This post concludes my FCR chemotherapy treatment diary from two years ago. It is a warts and all story, and if you decide to read it please remember that many people will have a much better time of it than I did. But whilst I had a bit of a rough ride, chemotherapy worked well for me and two years on I continue to be in remission with no sign of CLL returning. This despite the fact that I had the unmutated IGHV marker which woulds predict that there was a lower chance of a good response than if I had more favourable markers. I am told that the cancer will return at some point, but there are other selective treatments that I would then be eligible for.

The full treatment story

•  The Day Leukaemia Changed My Life 
•  Two years ago I started FCR Chemotherapy 
•  FCR Chemotherapy diary – Treatment Looms 
•  FCR Treatment Diary – Gratefulness during Cycle One 
•  FCR Treatment Diary – an unexpected hospital admission 
•  FCR diary – Cycle 2 as an Inpatient 
• FCR Diary – Home at last and Cycle Three

Cycle four

A couple of weeks before I wrote this I had a dream. Well more of a nightmare really. I dreamt that I had a huge hole appear in my leg. I guess some kind of flesh eating abscess or something. The next morning I woke so convinced it was real that I had to check my legs and was so happy that they were both intact. 

One of the health professionals I see said to me that my body has failed me in quite a profound way over the last 18 months or so. And that as a result it’s no wonder that I sometimes feel sad or anxious. I’m afraid this morning is one such time. I guess I have had a bit of a run of bad luck when it comes to my FCR which I’m taking as part of the FLAIR trial. 

It’s been a case of wondering what will hit me next. 

So far I managed to eat a chicken roll and get admitted with a horrible campylobacter food poisoning. During that admission lose what little mobility I had so I ended up in for a month and had cycle two there as an inpatient. I was put onto morphine because of the severe pain in my back caused by what they believe is an unrelated haemangioma in one of my vertebra. 

For cycle three I developed an eye infection just before it and then had a nasty allergic type reaction to my treatment which led to a two night admission. 

And nausea was quite a problem with cycle one and three and we’ve not been able to work our what made Cycle two better on that front.

So perhaps it’s no wonder I’m a little apprehensive about cycle four which starts this morning. 

What’s not helped is that I developed what we are presuming is a urinary tract infection over the last few days and am having pain passing urine. I was hoping that would give me a reprieve but apparently not as I don’t have systemic symptoms like fever or loin pain. Supra-public pain is less of an issue apparently. Of course I’m already on morphine so I’m assuming my pain would be even worse if not. I’ve been on antibiotics for a couple of days now. 

As I write I’m waiting in the chemo suite for today’s blood results to come back so we can get going with what will be a slower infusion than most people have at this stage to try and avoid a recurrence or the allergic type problem. It’s a bit alarming as obviously the concern I have is that the reaction will be the same or worse than last time. 

I am alone. That is my choice. But I suddenly FEEL it. At a time like this I do allow myself to feel the way I feel. But acknowledging the emotion I also remind myself of what I can be grateful for. My lymphocyte count a few days ago was just 0.13. And it’s been consistently below 0.5 since cycle two and below 1 since the end of cycle one. Not too shabby considering it was 95(thousand) before treatment started and was doubling every three months.

Perhaps some Doctors might be even talking about withholding the last three treatments. But mine want to maximise this first and only FCR blast of my illness. They (and I) want to send it to as close to being cured as possible. And as people have said when I see that bag of poison attached to my arm I must remember it is being given to extend my life. 

I am grateful that the chemo seems to be working. 

I’m grateful for the care of the professionals. 

And I’m grateful that although I feel alone I do believe that Someone is here with me. 

I could go on. But just those few things to be grateful for are already making me feel better.

The rest days

The rest days of my FCR Cycle 4 are now drawing to a close. To the extent that I had a little cry when I arrived at the hospital. It’s possible that may happen again, but I do feel a bit more positive this time round as I prepare for cycle 5. Why?

Because unless something very odd happens in the next couple of days I will have made it through a whole FCR cycle without being admitted to hospital. 

This last cycle has been more normal. Much more the usual experience of many where it is relatively straightforward. I did have a bit of an allergic reaction during the infusion, leading to my asthma being a bit worse than normal for a few days after. And my nausea and vomiting was not well controlled this time round for some reason. 

But other than that, the first couple of weeks went really well. Though I have been waiting for this sudden return of energy some people experience and it just hasn’t happened for me yet. I have been able to get to church a bit, however, and so perhaps there is a small degree of slow improvement. I guess I just have to be patient to see what energy levels I finally end up with.

I did unfortunately 8 days ago now catch the flu and as I had a temperature I had to go to A and E where they were able to confirm that I did indeed have the Flu and that I didn’t have neutropenia. So I was sent home with Tamiflu.

This led to several days in bed, with cough, nausea, vomiting and even more fatigue if that was possible. But my immune system seems to have been able to fight it off, which is good news.

I do encourage you to get the flu jab and get your family to do the same to try and avoid catching it and if you do get it

Anyway there is not a lot to report. I did record a Facebook Live video at the time which might be of some interest to some of you. 

Cycle five – they call us patients so we can learn patience

So a week late after a neutrophil count yesterday of over 4, it’s time to go with cycle five one week late. (Last week I had a neutrophil count of 0.75 or 750 for the Americans). So it was worth the delay as we start from a better position than we would have done if we had kept to time.

Im not feeling so anxious as I figure as I have now finally got through a whole month’s cycle without spending a night in hospital perhaps I can do the same this time. And that was despite catching flu a couple of weeks ago.! So hopefully today there will be no tears. Sometimes we feel down. Others we don’t. And there really doesn’t have to be much rhyme or reason for it. 

Aside from already feeling nauseous by way of anticipation (they haven’t given me anything yet!) I don’t feel too bad today. Oh yes my back is also aching because of the gruesome ambulance rides but that I suppose is to be expected. 

Unfortunately however since the results of my flu swab test they took yesterday are not back I’m banished to a side room which feels a bit like a prison! Hence the picture. But as I’m symptom free in terms of the flu that’s not going to stop them poisoning me today. 

Six more days of chemo treatment to go including today. Then hopefully never again in my lifetime as if I need other treatment it will be the modern more selective treatments. 

Felt like it was an unclimbable mountain when I started. I feel I can see the light at the end of the tunnel now. I’m trying not to worry myself too much with just how much of an improvement in my energy levels I will be able to achieve. That will become clear in the next few months I suppose. 

The good news the consultants keep emphasising to me is that with a lymphocyte count that was 95(thousand) and doubling every three months the fact that after the first treatment days it went below 1(thousand) and hasn’t come back above that number since is really good news. 

In some centres from what I hear from American patients they might not even continue till the end of the six months treatments. But here in the UK the idea of finishing what we started is still the practice. The idea being that hopefully we are destroying as many CLL cells as possible and extending the time till I need treatment again. Although of course I am only too well aware that despite my history of multiple challenges during this FCR treatment it could certainly have been a lot worse. I have a LOT to be grateful for. 

UPDATE: it’s now more then 3 hours since I’ve been here and we still haven’t started treatment. Apparently my nurse was looking for me as she didn’t know I was in a side room, and I had fallen asleep so didn’t realise how long I had been waiting. Looking like they might move me out and poison me in a public area (which is better in many ways) but either make me wear a mask or it’s possible that by now the result is back. 

Everyone repeat together “they call us patients because we have to learn to BE patient!”

The treatment once it started was straightforward.

Cycle six – the end is near!

So hard to believe that today is day 28 of cycle 5 which has gone smoothly apart from the little matter of me being lost in the hospital. I was given a newer more expensive anti sickness drug called Aprepitant which worked really well. And so I didn’t really have hardly any nausea at all. As a result of that and less fatigue I bounced back quite quickly really. 

This may have been helped as per the FLAIR protocol I had a reduced dose since I had become somewhat neutropenic (0.75). 

Anyway as much as possible I tried to forget I was having chemo again. But all being well it will happen tomorrow. 

Today I have to go up, have a blood test, see the cll specialist and confirm that I am fit for chemo tomorrow. Then we have three days of chemo and I will have finished my FCR forever. 

Today I also see a neurosurgeon about the benign tumours that are growing in my vertebrae. When the doctors said don’t have anything done before chemo is over it seemed an age away. Great to think that by Friday I will hopefully have finished my treatment days. 

Three Months after FCR

I write this on the morning of my three month post FCR bone marrow biopsy and CT scan. I was randomised to FCR in the FLAIR trial here in the UK. 

Hopefully next week I will have the results of both at my three month follow up (though I have been warned that it’s possible that one or both may not quite be ready). 

It’s always important to stress in these personal diary type posts that everyone’s journey is different. So many people will have a lot better time of FCR than I did. 

So how do I feel having completed FCR a few months ago? And how do I feel about the prospect of these results and my future?. 

For someone with a more aggressive cancer than CLL moments like this are sometimes rather black and white. One might have been told your cancer may kill you in a matter of months, but that there’s a chance of a cure. And so results might often indicate either be amazing news or mark the beginning of the end unless there was some kind of miraculous experimental cure on offer. 

With CLL it’s much more a case of shades of grey, not black and white. 

I am a bit apprehensive about the biopsy but the edge of that has rather been taken off by the diazepam I was recommended to take this morning. You can blame that drug if this article is incoherent. I’ve also just taken another when I arrived at the hospital so will try and publish this before I feel even more whoosy. Fortunately I don’t have to drive there and back. People don’t realise just how excellent a drug diazepam is for short term use. That and the happy gas should mean I’m away with the fairies during the biopsy which I’m told will probably use an electric drill (allegedly more comfortable for the patient). But sadly I will not be totally unconscious since my hospital doesn’t do them under sedation. 

I’ve been reading other people’s accounts of their own bone marrow biopsies, and it’s been largely reassuring. I’m wearing a nice loose pair of jeans thanks to someone’s recommendation on here. 

As for the results of the tests of course I am interested to hear just how well FCR has managed to abolish my CLL cells. By rights according to some data and opinion I should not have had as good an effect as I have. I’m walking proof that FCR CAN have a dramatic effect on unmutated cells. 

My lymphocyte count remains safely under 1 as it has been since the first of six cycles. We went for all six cycles to try and get to MRD negative status and perhaps even beyond. Basically the goal was to kill as many CLL cells as we can. 

Some people worry about having a low lymphocyte count. Since even before treatment even my “healthy” lymphocytes were just about useless with insufficient antibody production, I actually see this reduction as a really good thing. There’s even data that suggests that following FCR the longer your lymphocytes remain suppressed below one the better for your prognosis. 

But here’s the thing even if I get a completely clean bill of health from this CT scan and even if they can’t detect CLL cells in my bone marrow because they are so rare, this does not a cure mean. 

All it means is that the estimate is that less than 1 in 10,000 cells they examine are cancer. Yes it probably would point to a greater chance of a longer remission, but even that is not guaranteed if your cells are fast growing. 

So it feels hard to imagine even the cleanest possible result as anything other than a lighter shade of grey than it would be if the result still shows a lot of infiltration.

And on the other end of the extreme due to the fact my visible nodes have melted away, and my lymphocyte count is so low it’s hard to imagine a set of results from these tests so bad that the doctors would immediately want to treat. Clearly though, the worse the result the darker the shade of grey. And the higher the chance of me needing retreatment sooner. 

Perhaps oddly I don’t actually feel as concerned as you might think about the possibility of needing another treatment at some point. I know that as an unmutated CLLer it is almost certainly coming. And it could be quite soon. And so I think of my FCR as delaying the start date of a more selective agent and just possibly giving me some extra time at the front end which might just be added on to the back end. Nobody knows for sure yet which first line strategy is best in the really long term and so I’m very happy to be contributing data to help answer that question via FLAIR. 

But why shouldn’t I at least hope for the chance of being one of the less than 10 % of unmutated people with CLL who make it to eight years and beyond without needing another treatment ? Mutated people have much better odds of a really long remission with FCR than unmutated like me. 

How do I feel about FCR looking back on it?

Well I am glad it is in my rear view mirror and that the NHS won’t make me go through it again. It’s my ticket to getting fully funded ibrutinib or venetoclax as much as I need for the rest of my life with no co pay. So we can knock the NHS and socialised medicine but I am glad of it for sure. 

At the moment my gut feeling would probably be for me to take venetoclax and rituximab second line when I need it (I’m assuming the rituximab helped with killing my cells) and then aim for another treatment free period. But of course ibrutinib would be another option. But things are moving so fast that something else may be around by then. 

What about the side effects of chemo?

I do of course remember the nausea, but would report that got a lot better when we found the right cocktail of anti sickness tablets for me. 

The allergic type reactions were also uncomfortable but relatively easily dealt with. 

I have had a bunch of infections. But to be honest I’m not even sure that I wouldn’t have caught some of these anyway. I was certainly getting plenty of infections before hand. Whatever treatment we are on does reduce our immunity further initially so I am glad of my prophylactic azithromycin, contrimoxazole, and aciclovir. The second of these may stop if my CD4 lymphocyte numbers improve. But I suspect I’m probably on the other two for the duration. 

Do I worry about secondary cancer? Yes a bit. But I know I was already at risk of that before treatment, having had precancerous polyps removed from my large intestine. And I’m not so sure that we can directly attribute all secondary cancers to FCR. People do still get them on other treatments, and even if untreated. And since other treatments also suppress whatever useful lymphocytes we still have we can’t assume that those who get Ibrutinib first line will definitely be fine on this front. 

And what about fatigue? Well it is true that I was admitted to hospital for a month after my first chemo treatment unable for much of that time to even get out of bed. Now that may sound like an FCR horror story. But two things make it seem clear to me that it definitely wasn’t the FCR that was robbing me of my strength to such a degree. 

First of all, my ability to walk had been dropping off rapidly in the weeks before starting. So I’d even been struggling to be able to walk to and from the toilet in my house. I often joke that as soon as you can walk to the loo it’s time to discharge you from hospital, but there’s an element of truth in that joke. 

Secondly, the decision was taken whilst I was bed ridden to give the second dose of FCR. If the extreme fatigue was caused by it you’d expect it to then have got worse and continued to get worse over the following months. So I guess a brave decision at the time but I’m sure my doctors had seen this kind of thing before. 

Anyway, after that second treatment I didn’t get more fatigued but rather slowly started to get stronger. Exercises I had been doing in bed to try to strengthen my muscles which hasn’t worked at all now started to. 

And since then with all the fluctuations of fatigue associated with infections, and the sense of a gradual progression towards improvement I’m not too sure that FCR has really made matters worse for me on the fatigue front at all. The so called chemo brain feeling has been with me. But I also had before treatment even began. And yes I still have it. But at times I do feel my brain is at least a little bit more clear. And writing for a short spell is not quite as difficult as it was at the worst point. 

So I do feel a sense of some improvement in how I’m feeling. And there are a few small things I can now do that I couldn’t before. But progress is too slow for my liking. I must learn patience.

Yes it is discouraging that I am still struggling with significant fatigue, and disheartening to hear that some go on with such a struggle even when they are in a good haematological remission. Even CLL specialists don’t seem to be –that– interested in our plight since they have not done much research on this matter, perhaps because they feel there is not much they can do. 

Im back to wondering if I might have some kind of weird autoimmune disorder that is somehow eating my muscles, but somehow I doubt that anything significant has been missed for the last two years.

So yes, it can get very discouraging especially as I often seem to forget just how sick I was just back in November 2018 and that I am really doing significantly better now than I was back then, although I am so far away from how I would like to be. But I would be remiss if I didn’t mention that in the midst of the emotional turmoil, there is no doubt that my faith gives me great support. Whether you are a person of faith or not I hope that you find comfort and encouragement today form somewhere no matter what situation you are facing.

Rehab – how hard to push?

This is perhaps the 64 million dollar question. But it’s what’s burning into my mind at the moment. These words were written two years ago and they describe my current situation remarkably well too. I wrote more about this more recently here:

Dealing with the threefold tyranny of a damaged immune system (Infections, Inflammation, Fatigue)

With fatigue and particularly the dreadful muscle fatigue which for some of us is associated with legs feeling like lead weights, and muscle pains that are exacerbated by any exercise, how do we know how hard to push ourselves?

This dilemma about pushing ourselves definitely applies to limited mental and emotional energy too but I’ll focus mostly here on physical effort. 

On the one hand your body says “Rest!” People sometimes helpfully say things “listen to your body!” What if your body says “do nothing!” What if getting out of bed feels like a huge effort, and the more you walk about the worse your pain and exhaustion becomes? 

For me personally the last two years if I had just listened to my body I don’t think I would have got out of bed once!

Logically we feel that we can’t just listen to our bodies as the less we do the weaker we will get for sure. And so despite the feeling that we are being dragged down and down, most of us don’t just give in to that pull, and so we fight it. 

And it’s logical to fight it. 

Without strength building exercises I’m sure I would never have got out of bed when I was at my worst. And I guess I should be encouraged that I’m doing a lot better now than I was then. 

But progress is slow and seems to be associated with some weeks where I’m heading backwards not forwards. 

Whatever else is going on with us our muscles are still going to get stronger the more we use them and weaker the more we don’t. 

And so we push. 

But how hard is too hard?

It does definitely seem like we can push too hard and set ourselves back. And lately I’m wondering if that’s what I’ve been doing. Though the critical voice in my head sometimes wonders if the opposite is the case: what if I’m not pushing myself hard enough?

Should we push so hard that we feel muscle aches and pains all the time? Or what if we push so hard some days that the muscle aches and pains cause us to not be able to even sleep?

And at what point should muscle pain and weakness actually lead us to push for further investigations to rule other conditions out?

I know for me for example that when I have an infection I do always feel weaker and less able to walk. Sometimes a few days of struggling more physically are actually an early warning sign of an infection. 

So perhaps some of us have low grade infections going on much more often than we realise and maybe that’s contributing to some of our fatigue. 

And of course things like vitamin depletion can make a difference. As can an allergic response. I don’t think it helps if we have constant nasal allergic response as I do which is helped but not eliminated by the nasal wash, nasal steroids and topical antihistamine that I take, alongside a double dose of oral antihistamine that reduces the intensity but doesn’t demolish the itching all over my body that has been a constant companion since my diagnosis. 

My immune system sure doesn’t feel right and I know that’s true for many of you. It seems that not only do many of us not have good ability to fight off infection, for some of us the immune system seems to become more heightened towards allergic responses, but there is also another possibility we don’t speak so much of on here. That is the way our weakened immune systems can also turn against our own bodies. We are aware of idiopathic thrombocytopenia and anaemia. But there are other ways this can affect us too. 

Our immune systems sometimes seem to lose the ability to figure out what to fight. So even as they can’t be bothered to attach a bacteria or virus, they decide pollen or dust mites or whatever else is an enemy to fight vigorously, and can even sometimes fight our own cells. 

My latest thought centres in my own case on the possibility of an auto immune element to my muscle weakness and pain. 

We are much more prone to autoimmune problems and I know I do already have one minor one which predates my CLL. For sure like many of us my immune system is mucked up 

The last few weeks I’ve felt things getting worse not better. There’s been not only the worsening of muscle pain, but the return of joint pains (so far only mild). Interestingly during chemo my joint pains completely disappeared and my muscle pains were less. Whether that was because I didn’t push myself as much is less clear to me. But in my head anyway I’m building up the idea that FCR may have also suppressed some kind of autoimmune process going on. 

So here’s the nub of the question: how do we know how hard to push ourselves? If you have any answers let me know!

MRD Results! – Four in two million!

This is what I wrote when I got my post treatment results.

 Not only is my blood lymphocyte count continuing to be consistently below 1 (thousand) which is exactly where you want it to be post treatment, but also on the bone marrow I am Minimal Residual Disease (MRD) undetectable or negative. Ie the true rate of residual CLL cells in my bone marrow is estimated at less than 1 in 10,000 cells. 

My CT also revealed near total resolution of my lymphadenopathy with just a handful of nodes being slightly over the cut off but only on one dimension, and my spleen being bang on the upper limit of normal having shrunk significantly so the CT was reported as “essentially a complete response”

So I am walking proof that FCR can indeed make a difference to people who are unmutated. If I had this result and was mutated I’d be hoping for a very long remission at this point and would have a great chance of it. It is true however that I’m not as likely to have such a long remission despite these results due to my marker status 

So yes I am happy about these results. But I’m also aware this is NOT the end of the journey for me.

So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. 

He explained that one of the tests that had been done in my bone marrow had a sensitivity of 1 in 100,000. He explains that they actually look at 2 MILLION cells. In my case just 4 of them had a signal that was suspicious of CLL. But unless they had 20 such signals they aren’t even able to fully confirm those 4 cells were in fact cancerous. 

And so what this test can say in my case is that less than 1 in 100,000 of my bone marrow cells are CLL cells.

He seems quite excited about this MRD test in general and explained that he believes that some people who reach this particular position are in fact cured. 

He showed me data apparently in this paper but not the abstract that showed that people who were unmutated in IGHV like me but reached MRDU on FCR nonetheless, seemed to be likely to do well in terms of managing to stay off treatment. At six years of follow up around 2/3rds of people in that group still hadn’t required further treatment for their CLL. 

He explained that for me at least FCR appears to have shown a very positive effect. Repeated MRD texting even if only done on blood (this will be done annually as part of FLAIR) would be likely to show a change a significant time before any elevation of lymphocyte count or node growth etc. 

And here’s a thing. In people who are MUTATED there is data from these serial MRD tests which are so much more sensitive than just doing a blood count that since the abnormality appears the test in some cases years before the actual relapse is visible, he believes some of them are cured. In other words some people get to a sustained period where no disease is found with this high degree of sensitivity in the blood. And after a certain period of time it becomes safe to say that they are actually CURED in his view. 

There is less data connected to unmutated IGHV but the same might even hold true there if many years go by and I’m still MRD undetectable then that might even mean I’d never get a relapse again. 

But a ⅔ chance of at this point getting to six years without needing further treatment is pretty good news really! And as I say if I was mutated that figure would be even higher. 

You can see now why they are getting so excited about the MRD status’s we we seeing now in venetoclax since it would seem likely they will follow similar patterns seen with FCR induced MRD-U over the next few years. 

As I am in the trial I will be able to have repeated MRD tests. Studies suggest it is on average two years after the MRD test begins to detect cancer cells that the clinical disease returns. 

One thing I didn’t write about at the time in this diary which was made available on one of the locked forums was that I actually found the period of time immediately following being told I was in remission the hardest time to deal with emotionally up to that point. This might sound strange but it was a kind of delayed shock, coupled with a sense of abandonment, and fear that if I now had the lowest number of CLL cells I would ever have in the future, then the fact my fatigue had not sufficiently improved presumably meant I was going to have live with it for ever.

This is the end of the treatment diary but if you would like to read more about why remission can sometimes be a very hard time emotionally then I have written an article about that here:

Why “remission” can feel like a crushing blow