FCR-6plus years in remission - am I cured.

[devonrr]

Had my 6 monthly telephone consultation yesterday. Still in remission with wbc at 5.7 and all in normal range.

Super. So, I get round to the question “I know there is no cure as such but am I heading that way?”

Answer; the nature of CLL means I could stay in remission for years or next time be heading towards treatment. None know, that is the nature of the cancer.

So, that’s us, we have CLL and need to get on with life.

Consultant was very concerned that my jabs were all up to date especially the flu vaccination. It is.

So, next appointment in 6 months - a telephone appointment. That will be nearly 4 years since I attended CLL clinic but my bloods and lack of symptoms don’t really require face to face appointments.

For those who are aghast at the lack of outpatient appointments; I can at anytime contact the Haematology team and they are so good.

Best wishes for 2023🎄

[Walkingtall62]

That is indeed good news, and we do like a bit of good news. What a beautiful Xmas pressie. Enjoy the festive season and all the best for 2023

[CTSteve]

This is wonderful news! I am currently on FCR. Had 1st cycle beginning of December.

[Red49]

Great news! As a prior FCR warrior it’s encouraging to hear. I am coming up to three year’s remission in February. I just had my first in person appt since treatment two weeks ago(thought I felt a lymph node they got me in two days later, turned out it was nothing ) and one phone consult prior…like you I know I can get in if necessary.

[Wheatkings]

Fantastic news devonrr! Thank you for posting as it gives hope to those of us on the same FCR journey. This coming Friday I have my specialist appointment to get blood work done. I go every 4 months. January will be 2 years since I started my 6 cycles. All good thus far (touch wood) - thank you again for sharing your great news!

[devonrr in reply to Wheatkings]

After 2 years they may put you on 6 monthly. You worry at first but you always have the back up of the clinic and the clinical nurses. Best Wishes

[GMa27]

4.5 years remission for me - only needed 3 rounds of FCR. I see my hematologist every 6 months because I also see my GP every 6 months so my bloodwork covers 4 times a year. I am 13q mutated which has a very good chance of staying in remission for 10 years or more. I look forward to hearing the word cured. For now I don't really label it. Congrats on your great update! 🎉💕

[Cheshire2016]

it’s great to hear such news, my husband finished FCR in Oct 2020, and we are now back to 3 monthly bloods tests, which as you say is always a bit worrying as each one could signal the return, so its very reassuring that you are doing so well.

[LeoPa]

Well what better Christmas present could you wish for? How is your ALC number? Are you completely treatment free or do you need IVIG or anything?

[devonrr]

We are talking small numbers here. Can’t be bothered to do the sum. As all parts totally in normal range.

However Lymphocytes. 1.78 at present. Pretty stable on bloods.

Not had any extra treatments since FCR finished. I didn’t have lots of tests before treatment, at that time the lymphocytes were 265(000). Other than influenza B 6 months after treatment finished I haven’t had a cold or flu. I enjoy life with a reminder to take care.

Consultant calls me lucky!

[Big_Dee]

Hello devonrr

I have heard some CLL Specialists from cancer center mention 10 years remission as possible cured.

[devonrr in reply to Big_Dee]

Yes, I’ve read that. So I need to get to spring 2026 without progression!

Best Wishes

[Test_Tech]

Great news devonrr, congratulations. I'm just off V+O treatment Sept. 16th. I know I will always have CLL but looking forward to being un-detectable for years to come.

[Onmytime]

Bravo!! Six years is fantastic! May not be able to officially claim “cured” …. But I’d throw it out there every once in a while to remind yourself of your blessings! 😉

[hervec]

Bonjour

If your CLL is igvh mutated you have 50% of chance to be progression free for mor than 10 years.

the challenge is to identify the features of CLL that allow FCR to be effective for more than 10 and direct others to targeted therapies.

Herve C

[Big_knicker_blues]

That's great news. I'm on a very similar time scale, having finished FCR in April 2016 on the FLAIR trial. Also on 6 monthly bloods & no treatment. All normal on bloods & long may it continue. Just thought I'd add another positive story. Happy new year everyone!

[noeagaman]

That's great news Devonrr! I am just about to hit 5 years since completing four rounds of FCR. I had to stop after four due to very low blood counts that put me in the hospital for a week. My oncologist thinks that I am allergic to one of the FCR drugs. I have been getting IVIG every six weeks since then and still have low counts. Still no sign of needing CLL treatment though so all in all things are good. I hope that you get at least 10 years or maybe even a cure!

Chris