starting treatment

[benchica]

I am 82+ male. CLL diagnosed 10 years ago . WBC is 207,000.0. I feel OK . Can walk bike and row. Weight is up. some tirdness following tasks. No lumps or bumps.

Do you have an opinion on me starting treatment?

[Lawand1]

Don’t until your specialist says so. If you feel okay and your specialist is happy for you to remain in w&w then enjoy it. When the day comes, could be soon could be later then there are some wonderful treatments.

[benchica in reply to Lawand1]

Thanks

[cajunjeff]

Hello Benchica. I am not a doctor but I think can safely write that no one on here, doctors included, could give you a meaningful opinion on when you might need treatment with the scant information provided.

You might could get some idea if you can include info such as how your wbc, hemoglobin and platelets have done over the last several years. A wbc of 207000 in and of itself is no guide. If your wbc went from 50 to 100k over six months, that would be more indicative of when treatment might be needed than a stable 200k reading. Its more the pace of our cll that determines treatment, how fast is it progressing as shown by serial lab studies.

See the link below for the criteria doctors use to decide when to treat cll:

ashpublications.org/blood/a...

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

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 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

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 × 109/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.

Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.

Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).

Disease-related symptoms as defined by any of the following:

Unintentional weight loss ≥10% within the previous 6 months.

Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.

Night sweats for ≥1 month without evidence of infection.

[benchica in reply to cajunjeff]

Thank you for your thorough response. My wbc was in range of 90,000.0 until summer 2020. Since there has been a steady climb.

[cajunjeff in reply to benchica]

That’s more information. I would think that your wbc jumping that much in so short of a time would be an indication you are nearing time to treat. Often with wbc jumps like that you will a corresponding fall in hemoglobin and platelets.

I would have the when will I treat conversation with my doctor with a change like that. Starting treatment is not all bad, you have lots of good options when that time arrives. We don’t want to treat too early, but nor do we want to wait until our cll has made us really sick.

[Jeaniep46]

I would say if you feel well and have no symptoms like fevers, weight loss, extreme fatigue and and platelets still around 100 or above and RBC not less than 8 and doctor says to watch and wait. I would W&W. We are all different. I started treatment when my wbc was over 300,000 platelets around 100 RBC about 7.8.

[benchica in reply to Jeaniep46]

I thank you for your details. Haematologist recommends treatment soon.

[devonrr]

How’s your Hb? If that is falling below 10 then it’s time for treatment.

It’s strange that you don’t think you suffer from tiredness until you have treatment and realise, yes, it was affecting my normal daily activities, as you have a new lease of life.

[GMa27]

Sounds like ur doing fine. What are ur markers?

Just continue with check ups till your hematologist mentions possible treatment then always get second opinion especially from an expert.

Keep feeling good! 🙏💕

[Big_Dee]

Hello benchica

I agree with cajunjeff. Also treatment is based on your general overall health. Don't treat too soon, but don't treat too late as it can be a long road back. Blessings.