CLL FCR update - 3 years on.

[Rich316]

Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt I owe it to the forum to offer hope and support for all going through, or waiting for CLL treatment. My bloods are now ‘boringly’ normal (with a Lymphocyte count of 0.6) and I am still, happily, MRD - negative. In other words I am still in complete remission with no trace of the disease present. I can’t say that the chemo has not left a bit of a legacy as I do suffer with Psoriatic flare ups and/or Psoriatic/Rheumatoid arthritis in my joints. However, this may not even be chemo related and just an unhappy coincidence. Even if it is related, I am fully aware of what the alternative would have been.

I hope this post is, in some way, reassuring to those on the W&W list or looking at treatment soon. There is hope out there and new treatments are being developed all the time. That’s it from me for another 6 months and I wish you all good outcomes of any treatment you may have.

Plot added showing that IgHV mutated folk who achieve MRD negative status on FCR have an 80% chance at achieving 15+ years of progression free survival. See my reply below - Neil

[GMa27]

I am one year in remission from FCR!!

Glad ur doing well. I feel great! 💕

[Sushibruno]

Hi Rich, Stories like this is what i like to read. Positive outcomes of treatment, i hope that you remain mrd negative for a very very long time. I really want to focus on the positive more. I'm on watch and wait But I'm always thinking about time for treatment which i think most of my anxiety comes from. I want to focus on the fact that i have a good doctor and she will take care of my cll. Thank you for this post.

[PlanetaryKim]

That's great that it got you to MRD-neg and you are still there all this time later. Thanks for the update.

kim

[AussieNeil Partner Administrator]

Pretty impressive from a peak lymphocyte count of 277, 3 years ago! If you are IgHV mutated (and with these results 3 years on, there's a good chance that you are), according the 2015 paper by M D Anderson authors referenced in my reply to JM954's post below, you have an 80% chance of an indefinite remission. The paper showed data out to 15 years! (I appreciate the challenges of knowing your IgHV mutation status in the UK).

I've taken the liberty of including the 80% effective cure rate for those who are IgHV mutated and reached MRD negative on FCR in a plot image in your post.

healthunlocked.com/cllsuppo...

Thanks for your encouraging update, (and please give us another well before 15 years post treatment) ,

Neil

[Rich316 in reply to AussieNeil]

Wow, that is interesting and encouraging. To be honest, I had never considered - or dared - to think of an indefinite Remission and I wouldn’t want to tempt fate by starting to now. I am grateful that

the treatment was successful and my CLL isn’t on the forefront of my mind any more - and long may that continue. I may, on my next visit, make an enquiry as to my IgHV status. As I am on the FLAIR trial, I think it is on the check list when I give bloods.

Thank you for this information. It has certainly given me something to think about.

[Root65 in reply to Rich316]

Would love to know if they tell you your Ighv status, my Dr is withholding that information from me just now. Please update!

[HopeME in reply to AussieNeil]

Neil: Rich316’s post certainly ties into your post yesterday- on another thread - regarding FCR remaining the gold standard for mutated folks. That was the position of a group of doctors from MD Anderson you cited as I recall.

[AussieNeil Partner Administrator in reply to HopeME]

Exactly - It's going to take a while for non-chemo treatments to prove that they can offer indefinite progression free survival for 80% of those taking it. healthunlocked.com/cllsuppo...

Makes me wonder how many members that have reached MRD negative on FCR are just getting on with their lives and no longer check in here to let us know that they've been able to forget about their CLL. Makes Rich's post that much more appreciated.

[BellaBee10]

Thanks Rich. Congratulations on your results. It’s almost three years since I finished FCR and my lymph’s are 1.2. I haven’t had a bmb so not sure of status but a good result I reckon. Thanks for the update. N

[sue2412]

Just what I want to hear as I’m on my 3rd cycle of FCR. So it will all be worth it when I go in remission. Thanks for the update and hopefully a long time back on watch and wait.

[Rich316 in reply to sue2412]

Hope it isn’t too rough on you and here’s to a great outcome!

[sue2412 in reply to Rich316]

It’s been a bit rough so far but if it puts me into remission I don’t care. It will be wonderfully to have some energy and get back to enjoying myself. Take care of yourself!

[Wroxham]

Just great to hear your good update Rich.

Sue

[Root65]

Thank you for taking time to post good news. I am starting FCR next Wednesday for the Flair trial and worry deeply about the outcomes. A different journey for everyone, but your good outcome is a comfort to me.

[sue2412 in reply to Root65]

Hi I’m in my 3rd cycle, it’s not been plane sailing but I wasn’t expecting that. The big thing which has helped me is being positive as I know that long term I’ll hopefully go into remission. So expect a few injections etc and if you don’t get them it’s a bonus. If you have any questions just ask. Good luck it’s not as bad as you think.😸

[Root65 in reply to sue2412]

Thanks for the news your getting through OK. Will probably send first question from hospital when nurses are too busy 👍

[JigFettler Volunteer]

Thanks Rich.

Very supportive post.

I am interested in your L count of 0.6 after 3 years post FCR - are you still on prophylactic Co-trimox for PJP?

My Ls are are still around 0.3 or 0.4 and I am to contimue till Ls above 1.0...

healthunlocked.com/cllsuppo...

where Jackie addresses this.

Cheers

Jig

[Rich316 in reply to JigFettler]

No, I stopped Taking Septrin in month 3 of Chemo as I had an allergic reaction to it, So went on monthly Pentamadine. I haven’t had a prophylactic antibiotic since finishing chemo and have fought off colds, flu, minor infections fine so my immune system seems to be working okay. I have my yearly flu jab and I have had to had several course of AB for a couple of deeper salivary gland stone infections, which later required surgery (not related to CLL though).