If I Knew what I know now

[wilhoitaz]

69 year old male with CLL--began treatment 3 years ago-Imbruvica {3x140 mg}-Learning as I go--

I believe I did the W&W longer than I needed --I should of been lobbying for treatment perhaps a year before-I of course didn't know that I would do as well with Imbruvica--now better than a year in Remission--the horrific fatigue took another 6 months to die down.

Down to two capsules now-Imbruvica

Got covid 3 months latter non vaccinated got rid of most of it in 6 days-Lungs hung on for two more months and the fatigue still with me again-confidant that fatigue will work its way out again-bi annual GP checkup and blood last week all is very good

Not indicating that my knowledge is on par with my hematologist--don't believe that my blood needed to deteriorate as far as it went-we just didn't discuss the timing until he said now is time

[Hidden]

If you don’t mind my asking, what was your white blood cell count and absolute lymphocyte count when you started treatment? Also, were there any other issues besides fatigue that indicated you needed to start treatment? The fatigue is really crazy for me, but also now a lot of lower back pain, etc. I have a chronic sinus infection and seems like I’m taking an antibiotic all the time. I was diagnosed in 2015 and I will turn 57 this month.

[wilhoitaz in reply to Hidden]

500,000--then over 6 first month of Imbruvica

[AussieNeil Administrator]

Over the years, I've seen quite a few instances when oncologists, unfamiliar with how very rare complications are with even extremely high lymphocyte counts with CLL, recommend treatment on the basis of the lymphocyte count exceeding 100(,000). If they don't have many CLL patients, they tend to take a generic approach to treating CLL as just another B-cell lymphoma. CLL/SLL (Small Cell Lymphoma) are very small white blood cells, being nearly all nucleus and just slightly larger than a red blood cell. No CLL treatment guidelines recommend starting treatment on the basis of exceeding a lymphocyte count, just doubling time.

From 2003, Pulmonary complications in chronic lymphocytic leukemia acsjournals.onlinelibrary.w... with my emphasis:-

...there were 636 hospital admissions of patients with CLL over the period of 9 years. Among those 636 admissions, 110 eligible patients were identified, accounting for 142 admissions.

:

Pulmonary leukostasis was suspected in five patients. It usually is associated with an extremely high leukocyte count, may present with pulmonary infiltrates, and can mimic pneumonia. Unlike acute leukemia, symptomatic leukostasis is rare in patients with CLL. The lung and central nervous system are the two major organ systems that are involved, usually attributed to capillary sludging of leukemic cells. Leukopheresis is recommended to prevent hyperviscosity complications when the leukocyte count exceeds 500 × 109/L.

Neil

[RSilver in reply to AussieNeil]

Thank you Neil

[wilhoitaz in reply to AussieNeil]

Neil--I just loved my Doctor-I believe he thought that I wanted to hold out as long as possible-perhaps fearful of treatment-he is retired now-that i have had time to consider my situation- and read where others started earlier--in some cases the longer without treatment the more damage--not in mine-I landed on my feet-handled Covid without vax in 6 days--not recommending anything to anyone--just something to ponder

[AussieNeil Administrator in reply to wilhoitaz]

There's definitely an optimum treatment window with CLL and it stands to reason that a specialist who has treated lots of CLL patients will be our best guide regarding the best time to start, given in particular, the heterogeneous nature of CLL. The window period depends on the rate of change of the factors triggering the need for treatment and how the patient is likely to respond to the treatment. If your bone marrow infiltration is beginning to dramatically impact blood cell production, I'd expect the window to close faster than if it was spleen or node size, fatigue or lymphocyte doubling time that triggered the need for treatment. Likewise, the window would probably remain open longer for a fast acting, vs a slower acting treatment.

Neil

[SofiaDeo]

Sixtyish, I don't know where you are geographically because it's not in your profile, but in the US I believe you have the legal right to test results. This may not be true for every state, but a few I have worked in, the patients all have the right to see their chart. And when I have had docs who have the "holier than thou" "doctor is God, don't question" attitude, I changed docs. I know this is not always an option, but if it is, maybe consider it. The hem-onc I just lost to her out of state move, wanted and welcomed not only CLL specialist input, but mine as well. Keep searching for a different doc if you can!

[RSixtyThree in reply to SofiaDeo]

I believe its a legal right to obtain test results in Canada too.

[Annie1920 in reply to RSixtyThree]

And the UK.. But I had to do battle with nurses to get mine while I was on Obinutumazab

[wilhoitaz]

Thank you so much--life choices and habits really affect your overall health--my health before and after treatment initialization is and was good BP 120/60 -no smoker-non drinker-blue collar all my life-my passion was to produce as much or more than those working with me--actually began my social security retirement process today -age 69--some asked- I live on a small farm in central highlands of Arizona-foothills of the Bradshaw mountainsMust be clear my Doctor saved my life!

[wilhoitaz]

Wish you well!