Platelets

[Feavers]

Wbc 81 lymphocyte 77 slowly going up my consern is platelets 102 does this mean getting close to treatment, would be grateful for your opinion

[PennyLane2024]

I started Venetoclax in May because my lymphocytes went from 66 to 160 in three months. My platelets were 266. Today, my lymphocytes are 3 and my platelets are 177. Lymphocytes doubling in less than six months and/or low Red Blood Cells are strong signs that treatment is needed. Based on the information you provided, your Red Blood Cells are low. You should have a conversation with a CLL Specialist.

I feel much better now that I started treatment.

[Feavers in reply to PennyLane2024]

Thanks for replying, just under my doctor at the moment, he doesn't seem concerned at the moment, but I am

[PennyLane2024 in reply to Feavers]

If your platelets have been consistently dropping and your lymphocytes have been consistently growing, then you should get a second opinion from a CLL Specialist.

[Feavers in reply to PennyLane2024]

Yes you are right, I am going to do that thanks so much

[AussieNeil Partner Administrator]

Feavers, the relevant sections of the iwCLL Guidelines Indications for treatment

4.1. Primary treatment decisions

are:-

Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.

1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 x 10^9/L are generally regarded as indication for treatment. However, in some patients, platelet counts<100 x 10^9/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

:

4. Progressive lymphocytosis with an increase of $50% over a 2-month period, or lymphocyte doubling time (LDT) <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; patients with initial blood lymphocyte counts <30 x 10^9/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.

My platelet counts dropped to the low 50s prior to treatment and bottomed out at 29 before recovering. I didn't meet the requirement for platelet transfusions of under 10 without an infection and under 20 with an infection. However, I did need a couple of packed red blood cell transfusions despite my haemoglobin only dropping to 10.5 prior to starting treatment. This is where consultant experience of observing lots of CLL patients, helps them determine the optimum time to start treatment.

There's more on the triggers for starting treatment in this post.

healthunlocked.com/cllsuppo...

Neil

[Feavers in reply to AussieNeil]

Thanks Neil you always put my mind at rest and many others, hope you are well

[Paulhonda]

If it’s any help, my platelets got down to about 50 before I started treatment.

[Feavers in reply to Paulhonda]

Thanks for that, it does make me feel better 👍

[LeoPa]

Not necessarily if it stabilizes around this level. But if the trend keeps going down then maybe yes.

[Feavers in reply to LeoPa]

Thanks, just have to wait 👍

[Adinajr]

My doc at Univ. Of Penn also took into account how I was feeling. Asked about frequency of night sweats, infections and fatigue which also indicate treatment. Had blood work done yesterday and my platelets are 95 (used to be lower) and my hemoglobin is now normal on Calquence.- I'm also one of those weird ones that don't have the doubling going on. So... you can't just go by the platelets- it's a combination of things that indicate treatment.

[Feavers in reply to Adinajr]

Thanks for the response, that makes sense

[Smakwater]

Are you having any issue with protein level?

May be unrelated, yet, here is a short read - ncbi.nlm.nih.gov/pmc/articl...

More a question for your oncologist based on labs.

JM

[Feavers in reply to Smakwater]

Thanks for the response 👍

[scryer99]

My platelets were consistently below 100 during watch and wait. This did not trigger treatment as they were relatively stable. My oncology team indicated if they got closer to 50 there would likely be a treatment discussion.

ALC counts ranged from 60 to 140 over this time.

I eventually had spleen damage from swelling; this in combination with the low platelets was definitely enough to start treatment immediately. ALC spiked to 300 at treatment start, in part because of treatments for the spleen laceration.

[Feavers]

Thanks for the response, I love this site so helpful 👍also how long was you on watch and wait