Can treatment cause death?

[1Lostgirl]

My mother was diagnosed with CLL 3 years ago. Her WB count was 19K. She goes every 6 months to get checked and 2 months ago it jumped to 98k. The Dr wants her to start treatment but she is refusing. She is 74 and otherwise in good health. This fall I noticed she is bruising easily. She is also fatigued and swollen lymph nodes.

Her reasoning for not doing treatment is that back in '83 her mother was diagnosed with Waldenstrom macroglobulimia. After her first chemo treatment she died and the Dr didn't know why. Anyone gone through treatment and had any problems with it? Her Dr said it isn't really considered chemo. So I'm confused.

[AussieNeil Partner Administrator]

What treatment has your mother been recommended? It sounds like it might be Ibrutinib, which is not a chemotherapy treatment.

With regard to treatments causing death, there are statistics from clinical trials that report the side effects - including any deaths, but these are rare and more likely to happen in the early clinical trial phases, when much is unknown about how patients may react to the treatment.

With respect to your mother's doctor recommending treatment, a WB count reaching 98k is not a reason for starting treatment, but enlarged lymph nodes and falling platelet levels sufficient to cause bruising may well be. Read this pinned post for more on this topic:

healthunlocked.com/cllsuppo...

Neil

[Jm954 Administrator]

I can't add anything to Neil's excellent reply other than to say that Waldenstrom's macroglubulinaemia is a very different disease.

Although it is still a B cell malignancy your mother's experience should be very different to her mother's both because the treatment will be very different (35 years worth of advances) and also because Waldenstrom's is much more difficult to treat with a greater risk of serious complications because of the hyperviscosity syndrome that is associated with it.

Please discuss these fears with her Dr so that s/he can reassure your Mom when the time comes for treatment.

Best wishes.

[patsullivan in reply to Jm954]

My 3 years on CLL watch and wait ended when my lymph’s rapidly became tumorous.

Started 6 mo clinical trail at UCSD w Kipps and Choi

My Ga-101 infusion plus 420 ml ibrutinib within days reversed the SLL proliferation .

No hair loss and mild reaction..bone marrow Went from 50% to .03%

[thompsonellen]

If she were my mom, I would urge her to start treatment. If they are giving her ibrutinib, it's 3 pills with very modest side effects. If she doesn't get treatment, she will continue to feel worse. In my case, I would have literally died with treatment (and I'm 25 years younger). For me, it was a no brainer to choose life. I hope she does, too.