CLL treatment

[Grandadsboys]

Hi all

I was diagnosed with CLL in 2021 & was on watch& wait until jan this year.I had a blood test & went to see a haemotologist .Bythis time my wbc was 600 & my HB was 60 ,I was lucky to get on a trial & was put on zanubrutinib for 3 months then sonrotoclax was added.I watched my WBCfall rapidly& my HB. Rise .on Thursday I was told by my Haemotologist that I was in complete remission.If any of you get the chance to take these two meds don’t hesitate.I have had no side effects at all .There is no chemo in the meds

Best of luck to you all & never give up xx

[Spark_Plug]

I'm glad it worked for you.

[sidesy]

Thank you for the heads up. I may look at joining this trial in the UK. Glad it worked for you. NO side effects at all ? Gary

[Grandadsboys in reply to sidesy]

Absolutely non at all

[Zia2]

Congratulations! You must be so thankful. Thank you for sharing.

[phd1114]

I'm so glad you had a good experience with these drugs, and no poor side effects. I am curious, though, about the zanibrutinib. You mentioned that the drugs had no chemo. However, my oncologist said all the new CLL drugs are 3rd generation chemo (ibrutinib, acalabrutinib and assume that includes zanibrutinib). Is that not the case? Would love to know more.

[Skyshark in reply to phd1114]

All drugs used for cancer treatment are Cytotoxic, cyto - cells, toxic - kills em.

Chemotherapy drugs damage the DNA of cells that are dividing. Then gatekeeper genes detect the damage and make the cell die instead of dividing. One of the main gatekeepers is TP53. Chemotherapy doesn't work for those with del(17p)/TP53mut. As chemo kills all dividing cells it not only attacks the CLL B-cells but also all other dividing cells. Those are ones that are being rapidly replaced, skin, gut lining, hair and nails. This is why chemo is seen as being so rough on the patient.

AntiCD20 Monoclonal antibodies have a protein that attaches to CD20 expressed on the surface of B-cells that are destined to become plasma cells. The antibody is like a flag that tags them for destruction. CD20 doesn't appear in other places so it's very precisely targetted.

Venetoclax attaches to BCL-2 "keep alive" protein on the surface of mitochondria. This prevents the mitochondria powering the cell so it dies. BCL-2 is usually over expressed in CLL, this makes it a favoured target for the drug.

BTKi such as Zanubrutinib bond covalently to Bruton's Tyrosine Kinase on the cell surface. This inhibits the "keep alive" signals that the kinase passes into the cell. Without this signal the cell dies. There are a large number of off target kinase receptors but for some reason the BTKi prefers to bond on a CLL B-cell.

[Newdawn Administrator in reply to phd1114]

My experience, having been on Ibrutinib (with Venetoclax) and now Zanubrutinib is doctors always refer to them as oral chemotherapy. Whether this is for convenience or is an accurate description remains to be seen but a registrar recently argued with me insisting Ibrutinib is chemo!

BTK’s target the molecular abnormalities of cancer cells unlike traditional chemo which involves cytotoxic (cell-killing) drugs that mainly kill cells that are growing and dividing rapidly. Nurses in particular make no distinction between immunotherapy, targeted drugs and chemo because I suspect the expression ‘chemo’ is something of a coverall even if it doesn’t involve infusions. I find the public understand and actually relate much better to the description too.

I’ve given up arguing with them frankly because as long as they work I don’t care what they call them! 😉

Newdawn

[Tajie in reply to Newdawn]

My oncologist refers to my Brukinsa pills as chemo too. With the cautions about washing my hands before and after taking the capsules makes me think of them as chemo.

[Skyshark in reply to Tajie]

Never bothered about Venetoclax. They were foil packed and film coated. I did have a pharmacist tell me about washing hands.

[Newdawn Administrator in reply to Tajie]

I must confess that I’ve never been advised to wash my hands before or after (although I’m an avid hand washer generally anyway). With the Zanubrutinib being in those ‘plastic’ type capsules, I’d always viewed them as quite contained and also a bit difficult to swallow at times!

I’ll certainly re-think this now.

Newdawn

[Tajie in reply to Newdawn]

The hand washing direction was in the Oncology Pharmacy brochure that came with the first batch of Brukinsa capsules. I never questioned the advice since it seems reasonable.

[Newdawn Administrator in reply to Tajie]

Yes it is certainly reasonable Tajie. I didn't receive a brochure or guidance on taking the tablets. I was just given a prescription and told to collect them which my husband did because it was at the other side of the hospital.

Newdawn

[Sepsur in reply to Tajie]

I was also warned about having ‘unprotected’ intercourse - I’m guessing this was for the same reason

[Spark_Plug in reply to Sepsur]

I don't think those pills will make you pregnant.🤔

[Tajie in reply to Spark_Plug]

LOL!!!

[Sepsur in reply to Spark_Plug]

🤣🤣🤣 - Both of us /were in our mid 50’s - I’d understood that Venetoclax was the more problematic with regards to my partner’s potential health risks than ibrutinib

[AussieNeil Partner Administrator in reply to Sepsur]

There's a good discussion on treatment drugs in bodily fluids in this post: healthunlocked.com/cllsuppo...

Some of our members do need to consider the risk of pregnancy for them or their partner during treatment.

Neil

[Skimom]

I am waiting for this trial to open near me. Thank you for your encouraging review. Happy remission!