped for good it pulls the rug beneath you again.  But by now I was a great deal more resilient to the downs.

I got to the 6 month potential treatment start point in November 2016 but was still okay and it wasn’t until the January 2017 appointment that the “watch and worry” was over.  My bloods were showing platelets and white cells compromised and spleen was now very enlarged.  Despite having such long time to prepare you for this news and your expectations that the release of the watch and worry would be a huge weight off your shoulders, which it is for around 20 nano seconds, you are not prepared for the weight of the next anxiety of what the hell is the treatment going to be like, how will I deal with all of the side effects which you are convinced you will get?  The weight still remains, it’s just a different one.

Now the most difficult part, telling my girls that I had CLL and that treatment was imminent.  Of course there were lots of tears but I managed to keep positive and shared all the information I had on CLL which helped immensely.  Within two weeks they became less clingy and things started to become more normal.  During this period I also had to tell my parents who live 210 miles from me in Devon that I would unlikely to be able to come and see them so often over the next several months, again another tough time but made easier as my girls came with us who showed their strength.  So now everyone knew and Emma my eldest took my place on the Brighton Marathon in April which there was not a hope that I would be able to take part in.  They decided to raise funds for Bloodwise and by the time the marathon came only 3 weeks they had raised £2500.  Next step treatment.


After long period of just waiting with the regular but spaced out check-ups things go into overdrive, especially if you elect to go onto a trial.  Appointments are made for bone marrow tests, CT scan, ECG and bloods, bloods and bloods.  I had considered all options and decided to go onto the FLAIR trial.  On the day of my bone marrow biopsy at Coventry hospital the consultant came to see me and said we have some bad news.  A million things went through my mind before she could tell me what the problem was.  The laboratory in Coventry was temporarily  unable to prepare the trial dugs, the options going forward were to go onto the standard treatment of FCR, to wait until the laboratory reopened with an indeterminate timing, or to change hospitals who could run the FLAIR trial.  All of these options had their good and bad points but I had already taken the decision to go onto the FLAIR and was not going to change my mind, especially after the process of deciding to go onto the trial was quite an internal challenge.  Even with the chance of getting onto the Ibrutinib side of the trial was 50-50 I still wanted to be part of something that advances the prospects for those who will need to have treatment in the future.   To go to another hospital would have course add a delay whilst I was transferred and the other hospital agreeing to take my case, and I would have to start a new relationship with my new consultant, which develops over the months and years and is a concern in having to restart another one.  My spleen by now was getting very uncomfortable and letting me sleep for only an hour each night, which meant that the option of starting FCR treatment immediately, which I might get anyhow, was very tempting, but as they say no pain no gain.

It took two weeks to become transferred and to have my first appointment with the haematologist in Northampton General hospital in the very splendid Macmillan Haematology Centre.  Fortunately my spleen had settled down and sleep was possible as long as I slept on my back.  In that appointment the haematologist had already set up the bone marrow biopsy and CT scan for the following week, and I had to take another P53 test in case there had been any changes, extremely unlikely but they have to check.  The haematologist in that first appointment spent an hour with us asking me what I knew of the disease, the treatment and the trial to make sure she knew fully how much I understood, which after 3.5 years of living with CLL was quite good.  On that first appointment I also met the Macmillan nurse who had arranged my car parking pass, free prescription and basically a lot of the things to make things so much smoother.  She also asked me questions on my concerns and worries so a care plan could be developed.  Both the Macmillan nurse and the haematologist exuded care, this might be due to the care training and the ethos that those working in the Macmillan centre have, but whatever the reason it was fantastic. 

The tests.  The bone marrow test is not the most pleasant of experiences, but any discomfort comes in three 10 second bursts as they enter the marrow channel of the bone.  Then there is the ache in the evening but easily controlled with some paracetamol.  The CT scan is a nice laydown and only discomfort is trying to hold in the jug of liquid with contrasting dye that you have to drink the hour before the scan.  Such a welcome relief when it is over to be able to uncross your legs.

I had my pre-chemo assessment with one of the chemo nurses who takes you through what will happen on the day, the side effects, the do’s and don’ts, what you can and can’t eat, and answers any other questions you may have.  As I had not been randomised she took me through both IR and FCR.  I of course asked if I was able to have the odd drink of alcohol which she said of course yes but in moderation, but not to worry the drugs will help you out here as your taste buds will change and alcohol will taste metallic and not at all nice.  Not to worry only 6-7 months of it.

Once the result from the P53 test came back I was randomised and placed upon the Ibrutinib side of the trial which was such great news as there are potentially less side effects than the FC part of the standard FCR treatment.  But this triggered one further test an ECG.

My first treatment was booked for late March and the days before it I of course became very anxious.  The first cycle of Rituximab is given over two days, a very small amount on the first day to see if there are any major reactions and the larger dose the second day.  Both days they are given very slowly.  On the day before the first treatment you start to take the Ibrutinib tablets, and for the first cycle Allopurinol.  The Allopurinol is to prevent gout due to the raised levels of uric acid as the cancer cells breakdown at a high rate in the first cycle. On the first day my wife stayed with me for the 5-1/2  hours, and despite all of the anxiety the days preceding treatment, on the day I was very calm.  Today was the start of helping me to become better.  It takes around 30-40 minutes to have the cannula fitted and for the checks on the drugs to be made, taking a couple of paracetamol to counter any discomfort with the cannula and anit-histamine to prevent nausea.  The Rituximab arrives and the lines are flushed with saline and then the drug starts to flow.  Every half hour you are checked and asked if you are okay, which fortunately I was, and the dosage rate is increased.  This carries on until at last the bag is empty, a further 20 minutes of flush to ensure all of the drug is in and dispersed in your veins, out comes the cannula, a compression plaster and you are good to go.  That evening I felt completely normal with no side effects whatsoever, but then it was only 100mg.  Day 2 and the dosage was 600mg, and a case of groundhog day apart from this time my middle daughter took me there and I was going to be picked up later by my wife.  The centre provided a portable DVD player so I took a couple of discs to watch and a book to read.  One comedy moment is when it is time for a pee and you have to navigate your drug pump and all of the leads and tubes from your chair to the toilet and back, taking care not to trip over anything, dislodge the cannula and then to manage a two handed job with one.   As the day progressed the dosage was again increase steadily until I was on “turbo dose” for the last 20 minutes, but again another 5-1/2 hour session.  That evening I was tired and also on the following day.  The tiredness retreated very quickly as the days went by and within two weeks I could no longer feel any discomfort in the spleen, the lymph nodes on my neck seemed to be shrinking daily.  I kept a weekly photo log of how the neck lymph nodes were retreating and the progress was startling.  The 28 days went by and apart from a little more tiredness I developed no other side effects.  I had not lost any days from work apart for the treatment day.   In the build up to treatment you are convinced you are going to get multiple side effects and feel totally miserable, but I felt very good, my spleen no longer hurt my lymph nodes were retreating, I felt very lucky and happy indeed.

The week before your next treatment you have a review with the haematologist to see if you are okay for the next cycle of treatment.  I was feeling very good and had even managed a little run, I was confident I was okay to go for the second cycle and I was.  Two days later and I was in the chemo chair again this time having 1000mg of Rituximab, but as I was fine the first cycle the rate would still be slow to begin with but accelerated more quickly.  It started to feel very normal despite it being totally abnormal, maybe it was the years of platelet donating which normalised it for me.  Unlike the first session I felt drugged immediately after the session had finished.  Not too bad but I was certainly aware I had something in me, that evening I was very tired.  The following day I was fine but a little tired until mid-afternoon, then I went from 13 stone to 20 stone in the blink of an eye and I just had to sit down.  Like the first cycle within the first week the tiredness had retreated to just a small amount.  I was conscious that although I had escaped any side effects in the first cycle this was not guaranteed to continue.  But thankfully it did, and I even managed a few of small runs in the next couple of weeks up to 5 miles.  My lymph nodes had really retreated now and I no longer resembled the human hamster.   I was running, my lumpy lymph nodes were all but gone, I could still taste things, I was not feeling nauseous, and my hair remained in place.  I started to feel like a chemo fake.

So here I am now, I have just completed my third intravenous session of Rituximab 4 days ago, and I am on the upward curve from the tiredness of the first few days.  My swollen lymph nodes are no more, although due to the scarring internally to the nodes they will never shrink completely but are not visibly noticeable.  Even my bloods now have started to improve and did not show the white cell spike that can occur in the first few treatments.  The weather outside is fantastic but I am being ultra careful due to the increased sensitivity the drugs can give you to the sun.  So like the weather everything is sunny at the moment.

My family are just as pleased as I am at the progress that is being made and the normality I am living.  It is fantastic to see them acting normally around me and relaxing again.  So far the treatment has been so much better than I had anticipated, and the progress much more rapid than expected by me.  I am feeling very lucky, long may it continue.



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