watch and wait.

[T7374]

Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK.

Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50.

I been told last Feb that I am 13q deleted and mutated. Stage 0 and was put on watch and wait.

My last test was in Feb 2023 lymphocytes 11.5 wbc 19.

Todays test and the lymphocytes 17.8 WBC 24.5

All other results say ‘in range’.

Is there anyone else with similar numbers?I’m new to it all. My heart was pounding l as the email came through with the results. I was told to book a GP appt next week to discuss. In some ways it has been nice to shelve the CLL for this past year after the shock following the diagnosis. Thanks for reading.

[Newdawn Administrator]

Although it seems alarming in the early stages, a rise of barely over 6 in your ALC over more than a year is very minor and probably illustrative of a very slow moving condition. I rarely had a rise that low every 4 months and it took me 7 yrs to reach treatment.

Time to park the anxieties as long as there’s no additional issues. Your GP may worry more than your haematologist about raised lymphocytes and WBC but they don’t have the same perspective or broad experience with blood cancers.

All looks very well 😊

Newdawn

[lankisterguy Volunteer]

Hi T7374,

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This link may help understanding how CLL expert doctors determine when to start treatment: healthunlocked.com/cllsuppo...

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And please look for the box on this page labeled: Related Posts

*Wait&Watch vs. Just Wait

*WONDERING ABOUT WATCH AND WAIT

*Great news in watch & wait

*Newbie on watch and wait

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Len

[CoachVera55]

Yeah this stuff is worrisome but waxing & waning is what my first Oncologist said would happen & I went 13yrs 8mos before needing treatment. Now is the time to take the best care of you & the rest you have no control over anyway. There is so much on the horizon for CLL & I believe there will be a cure maybe by the time you need treatment if you ever do at all.

Take this time to find a CLL Specialist & a team of doctors you trust so whatever comes, you’ll be in good hands all ready to go!!! Enjoy you Wait & Watch Time🙏🏾

[LeoPa]

I'm in a similar condition somewhat behind you. You can check my bio and posts.

[Skyshark]

You can have Lymphs in the mid 100's and still not need treatment.

[AussieNeil Administrator in reply to Skyshark]

We have some members in watch and wait with lymphocyte counts of 400+. There are cases of 1,000+ on record.

[thompsonellen2]

My condition is the opposite (aggressive) but I am happy for you. Looks like you are doing great! Live you life well! Looks like you can put it on the shelf for another year.

[jerard59]

IMO your numbers are fine. Mutated is a good status. WBC is just a number. As my specialist told me it's not about numbers it's about life quality. While I did monitor my numbers I didn't let it concern me. When my quality of life got effected both me and my Doc agreed it was time. By quality of life I mean I began to get winded just walking up stairs or doing menial tasks. After treatment I am back to enjoying life even better than pre-diagnosis. Back to running, biking, skiing, hiking and exercising. I am turning 65 and not letting this disease rule me. Although I got to UMRD the little buggers are back I'll deal with them down the road when hopefully there's an even better treatment available. My Dad died fighting this disease before all the immunotherapies were developed. My treatment was not my Father's treatment that's for sure. In the end don't worry be happy life is fleeting don't waste it.

[RSilver in reply to jerard59]

Sorry about your father having to go through what he did. I think it's fantastic the advances that have been made in our lifetime. I've adopted a similar attitude.