Liver damaged by CLL soon since beginning

Hi All, I'd like to share my concerns with you guys, as I am worried that my CLL which was diagnosed last February - has affected my liver, a biopsy showed CLL is my liver . I was in stage zero, now I am in stage 1. It's a rare case, there are three lesions in my liver, I often get pain, worried too much, other blood counts are still within the normal range, my CLL is stable, but a liver function test showed some abnormality, three enzymes are higher than normal - there is some liver damage caused by CLL, no medication yet, next test after 3 months, no surgery to remove these lesions as it is risky. Please write to me I still don't know much about this disease, trying not to think about it, but it's not easy. Thank you, Ezabelle

11 Replies

oldestnewest
  • Hi ezabella,

    Spleen and less often liver enlargement is fairly common with CLL, which is why liver enlargement is specifically mentioned in staging criteria and why you've advanced a stage with the finding that your liver is affected by CLL. From the Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia: a report from the International Workshop on CLL Dec 2008, section 2.2, with my emphasis:

    Patients with lymphocytosis, enlarged nodes in any site, and splenomegaly and/or hepatomegaly (lymph nodes being palpable or not) are defined as having intermediate-risk disease (formerly considered Rai stage I or stage II): bloodjournal.org/content/11...

    (Hepatomegaly just means an enlarged liver.)

    Raised liver function tests can mean that your liver is finding it difficult to process something you are eating, drinking or taking - whether it be a prescribed drug or even an over the counter drug or health supplement. Liver function tests can also be raised for reasons unrelated to your liver, or could indicate damage to your liver. But with regard to your lesions, please note that 'Benign liver tumors (BLT) are extremely frequent, varied, and mostly asymptomatic' : medscape.com/viewarticle/81...

    So in my non medically trained opinion, what you have is not rare for a CLL patient and is most likely not something you should be alarmed about. But you should share your concerns with your GP and perhaps your CLL specialist, just in case you can improve your liver function by changing a prescription, ceasing to take over the counter medications or supplements or perhaps even by making a simple change to your diet.

    I'm sure many of us will be interested in what your GP/specialist says, so please let us know what they decide.

    Neil

  • Hi Neil, thank you for these information, I will discuss with my GP on 8 November and share it with our CLL community, next appointment with my Haematologist after 3 months in January 2017, he expects that no much change in Liver function till the next appointment.

    I've been taking iron and Vitamin D supplement since 6 weeks, as recommended by my GP cause my Ferritin dropped dramatically to 12 (Normal is between 15-200 in Australia), and my Vitamin D is 50 - the normal shouldn't be below 75. I also drink once a day organic green tea.

    Thank you Neil for your assurance, I am impressed by the level of knowledge you have, glad to have you within our CLL community.

    Cheers,

    Ezabella

  • What you mention should not cause liver problems and I see you've stopped taking other supplements since you last raised your concern about your liver: healthunlocked.com/cllsuppo...

    It can take some months for your liver to recover, (it's the only organ that can regrow after chemical damage or surgery en.wikipedia.org/wiki/Liver... ), so I hope your liver function test results are improving and continue to improve and if not, that your GP can give you some helpful advice on what to do.

    On a related matter, there is a recognised condition called Chinese Herb Neuropathy, from an incident in the 1990's where 9 young women suffered kidney failure after being encouraged to take a mixture of Chinese herbs to help with weight loss. A follow-up identified a total of seventy cases, thirty of whom had died totally unnecessarily. The cause was found to be Chinese remedies with Aristolochic Acid, which can be found in Aplotaxis, Aucklandia, Stephania and many more herbs. In the late 1990's the Aristolochia herb was also linked to cancer.

    ukidney.com/nephrology-pres...

    Neil

  • Hi Neil, I didn't know that Chinese herbs could kill, good to know these information, I am just taking iron and Vitamin D for three months. However, a biopsy for liver confirmed that CLL has been populating into my liver, and there are 3 lesions sized 6mm, 14.5mm and 15mm, no surgery to remove these lesions as it's risky, and the main cause is the CLL, but for now can't do any chemo treatment as long as blood counts within normal range, I don't feel it's enlarged - but I do feel some pain which lasts for few seconds and occurs several times a day. First time came to know about abnormal function in June 2016, since then I am regularly doing LFT.

    My recent results for liver:

    Globulin 36 g/L (Normal range 23-39)

    ALP 151 U/L (it was 171 in June 2016) the normal range between

    (30-120) U/L

    ALT reached 41 ( the maximum threshold for normal should be any number less than 41). I am afraid it may keep rising !

    LD 185 U/L (Normal 50 - 280)

    What do you think of these results? are they something worrying?

    I am doing some healthy drinks, such as ginger with lemon, tumeric with lemon, cumin tea, grean tea.

    Regards,

    Ezabella

  • I'm not medically trained, but I gather that liver function tests can go multiple times above normal without too much concern. You really should discuss this with your CLL specialist.

    Meanwhile, you also need to consider that normal ranges for blood tests vary between laboratories. My pathology lab reports the normal ALT range as being under 55 and I had results of 90 and 72 when I was inadvisedly taking over the counter supplements (including high doses of green tea), incorrectly assuming that was the right thing to do to improve my struggling immunity and slow my CLL progression. It took three months for my ALT to drop to 50 and a year for it to drop to my long term average. My AST also peaked and took 3 to 6 months to recover. My ALT has averaged between 20 and 35 for the last 5 years.

    My ALP hasn't been much higher than around 80. Raised levels can be caused by blocked liver biliary ducts. My LD is similar to yours.

    Don't get fooled by the indiscriminant use of the word 'healthy' when it comes to supplement marketing. If you haven't already done so, read the article Cllcanada referenced. Everything you eat or drink needs to be handled by your liver and quantities matter. Our livers may be able to handle small quantities of herbs and spices without problems, but larger quantities, particularly with a liver infiltrated by CLL, may be more than our livers can handle. Just have minimal amounts of herbs and spices for taste and no more for 3 to 6 months to see if your liver function improves. I suspect you'll see your liver function improve if you end up needing treatment, but I also consider you are getting appropriate medical care in having your liver function monitored until other CLL symptoms suggest you need treatment. Again, I'm not medically trained, but I know from personal experience how so called 'healthy' or 'health boosting' supplements, readily available for purchase from chemist and health stores can seriously impact liver function, which can take months to recover after you stop taking the supplement(s). I'm also a non-drinker and eat a healthy diet, so I was most surprised to find how little it took to impact my liver function.

    Neil

  • You might want to stop the green tea... EGCG can effect liver function, depends on dose...

    livertox.nih.gov/GreenTea.htm

  • Hi Neil and ezabella

    To add to the Chinese herb mixtures, I went to a Chinese naturopath and had him make me a mixture that was intended to cleanse the body of CLL... I had to take this mixture for 1 month. After the first treatment with it, I got violently sick. One should be very careful of anything we put in our system, just because it is "natural" doesn't mean it is good for you...snake poison is natural....I learned the hard way...

    All the best.

  • Ezabella,

    I am 45, my mom is a bit crazy with vitamins and supplements. She wanted me to start several when I was diagnosed. I started to help reduce some of her anxiety about my health. I was not taking anything prior. My normal liver function labs went up immediately, the cancer center pharmacist had me stop 2 (chagga tea, and Vit C with rose hips). My liver labs were normal the next month. You might want to make sure a pharmacist reviews everything. It might just be CLL or something your body is not processing well and adding to an already stressed liver. I hope they figure it out and get them dropping back to normal....

    Nathan

  • Hi Nathan

    Thanks for your response, I am thinking to stop the Iron supplement by end of November, increased taking food with iron like green leafy veggies and red meat. I am anxious about these abnormal functions - my Haematologist advised when we treat CLL the liver becomes normal again. Now, he is monitoring after 3 months, so to decide the right time to start treatment which will be chemo (FCR).

    Regards,

    Ezabella

  • Yes, I know other CLL'ers with liver issues and few other symptoms. As a strong believer in a healthy diet (in addition to being vegan, I don't eat sugar, salt, grains, soy), I think it's great that you are considering dietary changes to be kind to your liver. The leafy greens sound good; increased red meat not so much. You might want to consider getting protein from beans and lentils.

    This web site, one of many that offers suggestions for diet for the liver, includes a list of foods to eat or avoid:

    liverfoundation.org/educati...

    As an added boost, I have been cleansing my liver and kidneys for 16 years, long before my CLL diagnosis, by drinking a tea I brew almost every day from fresh organic dandelion greens and burdock root. A few slices of fresh ginger root help sweeten it up a bit, as dandelion can be bitter. I don't know if it helped me not wind up with a damaged liver while in an Idelalisib trial, when all 20 other people did, but I figure it didn't hurt.

  • This is aging, aren't we all..... but still relevant

    updates.clltopics.org/2471-...

You may also like...