I sailed through days 1 to 6 on my first cycle of Enhurtu, Then woke up Day 7. Severe headache, back pain, aches. I thought I was going to die .... I even hoped I would die.Is this the way it's going to be now?
A bit of a double whammy for me as last week I was told all my chemo treatment had caused pseudo cirrhosis of the liver!
Pseudo cirrhosis.... cirrhosis caused by chemotherapy . I'd never heard of it before last week
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Andersl
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I have had one cycle. I was told day 4-9 the steriods wear off and days 4-9’pr 10 is when Enhertu drops its payload so to speak. I was fine until day 6 and also had back pain in the ribs. My onc says that can happen - mention it to them tho! Too
Much back pain can show something is wrong. Facebook has an excellent Enhertu Facebook page !
Oh so sorry to hear about the Enhurtu making you feel so terrible, sending you virtual hugs! I never heard that chemo could cause pseudo cirrhosis of the liver either, ugh! What were the previous chemo treatments you were on. Thinking of you and sending positive vibes, blessings 🙌 ❤️
Thank you for your kind message.I've had Doxetaxol, trastuzamab, kadcyla and now Enhertu.
The risk for pseudo cirrhosis is in Breast cancer patients who have had liver involvement that's been treated with chemo.. from what I've read it's quite rare.
I don't know much about different chemo drugs, hopefully the others weren't as bad. I am going on 1st chemo Taxol after 1st line Ibrance/Letrozole. I didn't expect it to be the next line, thought maybe another targeted & hormone therapy. Seemed like jumping to the 'big guns', but MO said its the next std of care treatment. Sending positive vibes you can get over this hump with Enhurtu 🤞🙏🙌❤️
I had not heard of pseudocirrhosis I googled it and found this:Pseudocirrhosis as a complication after chemotherapy for hepatic metastasis from breast cancer
Woo Kyoung Jeong,corresponding author1 Seo-Youn Choi,1 and Jinoo Kim2
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INTRODUCTION
Pseudocirrhosis is a radiologic term that describes the serial development of diffuse hepatic nodularity caused by chemotherapy for hepatic metastasis, especially from breast cancer.1,2 It is characterized by morphologic changes mimicking liver cirrhosis following chronic liver diseases, such as multifocal capsular retraction and enlargement of the caudate lobe, and is a potential cause of portal hypertension and hepatic failure.2,3
GOOD NEWS:
However, the patients with pseudocirrhosis do not unusually show the clinical features of true cirrhosis.
Thank you for your kind and comprehensive response.I wish I hadn't developed this. Looking back I recall starting to get pain in my liver earlier this year but there was no sign of cancer. Now I know it's pseudo cirrhosis which does unfortunately come with clinical symptoms: Portal hypertension,, oesophageal varices, pain in liver and bloated abdomen are some of the things I'm suffering from.
No cure, no treatment. However, I've had almost 5 years from diagnosis of stage iv - more than I ever thought
hi Andersl. I researched as well and 'pseudo' cirrhosis is a misleading name as there is nothing 'pseudo' about it...clinically it has the same symptoms of cirrhosis. but you already know that since you are experiencing the symptoms first hand....oesophageal varicies, portal hypertension, ascites, and pain. and yes, it's main cause is a side-effect of receiving chemo, especially those with mbc....no clue why. I did not come across a specific chemo? it is quite rare. but that doesn't help you. just plain bad luck. those damn side effects😡.
I just want you to know that I hear you and I understand that this really sucks!!! and i'm really sorry that this is happening to you. and your reaction to the enhurtu is just adding fuel to the flame at the moment. I sincerely hope🙏 that calms down for you going forward. you don't need a double-whammy.
If the side effects of Enhertu stick to Day 7 then I can (hopefully) be better prepared in future.
When I read in the research that it is "rare" I almost laughed out loud... I already have other rare conditions... a brain aneurysm and Reactive hypoglycemia. Ive always joked with my friends that I only get conditions that are rare
After taking everything into consideration I've decided that when I get the cancer back (in whatever area of the body it arises), I will come off treatment.
I said at the beginning of the cancer journey that quality of life and cognitive function were imperative to me.
So coming off the treatment isnt me 'giving up' (as some might say) but taking control of my life and moving on to 'pastures new'.
Thank you again for your thoughtfulness and understanding.
I agree Louise. quality of life is so important. at what point do you say 'enough'....such a personal decision. and no, it is not 'giving up'. like you say, it is a matter of taking control. and acceptance. something I give a lot of thought to these days. you are a brave woman and I admire your strength💪🏻. hoping you have a reprieve from any new cancer developing anytime soon🙏🏻.
I had to chuckle at your joke with your friends, "I only get conditions that a rare". I have quite often felt the same way! - "I'm one of the ones in the 'only 5% group' " hahaha. But on a serious note, I am so sorry to hear about both the cirrhosis development (eek, I have liver mets too, and chemo is expected to be my next line after Afinitor), and also that horrible Day 7 experience. I can relate and it's awful, and yes, quite terrifying. Once my old doc told my hubby, "yes, she'll be fine for you to still go away for the weekend". Well I had a shot of the long term Neulasta, after he left, and ended up in horrendous, crippling sacrum and skull pain. OMG I hope to never feel that again! Hopefully next cycle it won't hit you so hard. You know, as your body gets used to the drug. Sending virtual hugs and healing vibes
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