Hello all. Well I have been on w&w since 2014 and haven't posted much on here as not much has happened which for me obviously is a good thing.
White cell count has been creeping up slowly every 6 months until my appointment in October 2016 when it had risen from 58 to 118. When I had my next appointment last week it had almost doubled again to 206. They told me to come back in next week for further investigation. I must admit I'm a bit surprised they didn't get me In sooner after it doubled in October. I am still feeling fit and well with absolutely no symptoms apart from plenty of swollen lymph nodes none of which are very big or uncomfortable. I just wondered if anyone has had this kind of experience, is this fast doubling time a big reason for concern alone and are they likely to consider treatment soon? Obviously feeling a bit worried as my CLL does seem to have suddenly become more active.
Thanks
Ian
Written by
Eebie1234
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I agree it is a concern Ian, but counts by themselves are not a reason to treat, all things being stable otherwise.
How are your other blood counts, Hgb, platelets etc. I would think a CTscan shortly would be prudent, to see internal involvement.
I have had absolute lymphocyte count [ALC] counts double in a month, from 80 to 170, and I have also had them drop by approximately the same amounts.
How do you feel? Are you experiencing B symptoms, night sweats, fatigue/malaise, weight loss etc... they enter the picture now.
From my experience, I think treatment in the future is likely, but it could be a year away or more..the skill of the doctor comes into play at this point, some patients have absolute lymphocyte count [ALC] over 300K and have no other signs and remain untreated,
If treatment is discussed, I recommend a second opinion, its fairly common practice...
Thanks Chris. I don't have my results to hand so don't know about the other counts. The doctor who kindly phoned me on the same day didn't mention concerns elsewhere but I guess I will get a better picture next week when I attend my appointment which is with a consultant this time I think.
No B symptoms at all apart from last summer I needed antibiotics for an insect bite which quickly became an infection.
Thanks for the advice re second opinion that sounds a good plan.
Your CLL may calm down again. CLL specialists don't consider fast doubling time (LDT) as a reason for starting treatment if you are otherwise well and not having any other symptoms of concern. The relevant sections of the current iWCLL Guidelines for the diagnosis and treatment of CLL, section 4 - Indications for treatment for you are:
3. Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy
4. Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months. In patients with initial blood lymphocyte counts of less than 30 ϫ 10 9 /L (30 000/L), LDT should not be used as a single parameter to define a
treatment indication. In addition, factors contributing to lymphocytosis or lymphadenopathy other than CLL (eg, infections) should be excluded.
iWCLL Guidelines (a new version covering non-chemo drugs should be out sometime soon hopefully): bloodjournal.org/content/11...
From my own personal experience, it was not my doubling time that was the reason to start treatment but my persistent and worsening anemia, 15 pound weight loss, extreme fatigue, enlarging lymph nodes and frequent infections. Since you don't have any of these symptoms your time for treatment may still be well off. However, if treatment is eminent, fear not! Seek a second opinion (if possible) just to be certain and then embrace this next step in your CLL journey with the knowledge that many treatments now available are life changing with minimal side effects. I am currently in my 6th month of treatment as part of a clinical trial on TGR1202 and am feeling terrific.
Wishing you all the best moving forward and keep us posted on your progress.
I too also have had increasing numbers and have been doing monthly visits now. I was told I will need to start treatment. I am very nervous. I will be getting a bone marrow biopsy as I have never had one I recently had a series of. Look work and nothing has changed with my markers. I am trisomy 12. I was diagnosed in June 2014. I have very large lymph nodes. The doctor talked to me about starting oninutuzumab. I am 53. Good luck to you!
Thanks for the reply. Good luck to you with your treatment whenever you start. I am 52 and diagnosed also in 2014. Seemed like treatment was a long way off until last week. Take care. Ian
My wbc went from 12 to 22 in 1.5 years. Last year it went from 22 to 98 (doubling time 6 month).
My specialist says # don't mean much. The most important thing is how I feel. Nevertheless we started to speak about possible treatment options, and I had bmb. Moti
Hi Ian....I am fairly new here (husband has CLL). I can't offer the information those ahead of me have given. But thanks to your question, I feel a huge sigh of relief! His numbers have gone up in the past 6 months, dr said "don't worry" but that's very hard to do when you don't have a good grasp on CLL.
I don't know what my emotional state would be without this forum.
This thread has been really helpful to read. It's good to see what doubling means. And how treatment is decided. I hope you're doing well (from 2 years ago).
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