Post FCR shades of grey

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.

4 Likes

Hi Adrian, thanks so much for signing on and taking the time to write your post, Sometimes I find it is a weight off my mind to just get it all out in writing and I often find others really relate to my ‘diary and ramblings’. You say it so well, please keep posting and please do let us know how your 3 month follow up appointment and all the test results go, hopefully next week. Don’t forget the Bloodwise support line is there on 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. if you need it.

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Dear Adrian, thank you so much for writing this post, it expresses well the emotional elements of having a blood cancer. I myself have ppcl myeloma and am not eligible for a stem cell transplant so face being on permanent treatment as I relapsed very quickly after my induction therapy. I am a very stoic character and have taken full advantage of Macmillan palliative care services, which currently I am not actively using but have the knowledge that they are there in the background if things don’t go well with my 2nd line treatment and I find this enormously comforting. As you described so eloquently in your post it’s not all black and white but shades of grey and once you come to an acceptance of your reality it actually frees you up to enjoy your life as the pursuit of absolute certainty of outcome is a energy sapping business. At the end of the day it’s all about quality of life for me and longevity only has any value if your free to live your best life given the circumstances.
Best wishes
Alfie

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@Adrian thank you so much for taking the time to share some of your experiences and feelings of FCR with us. As you said in your post, everyone’s experience differs, but I think reading such an insightful post may let others going through this treatment pathway, know they’re not alone. Wishing you all the best with your results at your follow up!

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Thank you for sharing this Adrian, I’m sure it will be enormously helpful to those who may need FCR for CLL to read an account of life during and afterwards. I hope that you are well, please do come back and let us know how you are, if you’re up to it.

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Hi dawn. So sorry I forgot to share my results!

My CT shows “essentially a complete remission”. And one of the tests on my bone marrow looked at 2 MILLION cells. In my case just 4 of them had a signal that was suspicious of the form of blood cancer I have (CLL). But unless they had 20 such signals they aren’t even able to progress to the next stage of the test to fully confirm those 4 cells were in fact dodgy.

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 which is what they call MRD Negative or Undetectable. So although I do probably still have some cancer cells there at the moment there are very few.

More about this test and CLL can be found here
Article link:
https://www.nature.com/articles/s41375-018-0132-y

So hopefully my recovery in terms of symptoms will continue to improve in the next few months.

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Hi! Thanks for the kind words. It’s always very nice to hear from others who have similar experiences even with different blood cancers. I find your comment about quality vs quantity of life quite interesting since I remember thinking about that very point. But I did come down the other way on this one personally. Maybe because of my age and maybe because I have kids. And maybe because to be honest I’ve not felt that great for the last couple of years.

My thought was that although of course if I could have both length of life and quality of life I would want both, if I had to chose only one of those it would be length. Some people of course would say the opposite I’m sure.

But I want to stick around for as long as possible please no matter what happens to me. As I think do many of us. I’ve met some people who’ve had much more intensive treatments than I have, and have faced quite bad side effects. I admire them. But for many of them there is really no option to not take the treatment in their minds if that treatment gives them even a chance of a longer life.

Over the next few years the exciting thing is hopefully more and more people won’t have to make that choice as more and more targeted drugs come out and more treatments that don’t always need to be taken for months, years or even decades

As ghastly as it is to have a blood cancer we are living in times when so much is changing for so many of these cancers.

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Dear Adrian, it’s so good to hear that everything is going well for you and long may it continue. I’m having my ups and downs but I’m still hanging in there, apparently I’m a one off as far as my disease is concerned as usually when you don’t get a transplant your odds are not good. So it’s a miracle I’m still here nagging my husband of 35 years L.O.L. getting lots of support from my Macmillan palliative care nurses and remain focussed on maintaining a good quality of life. I dont have children so can afford to make decisions others can’t really consider and also my treatment options are severely limited as I have total kidney failure and toxicity of any drug regime has meant I don’t get to choose.
Best wishes Alfie