Chronic lymphocytic leukemia

[William1955]

Chroniclymphocytic leukemia

I have cll for about a year my last appointment my white blood cells when from 34000 to 65000 in 3 months my new Dr wants to start treatment infusion and one pill a day This is all new to me the problem is I feel great no symptoms so I don't know if I ned to start treatment or wait till I have symptoms

The treatment has no chemotherapy in it

Has anyone had this treatment

[Ginajetta]

See a CLL specialist. Usually WBC is not necessarily deciding factor to start treatment … platelets below 100 hemoglobin below 9, fevers, drenching night sweats, enlarged spleen are reasons they will recommend treatment. Diagnosed 2007 I’m unmutated, cd38, trisomy 12+ Not good markers. I started treatment in 2018 on imbruvica with wbc over 300,000!going up to 697,000 wbc,. Wish you the best.

[William1955 in reply to Ginajetta]

Thank you I do not have any system just trying to decide if I need treatment know or wait I ride a bike 60 to 70 miles everday

[Belfastbees in reply to William1955]

Keep up the exercise, good for the mind as well as the body and no reason to stop with this diagnosis. I'm w+w 2 years now and bloods only moderately out of line.

I recall a consultation with my haematologist where I had asked what would indicate if and when treatment would be advised. He stressed it was about how I felt personally as much, maybe more, than any chemistry they found in bloodwork. Of course there may be something in your bloods which suggest a clinical need for treatment but I would clarify that and if theres not I'd carry on as you are. Enjoy the ride!

[Jm954 Administrator in reply to William1955]

A doubling of your lymph count can mean your CLL is progressing but your count may fall back at the next test. One result is not generally an indication for treatment especially if you have had a vaccination or infection a short while (<1 month) before the test.

Trends are much more important and it would be sensible to wait until the next result in a few months to see what has happened. If it has nearly doubled again then treatment may be indicated but a high lymph count without other indications should not automatically mean treatment should be soon. I would want to see a further test after that to see if it has risen yet again.

These are the iwCLL guidelines for starting treatment which will give you lots of information which you can use as a basis for having an informed discussion with your doctor.

I hope this helps

ashpublications.org/blood/a...

Keep cycling, it can only be doing you good

Jackie

[William1955 in reply to Ginajetta]

What treatment did you take if I may ask

[Ginajetta in reply to William1955]

September 2018 started on imbruvica 280 mg. And so far still good n same drug.

[Phiphiminux]

Hi , I refused treatments 4 years and 8 months ago my lymphocytes went up to 283000 in 2018/19and last week they were at 148000. Hémoglobine is a little bit low now at12.9g/lI have an enlarged spleen , no lymph nodes, I’m fine!!!! My point of view is all treatments are chemo. They said it is not chemo but it is marketing.

I probably made a good decision with no treatment!! ??

Philippe

[Jm954 Administrator in reply to Phiphiminux]

The new drugs such as ibrutinib and venetoclax are most definitely not chemotherapy.They are molecules that target important survival pathways and disrupt them, leading to the death of the B lymphs. Chemotherapy is a general, scatter gun, attack on the whole body.

Jackie

[Phiphiminux]

Are they made with plants ?

[Jm954 Administrator in reply to Phiphiminux]

No, neither made with plants.

Ibrutinib was created by scientists at Celera Genomics as a tool compound for studying BTK function and it was realised it could perhaps be used therapeutically.

Venetoclax was developed based on a landmark discovery in 1988 by Walter and Eliza Hall Institute scientists when they found that a protein called BCL-2 promoted cancer cell survival.