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. And with the rules of chance variation it could well mean that the real result might be as high as 1 in 3333 without one happening to appear in the 10,000 gathered. 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 my 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 since other treatments also suppress whatever useful lymphocytes we still have it’s not like we can 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 have to be patient. After all they call us patients because we have to learn to be patient.
This is me signing off for now.