I posted a while ago about my liver enzymes raising and I received some helpful and supportive comments.
Attended clinic yesterday and apparently I now have auto immune hepatitis! Basically my body is attacking my liver and it’s severely inflamed.
I have to stay off the Palbocylib and am awaiting to be seen by a liver specialist.
I am so fed up it’s one bloody thing after the other and I am so sick of being sick. The Palbocylib has probably caused this but of cause they will never admit that. How can I deal with a sick liver, cancer and an autoimmune condition. Talk about being dealt a rough hand.
I have to keep going for my 15 year old daughter but honestly I don’t have the fight to deal with this on top of everything. I am still having my fulvesterant injection monthly but other than that nothing for the cancer. My father passed away two weeks ago so 2025 has started off extremely bad God knows what the rest of the year will bring and whether I even live. Extremely down and fed up.
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BritSammy
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I’m sorry Sammy that you’ve had such a horrible start to the year.
I had liver inflammation from Afinitor but once I stopped that my liver started feeling a whole lot better. It’s back to normal and has been for a long time (2017). It’s a rare side effect but once the medication is ceased things turn around quickly. Maybe that’s what will happen to you too.
Stay strong. It is hard to stay motivated when the going gets tough. This journey has a lot of bumps along the way and some days it’s very bumpy! But we’re all stronger than we think.
my enzymes are high as well been on a break from kisqali for a couple weeks now , it’s only been my second cycle , I’m confused did your dr put you back on same meds and liver resolved or did they switch up meds
Hi Lindoky, I had a very similar reaction to Kisqali. After a few months med free my enzymes came down and I was switched to Ibrance which continues to work still.Any questions I can help you with try messaging me directly and I'm happy to help.... same to you Britsammy .
Thank you , mine are still high they’re slowly dropping it will be 4 weeks on Wednesday that I’ve been off Kisqali , the dr said I’ll start ibrance once liver is normal I’m nervous and hope it works and super nervous that the only treatment in the mean time is fulvestrant,hope scan comes back ok next month
In the time I was off all meds I had no progression at my next scan...and my bone mets are pretty extensive!I was on letrozole only for a few months after my med free time... then switched to ibrance.
Oncologist reassured me that since my tumours are hormone based the hormone therapy would be adequate and in fact some people....in milder cases ....are on that alone.
I'm so sorry you are dealing with all of this. That is a rough hand to be dealt. I hope the liver specialist has a good solution for you. In the meantime, I am sending you hugs and prayers.
So sorry you are having to go through all this! Things change all the time, so this will also not last forever. It’s hard to keep having hope, but know that we are all sending positive vibes and wishing for the best outcomes.
So sorry you've had such a crap start to the year!!
It's frustrating and confusing and I know what you mean about the odd responses we get from our doctors!! Stay strong for your daughter! My son was about 17 when I was diagnosed almost 4 years ago...right in the middle of his A level exams and the added complications of covid etc....but in the time since then he got through the exams great and is at a top uk university now...
It can take some time to get the liver enzymes back down. Try and drink lots of plain water, 2-3 litres daily. Eat small light meals, avoid fried stuff. Keep off any OTC meds, vitamins, supplements and no alcohol at all. Try and keep calm, I know it's really hard but try walking in a local park or doing a light exercise class....it's a more beneficial state for the body to heal if we're calm. This is just a bump in the bigger picture of your cancer treatment. Things will get back on track and you will get on to another treatment soon don't worry!
I was off all meds and hormone blockers for a few months and the scans still showed no progression and I was fine on my next treatment and my liver enzymes have been fine ever since.
I hear you! I’ve been absolutely fed up this week as well. So TIRED of fighting more than one illness at a time. Absolutely spirit wrecking feeling. Please try to take a huge breath, push it all out of your head and do something you enjoy. Let it all go, if only for a while. It’s hard getting through this on a good day, much less when things pile up. Be kind to yourself, you’re doing your best and your daughter does need you. One step at a time. We are so lucky to have this forum. Hopefully the specialist has some answers and can turn this around for you. Wishing you all the best!
He is in his late 70s or early 80s and has breast cancer but I think he can't relate on an emotional level. And his comment was unwarranted and hurtful. Thank you for reporting him.
This is certainly a difficult journey. I hope you have gotten some encouragement from the ladies who responded with a similar situation. Hugs and prayers.
Ao sorry about your loss and the health problems you’re going through. Are you liver enzymes still elevated even though you stoped palbo November? Did you have a consulting with hepatologist? What takes them so long? Any treatment you received for immune mediated hepatitis?
My enzymes continue to rise even off the palbo since November. My doctor just repeats bloods every two weeks and I now have a PET scan booked for a couple of weeks time. Still no appointment with a hepatology doctor. I am going to chase this up as I have been waiting for too long. Thank you for your reply. X
BritSammy; Please hang in there!! Just continue to cling to hope that you are strong enough to handle whatever this body does to us! I, too, am sick of being sick. I was diagnosed with Metastatic Bone Cancer in Jan 2015. That Oncologist said I had 3 to 4 years to live. It has been 10 by God's grace. I currently take Ibrance,, or Palbociclib, and Fulvestrant. Last month, the CT showed some junk in my liver and they don''t know if it's anything or not. Having another CT next month to try to get clearer pictures. In 2022, before I went on Palbociclib, I was diagnosed with a rare inflammatory disorder called Dermatomyositis. They don't call it auto-immune because they don't know what causes it but they say it is similar to Lupus. I have not had any side effects from Palbociclib/Ibrance and I've been on it since 2023. I know life is hard and sometimes I hate every second but you have a child to be strong for. I will pray for you and your child tonight and every night. God Bless You!
Thank you for your support. It is by the grace of God why I am still here and I am grateful for my life but I just wish I didn’t have so many challenges! You are doing amazing with your treatment long may it continue ❤️
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