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Liver enzymes

K_I_T profile image
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Hi, looking for experiences of raised liver enzymes and now jaundice. Background is, I had radiotherapy 5 sessions to Sacrum and chest wall/breast on right side, at the same time, in May this year. Bloods took a dive after the third session (platelets, Hb, lymphs), others like liver function (bilirubin and alkaline phosphatase started going up and still trending up) ALT and GGT shot up then came down, but still raised. I have liver, bone and minimal lung mets. I have just started back on faslodex 250mg 3 months ago (different brand to previous ones) and have had itching from two days after I started this brand of faslodex. TSH in Feb was 3.8 but after radiotherapy is 1.47.

Has anyone experienced liver issues after radiotherapy? How was it managed?

Anyone who developed jaundice how were you managed, did it improve?

I have had a CT today and an ultrasound has been ordered, but no appointment as yet. Due some more bloods next week, day before seeing a stand in consultant, as mine is away for 3 months.

Anyone willing to share their experiences, would be much appreciated. Thank you.

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K_I_T
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Threadsgirl profile image
Threadsgirl

I don’t have any experience with radiotherapy but I work in a cancer center and have seen people have elevated liver enzymes due to medications. It is good that you had the CT, that should show if anything is new with your liver that could be causing it. Since you had both the radiotherapy and med switch it sounds like around the same time it needs to be sorted out. It seems like is going a little slow, maybe start pushing for a quicker appointment if you can? Not knowing what is going on is always the worst.

K_I_T profile image
K_I_T in reply to Threadsgirl

Thank you for your reply Threadsgirl. I have chased things up again today and have U/S liver tomorrow and I will be discussed at the MDT meeting this Friday. While I suspect Faslodex (new brand for me) may have played a part in this situation, the Breast nurse says the team do not think it is due to the medication, because they have not seen anyone else have this happen to them! They also have never seen anyone with a platelet count of 1 (one), which I had after a covid vaccine! Latest Liver function test: Alk Phos 1300, ALT 110, GGT 767 and Bilirubin 113. Interestingly, my tumour marker has been reducing by relatively large amounts since radiotherapy, not got the most recent one yet. They usually trend up if things are worsening and down if things improving. I am sensitive to many meds, so wondering if some autoimmune response could be playing a role too. In the meantime I continue to itch (which started 2 days after the first "new" faslodex). Piriton and loratidine not helped, so being prescribed cetirizine and dex from tomorrow. Feel in a right mess at the moment, jaundice worsening and wondering if liver coninues to worsen, if this is start of the end. Was diagnosed de novo almost 7 years ago and being an ex-nurse I have worked hard to help myself, but the control is gone now.

bubblystream profile image
bubblystream in reply to K_I_T

I think your tumor markers going down is a good sign. I would not think this is the beginning of the end. I bet your liver is reacting to something else. Like the radiotherapy. I hope you get encouraging answers tomorrow. They always tell me the scans have the last word.

Threadsgirl profile image
Threadsgirl in reply to K_I_T

This is odd, but there has also been a patient in our center with a platelet count of 1, actually several times as he has no production from his bone marrow and gets transfusions about once a week. He calls it his “super platelet” even though I think the value means 1000 platelets. I hope that when all the results are in you can get some treatment. The itching is from the bilirubin coming out on your skin. The liver is a highly regenerative organ, so once it gets sorted out things should hopefully move in a more positive direction. Take care.

K_I_T profile image
K_I_T in reply to Threadsgirl

I am fortunate that my bloods are usually "ok", just liver main issue. (My Bilirubin levels were normal when I started with the itching, two days after a faslodex dose.) Not keen on taking steroids and PPI (prescribed but not started), as worried it will tax the liver more. U/S today showed bile duct is open, so hoping I will not get "the talk" tomorrow that my liver is too far gone for any further treatment. I have worked out I must have at least 400mg of Faslodex in my body at the moment, as product info says half-life is 50 days. I have cancelled next weeks appointment for another dose. I was asked when I will be coming back for the next dose, I told the nurse maybe never, with my liver function!

Discocat profile image
Discocat

Hi KIT,

Sorry about your current liver issues.

I’ve not had any Radiotherapy experience, so far I’ve only been on targeted therapy 4/6 CDK inhibitors.

I had a bad reaction to Kisqali that elevated my liver enzymes to above 10x normal range. I was told I was super sensitive to the medication.

It took about 2 1/2 months to get them back down completely. I was taken off all meds including hormone therapies and Zometa infusions… told to drink loads of water and to avoid all over the counter meds….no paracetamol even.

No caffeine, occasional green tea only and very clean eating. Low fat, lots of greens and brightly coloured veg and fruit.

Wishing you all the best. Try to focus on the positive aspects…your markers are down and that’s great!

Take care,

Zoe xx

K_I_T profile image
K_I_T in reply to Discocat

Thank you Zoe. I am trying to look at the positives, but have been "mismanaged" before, so am trying to get all info and gauge my situation for myself. Been prescribed dex and Esomeprazole, but do not really want to take it. Also prescribed Cetirizine for the itching, as Piriton and Loratidine not really helped. Developed itching 2 days after first dose of this brand of faslodex, but onc "poo-poo's" everything I say. Family say I need to find someone else. Getting phone appt tomorrow from a stand in onc, while the regular one is away for 3 months.

K_I_T profile image
K_I_T

Well, not the news I was wanting, but suspected. Basically the steroids are the only "hope" they can try for reducing swelling of the liver (to "paper over the cracks", says the stand in oncologist). I do not know whether to bother taking them! Side effects are rubbish. Anyone tried taking Milk Thistle to help flush the liver when mets are "severe"?

My liver function deteriorated drastically when I had radiotherapy and started back on faslodex 250mg.

Itisfinished profile image
Itisfinished in reply to K_I_T

I too was recently diagnosed with liver mets. Was in horrific pain from the swelling. They wanted to start me on iv chemo and I am opting out. I am not strong enough for the brutal treatment. I was only on Letrozole and Ibrance for a year and a half. I was stable with bone mets. Nothing else involved. However the liver lesions showed up. It was heartbreaking to say the least but I am trusting God. I am heading to Mexico to the Hope4cancer hospital to get my overall body healthy so I can have an environment to fight. My oncologist isnt happy with me however its my body and I know what I can endure right now and its not iv chemo. I have been doing coffee enemas they are an excellent liver detoxer. Alot of people I follow with cancer make this a must for their protocol. I also take grass fed liver pills and eat as good as I can when I actually feel like eating. I am hopeful! I have read so amazing stories of people coming through this and walking in healing and ai am going to make that my mission! Dont lose hope friend God is on our side and He wants us healed here on earth!

K_I_T profile image
K_I_T in reply to Itisfinished

Thank you Itisfinished. It is a good idea to say when we do not feel that we can tolerate the treatments these doctors prescribe. Doctors cannot always be right and we need to do what is right for ourselves and advocate. I just accepted radiotherapy, tried asking specific questions about side effects, etc but most of those issues were swept aside. I was annoyed that I just accepted things, because every time I do that I come off worse. It is my understanding there is progression near to the irradiated areas, something I was concerned about damage to those areas. I am not quite giving up yet, although with my nurse training, I know I am on extremely thin ice. I told the radiotherapy oncologist that the focus is always on treating the cancer and often at the expense of the patient. He looked a bit hurt. He also asked if I was glad I had had the radiotherapy, I instantly answered NO. It was too much doing two areas at the same time and clearly my body has not coped with the breakdown of so many cancer cells at the same time and the faslodex too. Hope things go well with yourself and forge the best path forward in life for YOU. xx

kearnan profile image
kearnan in reply to Itisfinished

Have you been to this place in Mexico before? Did someone recommend it to you. I was curious and just looked it up. First, not many people can afford the outrageous prices they charge for 3 weeks. Plus, some of the reviews were unsettling. If you tend to side with holistic medicine, I would think the US would be a safer bet.

Itisfinished profile image
Itisfinished in reply to kearnan

First of all I prayed about it and thats my direction at this time in my journey. Treating the whole body. You cant target just cancer and expect good results. It has to be an overall body approach. I totally trust the Drs in Mexico at Hope4cancer. I dont trust the oncologist here in the US. Its a money making racket and its a shame that cancer is making so much money. If they can keep you sick they can make money. Thats why they wont get out of the box and seek out other natural treatments to set the whole body up to fight. Natural treatments bring no money so they dont want to use natural treatments. All of our journeys are different and I God leads us each on a different pathway!

kearnan profile image
kearnan in reply to Itisfinished

Then I wish you the best. I guess I am one of those people who are a bit wary of places like those in Mexico and quite expensive so I assume money-making opportunity for for those centers also. If it is what you want to try, then I can only hope you get the satisfaction and results you are hoping for. I am NOT one of those people who believe they are hiding the cure for cancer bc it is a money-making machine.

I just remember with Steve Job but he had pancreatic cancer but they had caught it early enough (bc usually by the time they find it, it is too late) but he refused the US treatment and flew overseas (he has that kind of money:) He spent about a year in different holistic and new trial methods in Switzerland and another country.

He started to feel worse so he returned back to the US but by then it was too late to be cured. He told his biographer who was interviewing him while he was sick, that his biggest regret that he did not take the action the US doctors told him would work bc it would have given him more time. But who knows.

I sincerely hope it helps you.

👍

kearnan profile image
kearnan in reply to Itisfinished

I am going into my fifth year. It is in my lungs, spine and now as of 6 months ago my liver. I have never taken any supplements or vitamins in my life, even before cancer. I do not juice and I rarely read books on cancer. When diagnosed, I did not think I would make it five years, but here I am. I just feel blessed I got it late in life when I was 57. I traveled extensively when I was younger. I feel for the younger women who get it. Plus, I had two friends pass away suddenly, not from cancer. Here I thought they would be outliving me and yet it was the opposite. I do not like this Everolimus and tamoxifen. It makes me so so nauseous and I rarely want to eat. I had 3 and 1/2 years on verzenio (the lowest dose at 50 mg.) and falsodex injections so I was depressed when that was taken away bc I felt normal on it. I am only on these new meds about a month and a half but so far, not to thrilled with the side effects. I was hoping they would eventually go away but not yet. Enjoy Mexico and it should be good to meet new people also.

Pbsoup profile image
Pbsoup in reply to Itisfinished

I would be very careful about Mexican clinics. There are many bona fide integrative health resources in the US, who work in tandem with standard of care practitioners. The work on your whole body like you say you want, but don't charge exorbitant fees.

Look into the work of Dr. Nasha Winters for example. she is a long term survivor herself. On her website is a list of practitioners she trained in her metabolic approach to cancer--she does not say don't do standard medicine--she used standard medicine herself, no one who is reputable says not to. What she does advocate is looking at your unique terrain inside your body--hormones, nutrients, etc. and treat it holistically with diet, limited supplements, exercise etc. And it won't leave you bankrupt.

There is no silver bullet. But there are ways to keep one's body strong and resilient.

I really, really worry when I hear people are trying these very expensive, very unproven clinics overseas. Especially when there are resources here that can be combined with proven science.

I know it is your choice, and you prayed about it etc. but I--and likely many others here, would urge you to think very carefully about this.

Itisfinished profile image
Itisfinished in reply to Pbsoup

I trust Dr Antonio Jimenez and his team! I know quite a few people who have gone to Hope4cancer and are doing great! Cancer treatment in America is completely outrageous. Like I said previously each our our journeys are different and our bodies are different. So what might work for one person may not work for another. I walk by faith in my Father and I trust Him to lead me as He has every step of the way. I couldnt imagine walking this health challenge without HIM. He has sustained me in so many ways and I am a walking miracle because of HIM!

Discocat profile image
Discocat

Sorry to hear that your unhappy with your suggested meds. I’ve heard of people taking steroids to ease their liver situation, and it’s worked well to speed up the process with minimal side effects….but I also understand your reluctance. Please be careful before taking unprescribed supplements . It’s worth checking with your oncologist first. I know some here are very into alternative meds and there’s always conflicting information around. Concerning milk thistle …I’ve read that it’s NOT recommended in cases of hormone driven cancer patients as it encourages the production of hormones like oestrogen.

Wishing you all the best,

❤️ Zoe

K_I_T profile image
K_I_T in reply to Discocat

Thank you Zoe. The call from stand in onc today was "the call" telling me no further treatment is possible because liver is beyond help. Where I had radiotherapy to upper chest nodes (I did not know they were being targetted) there has been progression in the nodes and the lung. I have asked for copies of the scan reports, but told my little family unit that things are going to happen sooner rather than later now. I regret the radiotherapy now, they do not seem to be open about things that can happen. I used to work in interventional radiology, but not had experience with radiotherapy.

Discocat profile image
Discocat in reply to K_I_T

I'm very sorry to hear your news KIT.If you can I'd definitely recommend that you try and get a second opinion.

I'm an eternal optimist...and therefore really hope that there is another option for you.

Take care, sending ❤ to you.

Zoe

kearnan profile image
kearnan in reply to K_I_T

I would not put too much into what the "stand in onc" told you. I was told about a year ago to get my affairs in order. You may be surprised when you are still here much longer than you expected.

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