CLL

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  • mken03
    mken03 Member Posts: 4
    edited August 2016 #22
    Ajohn said:

    CLL caused FGN

    Happy to find a site like this and wondering if there are folks here with fibrillary glomerulonephritis (FGN) caused by CLL.

    My CLL was officially diagnosed in late 2012; however I suspect it was active a full ten years earlier when I told the lump on my neck was a benign tumor. Three weeks ago my creatinin took a big jump and off to a kindney doctor I went. After many labs and a biopsy, I now have been diagnosted with FGN, which is indeed rare, occuring in less than 1% of kidney desease patients. The kidney damage is permanent and I was told by my nephrologist and oncologist the only way to stop deteriation of the kidneys is to control the CLL, which to this point was only being monitored twice a year. Now with some urgency to prevent additional damage to kidneys I will start Ibrutinib next week and have a question for the community:

    1. Anyone out there with Ibrutinib experience and if so what is your personal experience?

    The drug manufacturer's website has to name every possible side effect, it can be very dishartening; the doctors seem to think it my best option that will require me to take the drug from this point on.  

    Thanks for a reply...

    Ibrutinib and CLL transformation

    Yes i have experience with Ibrutinib. I did not have any side effects from it at all.  Its all personal I understand but I did not have issues.  

    On the subject of CLL transformation, I was being treated for my CLL which after "watch and wait" required treatment based on counts and swelling of lymph nodes.  The treatment was really successful until it transformed into lymphoma.  

    good luck.  let me know if you have any questions i can answer further. 

     

  • trailtrimmer
    trailtrimmer Member Posts: 1
    edited September 2016 #23
    CLL and green tea

    First post here. I read about the CLL study using Green Tea extract that was conducted at the Mayo Clinic. On average, study participants showed a 20% decrease in white cell count as well as a measureable reduction in the size of affected lymph glands. I was diagnosed with CLL in 2014 with an initial reported white cell count of 29. Counts at 3 mos intervals since then were 31,39, 49 (held for 2 clinical visits, then an increase to 59. I then started with the green tea and over a 3 month period my WC count increased to 88. BTW: I am a 72 yr old male who is otherwise asymptomatic clinically and I continue to exercise regularly with no fatigue. Since my last visit to the oncologist, I have read that green deal is also used to boost the immune system by...RAISING white cell counts. I'm assuming that blood tests cannont discriminate between healthy white cells and  CLL impaired cells. I have since stopped taking the green tea extract. Any thoughts or comments would be greatly apreciated.

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