Cll back after 4yrs

[Daisy1993]

Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.

[Fiona2014]

Hi...Like you it appears my CLL is awaking. FCR 4 years ago, recent mammogram noting numerous enlarged lymph nodes. In the process of follow up (GP, Cancer Clinic). I looking at the "next step" as well.

Involvement with this forum minimal- since treatment and remission. Will be accessing now that CLL appears to be rearing its' nastiness.

Best of luck in sorting out needed supports and treatment.

[Daisy1993 in reply to Fiona2014]

Good luck to you as wellOne step at a time so they say xx

[AnneHill]

I had fcr and it started to come back after 5 years. Back to watch and wait for 3 years and I now take Ibrutinib. I went into remission quickly and now take a lower dose. I have been taking Ibrutinib for over 4 years.If you have low numbers treatment might wait.

If you lock your post you may get more replies, Anne uk

[hasta]

Hi, seven years ago I received FCR treatment to fight against CLL. As it is in your case, CLL came back after 4 years. So, this time, three years ago, my oncologist put me through an immunotherapy treatment program that consisted of Gazyva infusions. This year, CLL seems to be coming back again. I am not sure what the next treatment will be. Good luck to you. Hang in there, enjoy life.

[Daisy1993 in reply to hasta]

Sorry to hear that it's back again for u. U take care and try and keep positive xx

[Skyshark]

You wait until it's at treatable stage. Likely to be Venetoclax + Rituximab or Acalabrutinib or Zanubrutinib.

clatterbridgecc.nhs.uk/appl...

[LeoPa]

Hi Daisy. Perhaps wrong choice of words. Cancer free is not usually associated with CLL. Being in remission is. CLL is still considered to be incurable. Though in some instances remission lasts long enough to enable the person to cautiously whisper about a possible cure.

[humanfly]

I have SLL which is lumped (sorry for the pun!) in with CLL. Radiotherapy dealt with it for 18 months. Next treatment was FCR for 5 months and when that finished my consultant assured me I'd be good for 5 years. 2 and a half years later the lumps returned, and because they were present below the diaphragm I was put on a Rituximab (6 monthly infusions) and Venetoclax (2 years). All the visible lumps (neck) went quickly but I am suffering assorted gastrointestinal problems which I'm blaming on the Venetoclax. I'm hoping they can be sorted with a bit of diet tweaking rather than yet more pills!

[AntonMB]

I was Diagnosed with CLL in 2016. I was treated with 6 cycles of FCR in 2018. CLL returned in late 2021 with enlarged lymph nodes, neutropenia and Anaemia. I started treatment with a Acalabrutinib in January 2022. I moved to a reduced dose in September 2023 as I repeatedly felt unwell with chemotherapy type symptoms, these have reduced with the lower dose. My Lymph nodes reduced soon after treatment began and all my bloods remain stable.

[Cocobuff]

Hi Daisy, I like so many others have the same issue. I was over 15 years remission just around a month ago I found a lymph node in my groin. All though it has almost vanished I am back at wondering what is next. Hopefully you and all of us can beat this. Best Wishes 🙏

[Daisy1993 in reply to Cocobuff]

Yes fingers crossed 🤞. Take care of yrself x

[Big_Dee]

Hello Daisy1993

My CLL came back after about 4 years and now is in remission after last treatment. Going on 7 years and know that many new treatments are down the road which is great Blessings.

[Mystic75 in reply to Big_Dee]

You are currently in remission for 7 years after your second treatment, Big Dee? That is fabulous!

D.

[Big_Dee in reply to Mystic75]

Hello Mystic75

Unfortunately, this is the start of 7 years after diagnosing and just finished my one year of V&O. I am still greatly encouraged by the number of new treatments in trials. 😁

[Mystic75 in reply to Big_Dee]

Thanks for clarifying, Big Dee. I agree - we have a lot to be encouraged about. Wishing you all the best!

D.xo

[Daisy1993 in reply to Big_Dee]

That's great news. Gives us all hope. U take care 😘

[hervec]

Bonjour

"You had your first immuno-chemotherapy treatment four years ago. Now, depending on your case, you will start probably Venetoclax with obinutuzumab for a limited time (one or two years) or an anti-BTK inhibitor, ibrutinib or acalabrutinib.

I had my immunochemotherapy in 2012 and I relapsed in 2017. Since then I have been on ibrutinib."

Herve C

[jkl700]

It is unfortunate that CLL has come back for several of the responders.

I have been on Ibrutinib for almost 6 years since 2018. After two sessions of chemo, stopped due to gallbadder removal. I started with 480 mg then after two years down to 280 and another two years down to 140 mg. I have been asked to join STATIC trial, or rather stop taking Ibrutinib and see what happens. Several people have done well after stopping the Ibrutinib. I am searching to see how others have coped when they stopped Ibrutinib. How soon the CLL can come back? I would welcome the stopage as my muscles ache, I am stiff and getting depression? Isn't that one of the side affects. Ibrutinib has been very good to me, maybe it is time that I stop. I am seeking answers as I need to make up my mind in a week. Thanks,

[Daisy1993 in reply to jkl700]

What a hard decision to have to make. I have been reading about the side effects of ibrutinib and to be honest they sound awful. I see my consultant on Monday and will hopefully find out more then. I suppose more tests will have to be done to see how far the disease has progressed and go from there. U take care of yrself and thank you for yr reply xx