Two years ago this week I started chemotherapy as part of the FLAIR trial. Here I share my diary from that time. Please turn away if you are the sort of person for whom reading other people’s stories will increase your anxiety. But spoiler alert: FCR clearly worked for me as two years on I continue to be in remission.

The Story So Far

The Day Leukaemia Changed My Life

Two years ago I started FCR Chemotherapy

FCR Chemotherapy diary – Treatment Looms

Day One

On the first day of treatment almost exactly two years ago, I decided to record a blow by blow account of how the day went.

5am. Wake fifteen minutes before my alarm. As usual thus is double edged. Will I choose to be sad about the extra time in bed asleep missed? Or shall I be grateful that I can now have a bath before the absurdly early pick up I’ve got booked? I chose the second. If I’m tired later I can always sleep in the bed they are going to give me to have my chemo in.

This way hopefully the toxins I am assuming are what make my muscles sore all the time will have a chance to dissipate. Certainly the legs are never more comfortable than after a good long soak or massage. Best to get the blood flowing one way or another. 

The bath also helped my back pain. Knowing I have another tumor (haemangioma) in one of my vertebra even tho it is benign is far from welcome. The pain is bad enough that if I wasn’t about to start chemo I’d be rushing to the nearest orthopedic surgeon to DO SOMETHING. So I really hope that Nathwani my CLL expert was right in his tentative theory that it might be the combination of the CLL cells which are in every bone of our bodies and the benign tumor that are causing my pain. If so chemo may help it. If not I guess I’ve got half a year to wait before I can do anything definitive. Unless of course my vertebra actually collapses which is what the pain feels like.

Anyway enough of that. 

Gratefulness. That’s key always. 

I’m glad I got this illness now and not five or ten years ago when there were far fewer treatments. 

I’m glad I am getting a lift from hospital transport. 

I’m glad for the lovely building I will be in. 

I’m glad for the bed they will give me.

I’m glad I will have caring nurses checking up on me all day. 

I’m glad that I may get an opportunity to speak kindly to someone else today and make their experience a little better. 

I’m glad that I don’t have to worry about swallowing those poisoness pills till much later today. 

I’m glad I don’t face this alone that I’ve got family, friends, and many people who are paid to support me through this. 

I’m glad i don’t have to worry about insurance or a co pay. 

I’m glad I am being treated as a World centre for these kinds of conditions here at UCL. These guys are pros. Time to relax and let them do their thing. 

6am. Hospital transport on time. Charming helpful compassionate driver who put me in the middle in a wheelchair so i had enough head room in his van which really isn’t designed for tall people. Turns out the suspension is not as bone rattling as their new ambulances so that’s good. 

After chatting for a few minutes made my excuses and put my Bluetooth headphones on (one of my favorite possessions) and started to listen to my “Hope Worship” playlist which I joked with one of my other drivers I use when I’m not feeling very Christian to make me Christian again! Actually that’s not really a joke as that’s exactly what it does for me.

Later on at some point I’ll probably switch to my “calm tunes” list which is made up of no lyric, slow paced, chilled music from classical, jazz, and even my son’s newly released electronic album. Both playlists offer great anti anxiety effects. You can look them up on Spotify if you are interested.

07:30. Arrived 30 mins early to an empty room. Just as well I’m not a blubbering mess at the moment. That might come later but probably not before they bring me the tablets which will be not for many hours yet. One step at a time. Looking forward to being allowed to lie down in my bed in a few minutes.

08:20 Have been checked in and apparently they were expecting me at 09:30 not 08:30! Not sure if that was me writing it down wrong or what. Hopefully I can delay tomorrow’s hospital transport. Have a wristband on and been given a comfy seat to sit in. Always knew they’d be a lot of waiting today. Just perhaps oddly glad that I don’t have anyone with me as non patients are not so used to waiting. When you have previously been an inpatient you are just glad to know you will be going home at some point today rather than staying the night.

I’m quite happy to sit around and fiddle or my phone or just chill. The longer I can wait before facing those tablets (which will be the last thing) the better.

11am. So turns out there was a communication mix up. It happens at the best of hospitals. I was told that I should come in today, but the chemo department was told I’d be in yesterday and today. I never got a letter or email or text about the appointment I was told verbally.

So because I failed to show up yesterday my rituximab isn’t ready yet. So as everyone who has ever had chemo has warned there’s a lot of waiting that goes on! They are sorting me out with a slot for tomorrow for rituximab part two and hopefully part one will be up and running soon. 

12:00. I have a bed. One further step. It’s all good. Now I can rest and rest my painful back. I really don’t mind the waiting but some people would be driven nuts I’m sure. 

1pm. After eating a nice curry for lunch the doctor arrived. I’d mentioned to the nurse that I was in quite a bit of pain from that dodgy vertebra in my back (haamangioma see my previous posts). This had been made worse by sitting in a hard chair. Doctor offered me morphine and decided he wanted an X-ray done to ensure I hadn’t somehow developed a fracture in it. They can sometimes cause the vertebra to collapse.

1:45pm. X-ray done. Flush and IV hydrocortisone given (not able to tolerate piriton). Also some morphine for my back pain. So hopefully I’ll get a double high.

2:10. pm Rituximab finally flowing. For first hour and a bit no issues except mild itching. 

3:30 pm Episode of chest tightness. Not severe but definitely enough to sit up and cough a fair bit. Rituximab stopped. More hydrocortisone. Puffs of my asthma inhaler. Symptoms resolving so will restart shortly at an even slower rate. Blood pressure etc have all been normal. Doctor very reassuring. Apparently this is quite common and perhaps as I have pre-existing allergies it makes me more susceptible. This is why it’s so important to be treated by doctors and nurses who know what they are doing. At no point have I felt anything other than safe and well looked after. 

5:20.pm Don’t remember for how long but it’s been flowing for a while now and don’t feel too bad. Bit of a headache. Faintest hint of tightness in the chest but really nothing much. Also some mild nausea. Been given ondansetron and domperidome to get ready for the big moment later when I’ll take my chemo tabs if I can conquer my fear. What is it I say to my kids “Bravery isn’t the absence of fear. It’s the decision something else is more important than the fear.”

7:20 pm managing to tolerate Rituximab better. Still have an hour to go. Clearly especially for your first day don’t expect it to go quickly. And having woken up at five am this is a LONG day even tho I’ve spent a lot of it lying down. I’m really not stressed about the time tho. It will go as slow as it needs to. And I can chill and listen to music and rest here just as easily as at home. 

08:30pm. Nurse helped dish out the dreaded chemo pills and encouraged me to take them. I am not going to lie and pretend it was easy. Looking at those 12 tablets which are so toxic you aren’t meant to touch them and plucking up the courage to swallow them was very hard for me. I’m sure for a lot of people it’s not like this. But I found myself crying for a while. I felt as tho I literally couldn’t swallow them. My arm refused to reach out and pick them up. I worried they would burn my mouth or my gullet or get stuck on the way down. All irrational thoughts. But isn’t it quite unnatural to swallow poison. 

In the end the only thing that made me do it was thinking of my family and how I want to be around for them. 

I’m not sure if it’s going to get any easier tomorrow or as the months go on. Maybe it willl depend on how nauseous I feel 

09 pm Still a bit of tachycardia but blood presure etc otherwise fine. Drip finished and disconnected. Hospital transport was waiting for me at least. Should be home by 10pm. 

11:30 pm now I’m at home and the effects of the rituximab infusion has gone I’m feeling that steroid high we often get. Didn’t feel it earlier. But despite some more morphine for my back and a sleeping tablet not sure if I’m going to be able to sleep at all before the transport comes at 6am!

Day Two 

07:30. On my way in again. Having been picked up about 06:30. Having thought I would not get any sleep a combination of my bath, the passage of a bit of time, my morphine, and my sleeping tablet eventually did their work and I was asleep for a whole 5 hours. 

I also had a low grade temp 37.3 for a little while before bed I recently bought the more accurate Braun in ear thermometer from Amazon and so having confidence in that reading reassured me and I didn’t call the hospital but decided to try and sleep 

I had constant tachycardia (fast heart rate) for several hours yesterday as measured by my Apple Watch (other heart monitoring devices are also available and having one is sure reassuring to me) which began in the last couple of hours of the Rituximab drip. 

So with that the fact that my BP did drop a bit at one point, during infusion and my chest tightness episode. l am not expecting a particularly fast day today. In theory they will try and speed up the drip today but somehow I doubt it will be possible to do that Some people do fine others are less fortunate.

My understanding is that these symptoms are not typically caused by a true allergic reaction Rather as the cells are stimulated and die because of the drug there is a citokine release, too much and I guess it is how you end up with tumor lysyis syndrome . So I really don’t mind if they go really slow today.

In fact this morning I’m a little itchy my chest is a little tight, and I have some intermittent tachycardia. And we haven’t started yet! There will still be drug in my system. In fact apparently rituximab stays in your system for months after FCR is finished still doing its job of wiping out lymphocytes. 

So I probably won’t be as detailed today since hopefully it won’t be too eventful!

I didn’t actually watch any videos or read more than about 30 mins. But my music (the Calm tunes and Hope Worship playlists I have shared to Spotify) really helped. I didn’t feel like much else tho it probably won’t surprise you I engaged in conversations with the nurses and one or two patients!

10:00 Hydrocortisone resolved the allergy symptoms and they’ve now put it up again. I’m not in a rush and nor are they. 

11:00 Bad muscle cramps in my feet that just won’t go away. Morphine regularly for back and is helping that but not the spasms. Feel warm but not temp. BP gone up a bit which is the opposite to normal with this drip. Trust me to be different. Quite talkative due to the steroids. But also tired. It’s an odd feeling when you feel like talking and resting at the same time. 

12 Attempts to speed up the rate led to pretty bad itching which was worse than yesterday and chest tightness which wasn’t as bad (go figure!). Had a break and they’ve gone back to a slower rate. Also feeling hot tho not actually got a temp. BP slightly up not down. Apparently can go either way. 

Also got nauseous and was retching a bit. Realized I was due one of my anti sickness pills and guess what taking it worked a lot tho I still feel a bit queasy and food is of no interest to me. Only thing I could face eating since starting the drip yesterday was two fried eggs bizarrely which I ate last night at home. Looking at the menu for lunch I couldn’t face anything either but know I’m going to have to eat at least something with my second allopurinol. Figuring out when to take which tablets and which need to be before or with food is a mission. Making either a paper chart or in my case even better using a free medication reminder app called “Round” is essential. Round can even cope with my Monday wednesday Friday dosing of cotrimozazole. 

13:00 Doctor reviewed me re the cramps I have been feeling in my feet. Nurses had sent off the bloods. They want to check U and E and Calcium Etc to make sure I’ve not got proper tumor lysis going on. Of course we want SOME tumor lysis just not too much. Anyway the electrolytes aren’t back yet but check out the FBC. The doc only quoted the white blood count to me but from 109,000 on Tuesday it was 47,000 today! So considering the vast majority of Tuesday’s was lymphocytes that’s a whole lot of tumor we have killed already when I’ve only had a tiny dose of Rituximab yesterday, hardly any yet today, and one dose of oral F and C yesterday. Seeing that drop already makes the relatively minor issues I’m feeling MORE than worth it!

I just wish I could drink a beer to celebrate but with how weird I’m feeling perhaps not. The x ray didn’t show any obvious fracture or vertebral collapse so that’s good news too. We are still waiting for the calcium and electrolytes etc. 

2pm. Managed to eat a bit of scrambled egg (not bad menu selection here at costa Del UCL! Oddly found the peas were really appetizing. I could have eaten a whole plate full. But I tried to eat a chip and it just made me feel odd. Maybe this is what pregnancy cravings are like! 

4pm We have finished rituximab without too much more trouble. But the urea and creatine from the blood they took earlier have gone up. In fact my creatinine has doubled. So there’s a bit of concern about potential tumor lysis syndrome. Things like my potassium and calcium are fine tho. 

Doctor has asked nurse to flush my system though by giving me a fair bit of IV saline. He will then review me. Not sure if they may do another test today or what. Interestingly the cramps I was having earlier are much better now. So it’s very possible that we are concerned about the state of affairs three hours ago and it could already be on the mend. It’s best I guess to think of tumor lysis syndrome as on a spectrum. A lot of cells have died so it’s no wonder my kidneys are complaining a bit at all the extra work being thrown at them. And yes before you ask I have been drinking plenty!

6pm observations and symptoms have largely settled down except I feel rather hot. But I think he air con gets turned off at five as even the nurses say they feel hot in the evenings here! So having had the fluid they are going to let me go and bring be back on Monday for a repeat blood test. 

All that is left is for me to take those F and C tablets before they let me home. I just basically don’t think about it all day but when I do think about it the dread comes. I think we all have a lot of free flowing anxiety about everything. And sometimes it just looks around until it finds a home. For me that home is swallowing pills that are so toxic you aren’t allowed to touch them with your hands! 

But one little tip I got from somewhere which I’ve prooved the worth of is take your anti sickness pills when they are due don’t wait till you feel sick. Although I’m not that interested in food I’ve only really felt properly nauseous a couple of times and each time it was about time I took the sickness tablet. And it quickly resolved. I’m on two different tablets and I will take them both every day on schedule. I’ve not actually vomited fortunately. Though in my mind that will happen when I swallow tonight’s F and C! 

So grateful for the nurses and doctors here. Makes a huge difference being somewhere you feel safe and with doctors who have seen it all before. I’ve seen a lymphoma/leukaemia registrar several times over the last two days. And always see them if I’m in A and E for any reason. Actually when you pick a place to look after your CLL having one with a good non consultant service who are there 24/7 is really important and why I’d not want to see a consultant who worked essentially on their own out of an office. 

I know I can pick up the phone at any point over the weekend 24/7 and speak to a specialist nurse immediately. And can come in and be properly reviewed if there are concerns. That gives such peace of mind. 

But hopefully I’ll be fine till Monday. Apart from the daily fear busting moment when I have to swallow the FC pills. It’s amazing how much of an issue that is to me. I was so happy talking to the nurse about my huge drop in WBC when she mentioned that we’d need me to take the chemo pills later and my face went from looking like I was at a party to having been just bereaved instantly. 

So time to tell myself whatever I need to to force myself to take the pills. The nurse will help me get over this hump again like they did yesterday I’m sure. 

7:15 pm. Ok. Can’t resist one more update to proudly say I managed to swallow the pills. And I’m in my Hosptal transport a whole two hours earlier than yesterday!

Happy that I don’t live alone. Wouldn’t like to spend the next few days on my own!

Days Three to Five – swallowing poison

I hope the next few paragraphs and for that matter my previous diary entries don’t read a bit negative. It’s inevitable that I’m likely to notice and record the issues rather than that so far I’m relatively unscathed. Also, even the side effects mentioned are all massively overshadowed and outweighed by the brilliant news today on the blood count side. I had two days at home over the weekend, then due to the concern about potential tumor lysis they brought be back to do bloods, and it did mean I got to take the last tablets back in hospital.

My white blood cell count which was 109,000 before treatment began is on day five just 4,000! And the lymphocytes which were 95,000 are now just 1,000!

Whatever we say about the great FCR vs ibrutinib debate if I’d been randomized to ibrutinib by now if there had been any change at all my counts would have gone up. Of course that’s not much of an indication of long term outcomes, but it sure looks good and gives hope that my CLL will respond well to FCR. 

In fact “chemo responsive” sounds too neutral a phrase for the obliteration that’s going on in my body. Quite probably part of the reason for some of my symptoms is precisely just how fast the chemo is killing my CLL cells. That’s a LOT of cells dying and releasing toxic substances very quickly. No wonder I’ve felt a bit rough!

So read the following with the context of real joy that I’m feeling for this amazing result after just one cycle, and from blood taken before I had even had the final dose of F and C. The nurse said I may never have to swallow them again, as we can discuss the idea of switching to IV in clinic. 

After arriving home quite late on Friday night I couldn’t sleep till 4am on Saturday am! This was presumably due to all the steroids I took (I can’t take piriton as I respond badly to it) Once I stopped the rituximab I did get something of a steroid buzz which is an old friend of mine having had that around both of my throat operations. Even a sleeping tablet didn’t counteract the effect. 

When I did finally sleep and then wake I had a mild headache which came and went over Saturday, Sunday and Monday. 

I’ve also felt a bit queezy and often had a mild temperature but never more than 37.3C which I kept repeating because I felt sweaty. I did speak to the 24/hr helpline at one point and they explained it’s not uncommon to have a mild temperature as part of an immune reaction to rituximab. I’ve noticed it much less today (Monday). 

I was told on Friday that it turns out that most rituximab infusion reactions are now believed not to be truly an allergic reaction. The true allergic reactions actually start almost as soon as you start the infusion. Reactions that happen later in the infusion are apparently usually more about cytokine release as your system is stimulated by rituximab as it does it’s job. The symptoms are similar but the cause is different. 

It’s easy to forget that rituximab hangs around in your system for months after even one treatment doing its job of killing cells. 

So at the beginning I guess if you have a lot of cells and they are especially sensitive you may get some activation and similar symptoms following the infusion that are more commonly seen during it. 

Not surprisingly perhaps given my lack of sleep I spent most of Saturday and Sunday snoozing or just resting in bed. My mobility and energy levels are significantly lower than they were previous to treatment and they were pretty low then. 

I have become really disinterested in food over these past three days. I’ve eaten egg, peas, porridge and as far as I can recall not a lot else. Most of the foods I used to love just don’t appeal to me now any more. 

Nausea was worse around the times I was due the next medicine, but has gradually got worse over the three days. Today they have offered an additional treatment. So if you are on chemo do ask if you are struggling. I’m very glad not to have actually vomited though. 

The other issue I’ve had is with Bowels not working which is largely due to the morphine I’m taking for my back pain. So today we have tweaked my laxatives to hopefully remedy that. 

Despite my poor energy levels I have still forced myself to do the strength building exercises from the Physio. I’ve managed that even on the days I went to the hospital. She wants me to try to at least maintain muscle strength even if not stamina. 

I’ve also found having a bath really helped relax me and also ease the recurrent muscle aches in my legs, which I have had for a while now. 

Swallowing the tablets hasn’t got easier. I now get anticipatory nausea with a knot appearing in my stomach an hour before they are due. 

I have a strange burning feeling in mouth and gullet afterwards too. I’d assumed that was purely psychological, like the sensation I often have that they’ve stuck. But the doctor I saw today didn’t help by saying chemo tablets can actually burn! 

I think if I hadn’t had a particularly caring nurse at the hospital today I would not have managed to do it. I certainly didn’t want to delay the treatment till I got home! Nice to be heading home with hopefully no hospital appointment till next Tuesday. Unless as the nurse perhaps slightly ominously put it “I call them…” I have been musing about whether or not the rapid reduction in my counts will also indicate a deep dip in my healthy cells. I guess we will find out.

Anyway that’s enough of my wittering. The main thing is I’m FINISHED CYLE ONE or at least the active treatment bit. I sure wish I felt able to give myself have some kind of celebration! But that would involve eating, going out, and maybe even drinking a bit of alcohol, none of which I feel like doing. So a “yay!” will have to do. 

To be continued…

FCR Treatment Diary – an unexpected hospital admission