CLL treatment

[Rubymom]

Hi everyone, I am wondering if I can get your thoughts/experience on some new results my dad got from his doctor after his recent CLL follow up. His levels have been going up at each follow up. He was told that his spleen seems ok but he will now need a cat scan to check out his lymph nodes and determine a course of treatment. He has enlarged lymph nodes in his neck, underarms, and groin. Does anyone have advice or feedback on this?

[AussieNeil Partner Administrator]

Hi Rubymom,

This post goes into the triggers for beginning treatment:-

healthunlocked.com/cllsuppo...

There are considerably less treatments approved in Canada than the USA but you should be able to find plenty of information on the treatment which is recommended for your Dad.

Search for the treatment in Search on our Posts page: healthunlocked.com/cllsuppo...

Neil

[CLLerinOz Administrator]

Further to AussieNeil 's reply, Targeted Oncology published an article about CLL/SLL treatments to coincide with a presentation by Dr William Wierda at the recent SOHO 2022 conference.

targetedonc.com/view/greate...

[goldstream]

Rubymom, he will likely be getting a CT scan so they can measure the size of the Lymph nodes. Does your Dad have any other symptoms (e.g. night sweats)? Also, what province are you in (I am in BC)?

[Rubymom in reply to goldstream]

He is being scheduled for a CT scan then a follow up 6 weeks after but they didn’t really say which types of treatments he might be on. We are in Ontario so not sure how many types of options are available.

[goldstream in reply to Rubymom]

The list of potential treatments are here. cllcanada.org/treatment-acc... . If he hasn't been treated in the past then most of us are on Ibrutinib (Imbruvica), the most common first line of treatment these days. Its typically 3 pills taken once a day. However, the oncologists will want to confirm his readiness for treatment through blood tests, other symptoms (e.g. enlarged lymph nodes, night sweats, enlarged spleen, etc) CT scan and bone marrow biopsy before starting treatment. That was my experience in BC.

[Rubymom in reply to goldstream]

Thank you so much for the information. I guess we’ll have to wait and see what the results of the ct scan show. This would be his first round of treatment. How long were you on the treatment for? Was there any side effects?

[goldstream in reply to Rubymom]

Rubymom, the new CLL drugs are not like traditional chemotherapy. For Ibrutinib the full dose is 3 pills, once a day, every day. I have been fortunate and don’t have any significant side effects from the medication. Patients who don’t tolerate Ibrutinib well are typically given a variant like Alcabrutinib.