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 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!
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 PFS. At six years of follow up around 2/3rds of people in that group still hadn’t required further treatment.
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.
Of course that does leave me with the thorny issue of how I feel. So we discussed that.
For sure infections won’t have helped and I’ve had them a plenty.
For sure FCR itself causes some fatigue and that can take many months to resolve.
So can the damage CLL itself causes.
So he would expect that whilst it might take a while I should see an improvement.
However when I was explaining certain symptoms I have stated having recently and that some of them disappeared during FCR he was wondering about other possible explanations.
One thing he was querying was the possibility that I may have Polymyalgia Rheumatica or another immune condition complicating things. One reason was that some of my aches and pains got better on FCR and are just now returning. It is an immune disease so considering how our immune systems are just messed up in every way and we are at more risk of various auto immune things it kinda might make sense.
Importantly apparently almost a diagnostic test is the rapid response to steroid treatment. And I’ve had to have steroids for other reasons (Eg when I had my tonsils out) it was indeed amazing how much better they made me feel at the time. My mind felt clear for example something it just hasn’t for two years otherwise.
Anyway just wondering if any of you wonderful people have been diagnosed with Polymyalgia Rheumatica and / or know any more about it?.
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That is great news Adrian! I am also unmutated and will possibly get FCR as front line treatment (as per standard of care in the province where I live) so to hear your positive result is indeed encouraging.
Thanks Cindy. I had a strong response to even the first cycle. But I suspect it was important to continue the six. I wish you well. Great to know that alternatives are available down the line if needed.
We already knew you were one in a million, but one of four in two million, that complicates matters in a good way. You are a very complicated and very lucky guy.
No. He lives in Leeds and I live in London so that wouldn’t be practical. You need regular supervision and the ability to be admitted if that does become necessary (which of course it isn’t for many people).
My flair team is lead by Prof Nethwani at UCLH under the NHS. I have now seen Hillmen twice at important junctions (here post treatment, and previously when I was starting to feel more and more unwell with counts doubling every three months and wondering if treatment was looming).
It was good to see Hillmen today as I only recently got the results of my post chemo scan and bone marrow and last time I was in the NHS clinic Nethwani was on holiday or something....
It is often possible to obtain a second opinion on the NHS and I have certainly heard that Hillmen is incredibly generous with his time whether you are a private or NHS doctor. And there’s nothing stopping anyone asking to see him or one of the other top experts.
We really ought to get a clearer handle on who the top ones are.
But for sure you can start with the FLAIR list. I think we have now established that EVERY UK centre that is a CLL expert site is part of that trial. Then you are looking at who has actually published in CLL, what the quality of the services are like (Eg do they have dedicated in patient beds and a 24/7 nurse helpline for all patients not just chemo ones), how many patients with CLL seen there (that data seems hard to find out) and ideally the respect with which they are viewed by their colleagues both here and abroad (hence looking at have they spoken about CLL at conferences and congresses)
Congratulations Adrian. It’s interesting you mention that EVERY CLL UK centre is part of the Flair trial. When I asked my CLL centre at the Royal Marsden about Flair six months ago, I was told they didn’t do it...?
Brilliant news Adrian! I’m so pleased for you. You’ve had a really tough time and deserve this good news. Long may it continue.
Regarding the other condition Polymyalgia Rheumatica - I was diagnosed with “Palindromic Rheumatism” over two years ago. I had intermittent swollen and painful joints and tendons in my hands and wrists and the flare ups lasted about 48 hours. It was the blood test done in relation to this condition that led my GP referring me to haematology and then my diagnosis of CLL. I remember my consultant rheumatologist saying there was something going on with my white blood count, he didn’t know what it was but it was nothing to do with my palindromic rheumatism. Palindromic Rheumatism is an auto immune condition where my immune system is attacking my joints - all becomes clear now! Fortunately the flare ups only happen very occasionally, in fact it’s been over a year since my last one.
I know my condition is different to the one Professor Hillmen mentioned but it struck a cord with me.
Interesting. Yes most of us know that for example we can get an autoimmune anaemia or thrombocytopenia but it seems there is something about the CLL affected immune system that makes it more susceptible to autoimmune inflammatory conditions as well as less able to fight infections and in some people more prone to allergies.
I had mild allergies before they are now much worse.
It seems some of us loose the ability to decide what is self and what is foreign and therefore what should be attacked. So sometimes a bacteria is left well alone whilst dust mites or pollen or even our own cells get attacked!
Like infections and second cancers these immune illnesses I suppose go into the category of indirectly related in that people without CLL can get these illnesses but we are much more likely to get them.
Rachel, like you I also have Palindromic Rheumatism. It was only diagnosed about 18 months ago, but the flares started about 6 months after my CLL diagnosis in 2011. The rheumatologist says there is no connection with the CLL, but I am not so sure!
I just want to say that i wish i had as much knowledge as u and other members here. (Newdawn,Aussie Neil, jm954) and allot others can't remember off the top of my head, but reading your posts is enough to educate me and every one else here. I appreciate so much finding this great community.
All treatments have a detrimental effect on our healthy and cll lymphocytes. They will therefore further reduce our ability to produce antibodies tho that drops off in most people even before treatment. There is some sense that people may redevelop an ability to produce antibodies but there’s certainly a number of us who need up on antibody replacement. When it comes to neutrophils they are not always lowered but can be lowered with any treatment and that does usually come back up to normal.
You might want to get a range of opinions from different specialists about the first treatment. I suspect tho that with af least some Venetoclax combos now available in the USA outside of trials, and with her drug also getting people to MRD undetectable if you can get funding then I suspect a lot of people will plump for that who otherwise might have chosen FCR. It’s a complex decision. In the Uk we have it made for us and only certain people get an option not to do FCR first line outside of a trial.
Good news! Very pleased for you. I've been wondering if I might go back to see Prof Hillman. I know I am seeking reassurance. I also dont have any BM results as per FLAIR etc. So minimal info to go on.
So glad to hear your good news, Adrian. Just shows how unpredictable CLL and it's treatments can be.
It's still a puzzle re your other health problems though.. Hopefully you can find out more re the poly.rheumatica possibility and find some treatment that helps you.
So pleased for you and so encouraging that the Prof thinks the lingering 'other symptoms' that are such a drag are likely to improve - a pity that they are taking so long - but hopefully . . . If there is something else lurking - if now searched for specifically it will be brilliant if they/it give themselves up and can be treated in some helpful way - here's hoping.
In the meantime, revel in your 'best bits' from this consultation!
Wonderful news, so pleased for you Adrian. Your posts have been extremely helpful/encouraging and informative for my husband who is on W&W and also under Professor Nathwani at UCLH. Praying the polymyalgia clears up quickly. This site is so so educational and informative. Thank you all.
Adrian, I'm so happy for you. You've been through the mill. I hope that you are well and truly out the other side and can get on with your life, give or take those niggles that we folk of a certain age have to deal with.
Hey listen I’m FORTY EIGHT! I kinda wasn’t expecting to be dealing with old age type niggles at my age! I often say that I sometimes feel like I’m ninety already
So very glad to hear your good news! I'm nine months out from 6 rounds of FCR and feeling good over all. Sending prayers for you going forward, that you'll find helpful answers to your other health issues and can get back to enjoying life as we're meant to.
Congratulations Adrian. I’m unmutated, trisomy 12 and had FR as a front line treatment. I passionately enjoyed a five year remission. Thanks for sharing your exciting news. Sally
This in the first time I've seen data on Unmutated patients who reach UMRD. I've looking because I'm unmutated and probably going to be UMRD in an I/V trial. I didn't think I would find any data because I assumed FCR patients that reached UMRD were all mutated.
So happy for you Adrian! Very good news! Hope soon you will get that fatigue get better too. Prof. Hillmen is a great specialist and very kind person. Thank you so much for advise to see him!
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