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?.