Got the bad news for my mom yesterday. She's got CLL and is probably well past stage 0, given her symptoms, but we won't know how far along it is until her PET scan in 4 weeks.

I'm curious to know what the experience is like for someone going through it so we can get a better idea of how we will be called upon to care for her and what the end might look like for her. I know everyone is different, but I also know how much easier it was to care for my MIL with dementia after caring for my dad for 12 years with ALZ.

Info on the web is all over the place or non-specific, and the doctors haven't been of much help so far. Any insight is greatly appreciated.

Sorry to hear RTT. I don't have anything to offer but empathy and encouragement to have strength for your mom.

Dad had it. It's very treatable. But it's something that never really goes away. My dad had several bouts of it. First time, in the late 90's, the chemo was actually pretty rough on him. The second and third times the chemo had advanced quite a bit, and it was very well tolerated (rituximab). Since then, I do think there's now an oral medication (ibrutinib).

The five year survival rates for CLL in general are quite good: roughly 85%. Many of the people with long term survival are in lower risk groups and are followed with watchful waiting alone.

As with many cancers, one can offer a much more accurate prognosis of how the disease is likely to progress on the basis of staging and molecular genetic markers. (OP, do you know if your mom has anemia, or low platelet counts?)

When death occurs from CLL, the cause may be either infection or progressive complications of low blood counts. A substantial number of people with CLL will die of something else before the leukemia kills them.

bigtruckguy3500 said:

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Dad had it. It's very treatable. But it's something that never really goes away. My dad had several bouts of it. First time, in the late 90's, the chemo was actually pretty rough on him. The second and third times the chemo had advanced quite a bit, and it was very well tolerated (rituximab). Since then, I do think there's now an oral medication (ibrutinib).

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The oncologist said they almost rarely do chemo for it now because it's incurable and the chemo only degrades the patient's quality of life. They will only treat the symptoms.

Slackjaw62 said:

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The five year survival rates for CLL in general are quite good: roughly 85%. Many of the people with long term survival are in lower risk groups and are followed with watchful waiting alone.

As with many cancers, one can offer a much more accurate prognosis of how the disease is likely to progress on the basis of staging and molecular genetic markers. (OP, do you know if your mom has anemia, or low platelet counts?)

When death occurs from CLL, the cause may be either infection or progressive complications of low blood counts. A substantial number of people with CLL will die of something else before the leukemia kills them.

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Mom is having a scan done next week to determine the spread. She is already a breast cancer survivor, but I'm not aware of any issues that would suppress her immune system. She does happen to be diabetic.

Ryan the Temp said:

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bigtruckguy3500 said:

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Dad had it. It's very treatable. But it's something that never really goes away. My dad had several bouts of it. First time, in the late 90's, the chemo was actually pretty rough on him. The second and third times the chemo had advanced quite a bit, and it was very well tolerated (rituximab). Since then, I do think there's now an oral medication (ibrutinib).

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The oncologist said they almost rarely do chemo for it now because it's incurable and the chemo only degrades the patient's quality of life. They will only treat the symptoms.

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I'm no oncologist, but I think what he meant is traditional chemotherapy, which are generally toxic drugs that are quite debilitating. I used the term to reference current therapies and the recent ones my dad went through, which aren't traditional chemotherapy, but more like monoclonal antibodies or cell growth modulators called tyrosine kinase inhibitors. Both are fairly well tolerated.

I'm an oncology nurse & we treat CLL pretty much everyday.

Looks like they are using mom's scan as a baseline. She has some abnormal lymph nodes in multiple locations and they want to see how things progress over the next six months. Essentially it sounds like they don't plan to do much other than wait and see.