Twelve Rounds with Folfirinox

The Chemotherapy Diaries

Me and My Siblings – Alfie, Rebecca, Freddie, Josie, Greg, Me; I’m Apparently Doing My Best Hannibal Impression

It has been a few weeks since my twelfth and final session of the Folfirinox chemotherapy. That feels like a suitable enough period to reflect on the whole experience before finally drawing a line under it. Whether that line is temporary or not, I’m not sure. I believe I’m likely to need more chemotherapy in the future, but not sure whether it will be Folfirinox or something else. If it was, I wouldn’t feel too excited about it.

Despite all of the experience I now have in tolerating Folfirinox, I never got to a stage where I looked forward to the treatment days. No one looks forward to receiving chemotherapy, probably, but I seemed to get more and more resentful of it as the weeks went by. In the first session, I was extremely scared, and then in the middle sessions I was grateful, knowing it was necessary, which made it feel better. By the final third, I was sick of Folfirinox. Getting an infection in the final cycle and having to go to the hospital twice in one day was the final straw. Chemotherapy and I had officially fallen out. By baking the nurses a different cake every treatment day, I provided an aspect of the process that I did look forward to at least. It was a useful distraction in the two-week cycle.

I’d usually trial the bake a few times in the week before, to get it to a place where I was happy I understood how to bake it well, then make it for them on the Friday before treatment, which was always on the Saturday. Each time I walked onto the ward, I’d casually hand them the cake and make some comment about it, slightly negging myself to give the illusion of modesty. In my head I’d be screaming “I KNOW THAT CAKE IS GOOD AS I HAVE FED IT TO MY ENTIRE FAMILY, ALL OF MY FRIENDS AND MY MUM’S DOG WENT TO GREAT EFFORT TO STEAL THE FINAL THIRD OFF THE KITCHEN WORKTOP!!!!!” The final point doesn’t speak of the quality of the baking to be fair. You could take some rotting lasagne from 5 months ago and leave it on the kitchen side, and he would do everything in his power to steal it. It’s not about the food for him, it’s about the thrill.

All humour aside, it really wasn’t as bad as I thought it would be. That isn’t to say it was fine either. My expectations of chemotherapy were sky high, in a negative way. I expected it to be absolute hell. At times, I probably would have argued that it was hell. There was a particularly bad cycle where my mouth was so full of ulcers that I couldn’t hold my tongue in its natural place in my mouth. To make matters worse, I then got some of the worst diarrhoea that I’d experienced up until that point…in my life. The combination of those things absolutely exhausted me. I remember laying in my bed, feeling more uncomfortable in my own skin than I had ever been. It will probably remain the most vivid memory I have of the entire chemotherapy experience. During that time, I told Anna that I “couldn’t keep doing this.” I wasn’t referring to the initial twelve cycles that I was engaged in, but the notion that I may have to repeat chemotherapy over and over again.

My oncologist at The Christie told me that chemotherapy may be used several times in my case, as it may take several different ‘techniques’ to get my tumour in a place that it can be operated on. The issue is that pancreatic cancer is extremely aggressive, meaning that it spreads around the body quickly relative to other cancers. During the break from chemotherapy, when other techniques are being applied, it gives the cancer an opportunity to spread ‘micro-cancers’ around the body via the bloodstream, increasing the likelihood of secondary tumours (or metastasis) growing in other locations. Chemotherapy helps to kill these micro-cancers, stopping them from getting around the body and taking hold elsewhere.

I’ve read more on how cancerous tumours operate recently in the Anticancer book and it is incredibly interesting. Apparently, the primary tumour secretes a chemical called angiostatin. That chemical stops any metastasis in the body from becoming the primary tumour; even cancer is an egomaniac, obsessed with maintaining its heightened social status among its peers. It isn’t entirely different from some of us humans. This process is responsible for the development of other tumours post-surgery. The primary tumour is removed in surgery, ‘curing’ the individual. Microcancers may remain in the blood, though, and may even have a footing in other sites in the body. Without the primary tumour secreting angiostatin, the other sites are unabated and can become the primary site of a new cancer. I believe this to be true, if I understood it all properly, which I probably didn’t. It is extremely interesting whether I understood it all properly or not – I can see why it is of interest to people who work in the medical profession. The book was also published in 2008 so who knows if new information has come out, or new techniques for stopping this from occurring have been established. I assume the use of mop-up chemotherapy helps to stop this happening in many cases.

A quick Google of Folrifinox tells you all you need to know about it as a treatment. Pancreatic Cancer Action Network’s website states that it is ‘known to be a particularly powerful chemotherapy regimen and can cause severe side effects in patients’. It goes on to talk about a clinical trial of the chemotherapy, staying that ‘The patients in this trial received a modified version of FOLFIRINOX, which was intended to lessen some of the side effects. Still, more than 75 percent of patients who received adjuvant mFOLFIRINOX [modified Folfiriniox] in the clinical trial experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dosage was modified’. To paraphrase the above: Folfirinox is really fucking strong and if you are put on it you are VERY LIKELY to get gross side effects, like pooing blood and developing sores the size of islands on your tongue. To put it in terms that the average person may relate to more: Folfirinox is like drinking 6 pints of a beer that you hadn’t heard of, only to realise it is actually 46% and not 4.6%, but noticing this too late to do anything about what is about to happen to you. The key difference? Drinking beer probably won’t save your life; Folfirinox just might, if you’re lucky. I love the way that they state ‘more than 75 percent of patients…experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dose was modified’, as if this is meant to make you feel good about the treatment. “It’s ok, only OVER THREE QUARTERS of the participants experienced SEVERE side effects – but you’ll probably be alright. Good luck with your treatment, sir, we can always reduce it if we need to but it might not work as well. Why have you gone so white? And why is vomit coming out of your eyes? Have you started treatment already? That’s a common side effect of it if so,” I imagine the oncologist saying, as he welcomed the first patient for treatment after Folfirinox was approved for use.

In my experience, the most typical reaction from doctors/nurses/anyone who understands anything about chemotherapy when you say you’re on Folfirinox ranges from despair to awestruck. It is worth noting that these are the extremes of reactions and most don’t fall into these categories (the former is a total exaggeration; the latter is likely to be my own ego speaking and not based on a reaction from any walking, talking, breathing human). “That’s very toxic stuff,” or “You look amazing!” are the most common things said in response. For that reason, it is mandatory to be as smug as possible whilst being treated with Folfirinox; you may as well enjoy the very small list of benefits that come with being on it. My recommended responses are as follows:

Modest: “It isn’t that bad once you learn your cycle”

Coy: “Yeah, it’s been a little tough”

Forcing Sympathy: “It’s been incredibly difficult”

Brave: “I’m just keeping my head high and fighting through it”

Demanding Sympathy: “People who haven’t been on it just don’t understand”

Pushing It Too Far: “It’s the hardest thing that any individual has ever done, EVER”

I’m sure there are other responses outside of the above, but they’re a good starting point if you’re new to Folfirinox. Just play around with the wording and make it your own. If you want extra sympathy, really lean into those nasty symptoms – of which there are many.

For me, the worst symptoms (as mentioned previously) were mouth ulcers, diarrhoea and fatigue. Nausea was a problem on treatment day, and sometimes for a few days after, but generally it went quite quickly for me. The anti-nausea medication that the hospital give you is very effective. The same applies for the anti-diarrhoea that you are given. For some reason I thought I was doing a good thing by trying to not use the anti-diarrhoea until I decided that things were going too far. By about cycle 8 I had dropped this ‘heroic’ stance and realised that just taking the medication as soon as you had loose stools was far better. You’re only spiting yourself if you try to hold out, even if you think it is for good reason (mine was that I was “taking enough tablets”). The longer the diarrhoea lasts, the more nutrients you lose. It also results in extreme exhaustion. It just isn’t worth it.

For mouth ulcers, I really didn’t find a way to avoid them completely. I had to learn how to treat them better, which I covered in a previous post. Since writing this, I also started to swirl my mouth out with Milk of Magnesium; I’m not sure if it works well, but I was willing to try anything. The key one for me was applying the Iglu product early on. When I didn’t, the ulcers would get more irritated during eating and it would make them far more painful. In the last cycle, I was eating a sandwich when I realised there was red stuff all over the bread after I had taken a bite. I looked in the mirror and realised that the seeds from the bread had torn the ulcers apart whilst I was chewing. My teeth were all stained red with blood. You get so used to having pain in your mouth that it becomes difficult to know when something has worsened. The Iglu helps to prevent issues like this, so long as you consistently apply it. It doesn’t taste the best and it gets stuck to your teeth, but it’s a small price to pay if they heal quicker and are less painful.

Another, and more generic symptom of chemotherapy, is neuropathy. I say it is generic as it is not specific to Folfirinox, although I guess none of these symptoms only apply to Folfirinox but whatever, I stand by what I’ve written. It is where the nerve endings are damaged and you lose feeling or have a strange feeling of pins and needles. I believe it only occurs in the extremities of your body. It can take months to recover from, even after finishing treatment. Sometimes it never goes away and the damage is permanent. I have it in the end of my toes and fingers. The oncologist said that because it happened quite late in my cycle, he thinks I should recover fully, but it is currently worse than ever. I have a tingle as if I’ve slept on them all night, and woken up with hardly any feeling. It really does feel like the blood flow is being restricted sometimes. I’ve found the problems to vary between having neuropathy in my fingers vs my toes.

Having little feeling in my toes is annoying whilst running as I kick the floor a lot more regularly. My slippers also fall off when I’m walking up the stairs; I used to have to bend my toes a bit to keep them on as I climbed the stairs. They are slip-ons so fit quite loosely. Currently, I can’t tell if I am bending my toes enough whilst going upstairs, so they always fall off my feet. The biggest frustration with my fingers is completing tasks that require a level of feeling in your fingertips. For example, doing the buttons up on a shirt is really hard now. They’re small things that are impacted, but it isn’t a small thing to think that you may never go back to feeling ‘normal’ in those areas. It sounds likely that I will, but it has only worsened so far. Hopefully they will gradually get better, as more time passes from finishing treatment.

The headline of the treatment was that it reduced my tumour size from 3.2 to 2.1. All of this reduction came in the first 7 sessions. As the oncologist relayed this information to me during the mid-treatment scan result meeting, I had to scratch my head. I’d never been told how big my tumour was before. The figures didn’t make sense to me. “Millimetres are surely too small…it can’t be in meters, though. Does she mean centimetres?” My brain was trying to figure out how something so small could cause such a problem. After a few seconds, I asked “2.1 centimetres is that?” She confirmed. My naive non-medical brain was screaming “2.1 centimetres? Are these people serious? It’s absolutely tiny! JUST GET IT OUT OF ME!!” I knew it wasn’t that easy, but it really should be. 2.1cm is pathetic. If it ends up killing me, I’m going to be more indignant than sad on my deathbed. “2.1cm… that’s probably smaller than the circumference of a polo mint,” I’d say with my final breath. I wouldn’t regret it either.

There wasn’t any better news at the final scan. I’d already had my good news apparently. We went into the meeting hoping that the oncologist would tell us that surgery was now a foregone conclusion, but it wasn’t to be. “It is still not clear from the scan whether the tumour can be removed or not. The case is being passed to the team of surgeons to review and decide what they want to do next,” the oncologist said. He was living up to his opening promise of “not having any bad news” for me, but only just. ‘Not bad news’ feels like a pretty low bar to set as a standard. I might start measuring everything I do in life against it. “How was your week, Dan?” Someone may ask me in a few months. “It was not quite bad,” I’d reply with a half-smile to emphasise the uncertainty. I’m sure that response would be welcomed with an absent glance as they got their phone out and chose to read about whatever awful thing was going on in the world as an alternative to hearing about my ‘not quite bad’ week. At least the news commits to being about negative things all the time. They’d probably start ignoring me after a while – it’s pretty wearing dealing with that level of indifference.

I have to give credit to Folfirinox here. It did manage to shrink my tumour by around a third. If someone had offered me that outcome five minutes after being diagnosed in the hospital, I’d have cried myself dry. It’s good to remind myself of that when I start to feel disappointed in it. Ending the treatment on a high would have been great, with another resounding success in terms of further shrinkage, but it still has done a good job. My tumour markers also came right down, which is a very positive sign. Although it is a gruelling treatment regime, it clearly does work well. If the chemotherapy was only in clinical trials in 2018, I’m sure the improvements in statistics haven’t started being reflected yet in terms of survival rates etc. That makes me feel somewhat better about how bleak the statistics are, even if I don’t know it to be true.

To finish this, I will be more serious. If you are currently on Folfirinox, or any other chemotherapy, I want to say that you really are amazing. I’ve only got experience of the treatment I was on, but it was tough. Really tough at times. I know I have said in this post that it wasn’t as bad blah blah, but your standard for ‘bad’ quickly changes when you are diagnosed with cancer. You become used to living with a level of pain, uncertainty and discomfort that no one should have to face in their mortal lives. Definitely not at 29, though I am nowhere near the youngest person I saw in hospital receiving treatment. That is really hard to accept – but cancer doesn’t care whether you accept it, whether it is moral and who it is growing inside of. It’s almost pointless to evaluate it in such terms, but it’s impossible to not.

I’ve heard stories of people having far worse times with chemotherapy than I did, and I’ve seen plenty of people in hospital on other types of chemotherapy that seem in a bad way. Although it is tough, it’s one of the best ways that we currently have of fighting cancer. Similar to exercise – you have to push through some pain to improve your final results. Keeping yourself physically active, mentally well and having a relatively good diet was essential in my experience. It may feel like a lot to get out of the house every day, and some you won’t be able to, but it will really help you out. Chemotherapy may be tough, but you have a plan to follow and objectives to hit. Every treatment day you find yourself back at that hospital is another one ticked off the programme. It doesn’t last forever and you feel great when it’s over (and perhaps a little lost too, but that’s Ok). I know that for a fact – I’m currently feeling better than I have in months, and I’m hoping I’ll only be getting better with every day that passes until the next treatment phase begins.

7 thoughts on “Twelve Rounds with Folfirinox

  1. Pedro Alonso says:

    Hi Dan, it’s great to see that you are keeping up the blog which in my humble opinion is essential reading for anyone on folfirinox. It’s been reassuring for me as someone who’s been on 26 rounds of the stuff that we fixate on the side effects rather than the disease it is treating…not because I’m a masochist but because it stops me thinking about the cancer all of the time. Unfortunately when I’m off treatment pancreatic cancer then becomes my focus once again….stay positive, take one day at a time & enjoy the little things. BTW they only give folfirinox to awesome people 😉

    Liked by 1 person

    1. Hey Pedro! Thank you – that’s very nice of you to say 🙂. 26 rounds…that is just incredible. I have no idea how you do it! It is far better to focus on the day to day challenges than the disease it is treating. Yes, I know what you mean about being off treatment. You start to feel worried that things are going to go wrong or something but I’m sure it isn’t that easy/straight forward (that’s how I reassure myself anyway)! Haha of course they only give it to awesome people 😎. Keep pushing on – 26 rounds really is inspiring!

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  2. I just want to say, you are such a brave man! I am learning so much about pancreatic cancer because of you. Know that I’m praying for you like a mom to her son. 🥰 You see, I only have a daughter, my one and only child. 😊

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  3. Hi. My husband is finishing his 12th round of FolFirinox for stage 3 inop pancreatic cancer. Did either of you have high dose MRI guided radiation (MRI-LINAC) after completing treatment? That is our plan if all goes well with the next scan.

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    1. Hey Bridget. Sounds very similar to my situation on the face of it. I went straight to surgery afterwards. The scans didn’t look good for me but because I’m young, the team wanted to try anyway. I’ve now had my entire pancreas removed and they think they’ve got the whole tumour but it doesn’t mean the cancer has gone necessarily. Another option would have been to do MRI radiation as a method of encouraging the tumour away from the vessel then hope surgery becomes an option. Sounds like that is where your husband is at. How has he found Folfirinox?

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      1. My husband is the type of person who can’t get out of bed for a week if he has a sinus infection (I’m not exaggerating). So FolFirinox has definitely been a challenge. Extreme fatigue, diarrhea, losing 40 pounds and the malnutrition that comes with the pancreatic tumor and chemo are tough to deal with. We have talked to several surgeons. Even though his tumor is small. 2.1 X 1.3 cm. It is connected to all 3 major arteries and no one will operate. We are hopeful he will be cleared for chemo 12 August 10th and if the scan the following week shows no metasis, we will travel to Boston’s Dana Farber Cancer hospital to have high dose radiation, since our current hospital in North Carolina only has CT radiation and he would have to take chemo in a pill along with radiation. It’s been really scary, sad and stressful being told in February that there was no cure and he only had a year to live. I’m glad you were able to have surgery and wish you the best.

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