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kymbo's avatar
kymbo
Member
2 years ago

Newbie and a question re liver issues.

New here, so first post šŸ˜Š I was diagnosed in November last year with HER2 + BC  with lymph node involvement, and while not struggling so much with chemo so far, apart from last one in round 1 (but for other reasons), Iā€™ve had a few ā€˜ curve ballsā€™ thrown at me along the way.
I had the first 4 two weekly rounds with the ā€˜red devilā€™ ( which I chose to call ā€˜angelā€™) but a large clot firmed near my portacath when it was placed (itā€™s also in the right chamber of my heart) so now on blood thinners and unsure what will happen come surgery in June if it hasnā€™t dissolved by itself! It is an unusual  thing to happen, so go me! Iā€™ve never had clots before, am a fairly fit 64 yr old and have never even had problems with swollen feet on planes. Go figure šŸ¤·šŸ¼ā€ā™€ļø
Then, after my fourth go at round 1, I became incredibly tired, and basically slept for 4 days. I became so weak, that I passed out and ended up in a wheelchair for several days. My oncologist put me in hospital for hydration and blood transfusions where they discovered I had a major lung infection called PJP. I was in hospital for 2.5 weeks on IV antibiotics and was even oxygen dependent for about 4 days. A very sick girl! So I think the problem wasnā€™t as much the chemo, but the infection that was lurking for weeks - Iā€™m guessing the chemo didnā€™t help, though. 
The good news is that even though I missed four chemo sessions, my lump had reduced greatly from originally 37 mm to 27 mm (just after the fourth dose ) to now 18 mm. Depth and width also less, so Iā€™m glad that nasty round did itā€™s work! Lymph node also smaller than last time. 
The question is, has anyone experienced any liver enzyme level problems? Iā€™ve just done round 2 of my 12 week regime with wk 1 being a mixture of Perjeta, Herceptin (Trastuzumab) and a Taxol. Blood test from the first  one showed levels twice as high as they should be. The oncologist came and said ā€˜all fine to go ahead, as this level is ā€˜grade 1ā€™ Grade 2 is apparently 5x and Grade3, 10x. If levels go up, they will reduce the meds. 
My big concern is of course is that if this happened in wk 1, what on earth would it be like by wk 12? The first two drugs are only given every four weeks, but I believe I have them later as well after radiation therapy. 
These are the drugs attacking the protein and making it less likely for return, so biggest worry is that I wonā€™t be able to  have them at all. 
Iā€™m just wondering if anyone has had a similar experience? 
Sorry such a long post, but Iā€™m tired  of these ā€˜curve ballsā€™ šŸ˜•
  • Sorry, I canā€™t help much other than to say that in my experience liver enzymes can jump around a bit. A virus can cause rises so presumably lots of other things can too. A rise, not dramatic, but unusual, in my liver enzymes sent me off for tests for fatty liver! Which happily I donā€™t have - my liver, kidneys and spleen are apparently in good shape. Your problem may be one that is resolved by time. Best wishes.
  • Afraser said:
    Sorry, I canā€™t help much other than to say that in my experience liver enzymes can jump around a bit. A virus can cause rises so presumably lots of other things can too. A rise, not dramatic, but unusual, in my liver enzymes sent me off for tests for fatty liver! Which happily I donā€™t have - my liver, kidneys and spleen are apparently in good shape. Your problem may be one that is resolved by time. Best wishes.

    Thank you! I appreciate your positive comment šŸ˜Š
  • @kymbo - you've had a particularly hard time of it xx.   I am glad your lump has reduced appreciably in size. 

    The only time that I am aware my Liver Function test went thru the roof was some years ago when I had a fairly severe hip injury & I was diagnosed Vioxx anti inflammatory tablets to help 'fix it' - and instead - it almost caused me liver failure.   My GP thought I was a secret drinker - til we narrowed it down to the Vioxx Script! 

    Have you been on any sort of anti inflammatory meds at all - recently before or since your diagnosis?

    Keep a diary of everything you 'feel is changing' - and I hope that your journey ahead is an easier one xx
  • @kymbo I hope youā€™re feeling a lot better after your roller coaster curve balls and lung infection.
    Similar to the comment made by @Afraser it seems liver function numbers do fluctuate, and like your oncologist, my oncologist keeps an eye on them and also said sheā€™s not too worried - theyā€™re within a safe range as far as sheā€™s concerned. 
    Iā€™m HER2+ and yes, had the targetted therapies, Herceptin and Perjeta, combined with a taxane (DoceTaxel) and carboplatin pre-surgery. I am still in active treatment- and will have the 16th dose on Friday (nearly done! šŸŒ»šŸŒŗšŸ˜Ž). My blood test is done ahead each time so my oncologist checks liver function amongst other things. I feel confident my oncologist would take a precautionary approach if anything was awry with my liver function, she is always open to my experience of the treatment, and adjusted the dose down by 10% after round two (because of other non-liver related side effects).
    On the upside that is brilliant news about your treatments to date shrinking the tumour!!! All the best for smashing the blood clot and recovery from your infection. 
  • @kymbo I'm so sorry you've been through so much, I can't really give much advice as I didn't have to have the chemo, but my liver function tests di show my liver enzymes were up high, but I think they were caused from some herbal supplements I was taking, just wondering do you take any supplements at all?
    Good luck with it all, you sound like one tough cookie :)
    Cindi x
  • arpie said:
    @kymbo - you've had a particularly hard time of it xx.   I am glad your lump has reduced appreciably in size. 

    The only time that I am aware my Liver Function test went thru the roof was some years ago when I had a fairly severe hip injury & I was diagnosed Vioxx anti inflammatory tablets to help 'fix it' - and instead - it almost caused me liver failure.   My GP thought I was a secret drinker - til we narrowed it down to the Vioxx Script! 

    Have you been on any sort of anti inflammatory meds at all - recently before or since your diagnosis?

    Keep a diary of everything you 'feel is changing' - and I hope that your journey ahead is an easier one xx
    Thank you for taking the time to comment!
    No inflammatory meds, but I was on very strong antibiotics (part of it double dosed) for 21 days, so wondering if that could have something to do with it.
    I definitely keep a diary and it's become invaluable, as I forget very easily! :)
    Thanks again!
  • Tri said:
    @kymbo I hope youā€™re feeling a lot better after your roller coaster curve balls and lung infection.
    Similar to the comment made by @Afraser it seems liver function numbers do fluctuate, and like your oncologist, my oncologist keeps an eye on them and also said sheā€™s not too worried - theyā€™re within a safe range as far as sheā€™s concerned. 
    Iā€™m HER2+ and yes, had the targetted therapies, Herceptin and Perjeta, combined with a taxane (DoceTaxel) and carboplatin pre-surgery. I am still in active treatment- and will have the 16th dose on Friday (nearly done! šŸŒ»šŸŒŗšŸ˜Ž). My blood test is done ahead each time so my oncologist checks liver function amongst other things. I feel confident my oncologist would take a precautionary approach if anything was awry with my liver function, she is always open to my experience of the treatment, and adjusted the dose down by 10% after round two (because of other non-liver related side effects).
    On the upside that is brilliant news about your treatments to date shrinking the tumour!!! All the best for smashing the blood clot and recovery from your infection. 
    First of all, congratulations on almost finishing the chemo part!! I'll be having my 7th at the same time as you will be having your 16th!!! That is so exciting.
    Did you end up with peripheral neuropathy? Also did you wear ice gloves and socks? (I started to on my 2nd treatment of round 2, and hoping to avoid, but with my track record so far, I'm a bit sceptical that I will!!) 
    I too have a blood test every week (next is tomorrow, and it will be interesting to see if it has moved-my guess is that it will be similar, as I think the combination may have done it and maybe the Taxol dose last week didn't affect it too much more, time will tell!) and I do know that they will keep a close eye on all of that and adjust when necessary. My fear of course, that it will go so high that I can't take my life-saving drugs at all. The bc nurse phoned me yesterday and put my mind at ease a lot. She was explaining how everybody metabolises things that go into their body differently - some people can drink a bottle of spirits, without it affecting them too much (who knew?? LOL), while others can be greatly affected by a glass of it.
    She said that my body went into overdrive accepting these drugs and they will give me what is appropriate for me. She said it doesn't matter if less drug/chemo-it will be what is right for my body. She made a lot of sense. 
    Now to smashing that damn blood clot before surgery in June! 
    And yes, I can feel that the tumour has shrunk even more since these first 2 treatments, round 2. Yay!

    Good luck with it all! What a ghastly ride, but we'll get there eventually!! :)
  • Cindi said:
    @kymbo I'm so sorry you've been through so much, I can't really give much advice as I didn't have to have the chemo, but my liver function tests di show my liver enzymes were up high, but I think they were caused from some herbal supplements I was taking, just wondering do you take any supplements at all?
    Good luck with it all, you sound like one tough cookie :)
    Cindi x
    Thanks for your comment, Cindi. No herbal supplements, but that's an interesting one. I guess all kinds of medication/supplements can have an affect on your liver. 
    Thanks also for the good vibes and I have to admit that when I was in hospital, I wasn't always a tough cookie, but have bounced back pretty quickly :)
    Kym
  • Hi @kymbo thanks for your lovely reply šŸ˜Š especially about getting to the 16th treatment - it is great to be in solidarity - I hope your 7th goes well too!
    Yes, I do have peripheral neuropathy - in the toes and balls of my feet and mildly in my fingers. It flared up pretty well from the start, my feet and hands looked and felt like they had been sunburned! They continued to look rough for a couple of months, and I do have ongoing sensitivity issues so if the socks and gloves are available to you during treatment go for it!  Having said that, I have four or five friends locally who had treatments for BC in the last 2-3 years and none ended up with peripheral neuropathy. So 100% agree with your insight that we all tolerate drugs differently. 
    My oncologist reduced my dosage after my 2nd treatment to counter the taxane (DoceTaxel) which she considered was the likely culprit in causing my neuropathy. 
    I hear your concern about what happens if these great targeted drugs are not something you can tolerate over the long term. Thatā€™s completely understandable and I had considered it, but more as a hypothetical. I was encouraged when an oncologist friend said not to feel itā€™s ā€œone size fits allā€ with the drugs, because in addition to adjusting the dose, thereā€™s also a range of alternative drugs that might be substituted. They might be less routinely used but they are also effective and can be substituted if a particular drug isnā€™t agreeing with us. 
    I am feeling grateful to have made it this far without the need for alternative drugs arising. 
    What comes through your messages is that youā€™re really connected with whatā€™s going on for you and your curious in a good way about your treatment. I think thatā€™s a gift for your treating team, as they can fix things if they know about it. It is just fantastic that at this stage you can see the effects of the treatment so far and itā€™s working hard on your tumour too. Amazing!
    Go well tomorrow, I will raise my cup of tea in a virtual salute!