Tamoxifen and pbc: Hi just wondered if anyone... - PBC Foundation

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Tamoxifen and pbc

Aussielouise profile image
ā€¢16 Replies

Hi just wondered if anyone else out there is taking tamoxifen for breast cancer?

Has it caused you any problems with your liver etc. I have pbc and SOD and sjorgins and breast cancer šŸ˜¬

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Aussielouise profile image
Aussielouise
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16 Replies
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Calogia profile image
Calogia

So sorry aussielouise.....so much to deal with. My heart goes out to you. I have PBC and sjodrens. What do your doctors say about taking tamoxifen an your liver?

Aussielouise profile image
Aussielouiseā€¢ in reply toCalogia

Because it can affect liver I've had to wait a while before starting it. I've got to be monitored closely while taking too.

Ktltel profile image
Ktltel

Aussielouise, maybe I shouldn't post because I don't have an answer for you. But, I just wanted to say I am so sorry you're dealing with so much. I'm feeling sorry for myself lately and it's ridiculous when so many are dealing with many things at once. Keeping you in my prayers. I hope you get an answer soon. (Hugs for you)

Stella

Aussielouise profile image
Aussielouiseā€¢ in reply toKtltel

Thanks for good wishes. It's good to be able to ask questions and get support here.

Angel_b profile image
Angel_b

Same as Ktltel cannot imagine what you are going through. But wish you a speedy recovery. Will keep you in my thoughts and prayers

Aussielouise profile image
Aussielouiseā€¢ in reply toAngel_b

Thank you xx

JaneIng profile image
JaneIng

Hi AussieLouise,

I am so sorry that you are suffering so many health issues. I don't have an answer for you but I certainly feel for you. (My mother is suffering from stage 4 ovarian cancer.) I have been researching cancer treatment on her behalf. I heard that Low Dose Naltrexon and Alphalipoic Acid can help autoimmunity and Cancer. My mother is going thru chemo so she can't take LDN and ALA right now. Otherwise we will try.

Here are two links you might be interested. Do check with your doctor though.

thetruthaboutcancer.com/low...

Another link is on youtube by Doctor Burt Berkson - Low Dose Naltrexone (LDN) prescribing Doctor

Best wishes,

Jane

Aussielouise profile image
Aussielouiseā€¢ in reply toJaneIng

Thank you for your kindness. I hope your mother get all the help she needs. Xxx

Calogia profile image
Calogia

Aussie...I read a few articles since my last post and they seem to think tamoxifen helps the liver. It looks promising.

Aussielouise profile image
Aussielouiseā€¢ in reply toCalogia

Yes. It's a bit confusing because I've seen them too. Only thing is one of the side effects from tamoxifen is liver damage! So very strange. My oncology dr said she is going to monitor closely and if my liver gets worse she will have to rethink. I hate the thought of taking the tamoxifen anyway. It's associated with a long list of side effects. But, like my dr said cancer or side effects!

So I'll just to wait and see I suppose

Jewelian007 profile image
Jewelian007

Hi Aussielouise, I hope you're doing well. Since this post is 2 years old, I'm hoping I can talk with you about how you're doing on Tamoxifen. I was diagnosed with breast cancer and have pbc and sjorgrens also and my oncologist wants me to take Tamoxifen. I have read it causes liver damage also and I don't want my pbc to get worse. Any information you can provide would be helpful.

Aussielouise profile image
Aussielouiseā€¢ in reply toJewelian007

Hi. Funny I should just see your message as Iā€™m sitting in my oncologist waiting just waiting for my 6 month check up. My Rheumathology dr is quite happy for me to take tamoxifen as so is my liver specialist.

In fact there are old studies which looked at tamoxifen as a cure for pbc! Have a google and see. It has been shown to lower raised lfts apparently and I think it actually did mine.

I have sjorgins too by the way. Seems it goes with pbc quite a lot. I hated starting tamoxifen but really itā€™s not been so back apart from the terrible hot flushes lol. I did stop it for a month and really didnā€™t notice that I felt any better so Iā€™m putting feeling rough down to the sjorgins and pbc. Actually I think itā€™s the sjorgins that gives me the most problems now. I have terrible painful feet and legs. Fatigue is bad and I feel like Iā€™m 100 some days. Funny when I first heard about it I thought it was ā€œonlyā€ dry eyes! Itā€™s affecting my throat too and my white blood count. But hey cancer hasnā€™t returned so I canā€™t complain. I did have to give up my job which at first I really missed. Now Iā€™m quite happy about it in some ways as thereā€™s more important things I want to save my energy for.

Itā€™s scary to start this journey but Iā€™m two years post cancer diagnosis and fine. Tamoxifen isnā€™t the scary drug I though it was and my liver is doing well. Donā€™t have any worries about the tamoxifen, if your doctor thinks itā€™s for you take it! Hope this helps. Good luck with everything.

Dkscott profile image
Dkscottā€¢ in reply toAussielouise

Hi- I just saw your post. I had breast cancer two years ago and am now having trouble with my liver. I have anti-mitochondrial antibodies and potentially PBC. I think the tamoxifen is causing it.

Aussielouise profile image
Aussielouiseā€¢ in reply toDkscott

i was told my Rheumathology dr that itā€™s hard to know what comes first, autoimmune disease or cancer. I donā€™t think the tamoxifen causes pbc. You may even have had the pbc for longer than you realised without it becoming apparent. Hope youā€™re doing well.

Aussielouise profile image
Aussielouise

Your sister did the right thing. I used to be in the medical field before I became too unwell to work. Natural treatments never work for cancer. Iā€™ve seen way too many people just get sicker and sicker from just going natural.

Conventional medicine doesnā€™t have all the answers but itā€™s the best we have available.

After two years Iā€™m not having any problems with the tamoxifen.

Aussielouise profile image
Aussielouise

Sorry to hear you have neuropathy from the chemo. I think itā€™s all a balance act. My immune system went crazy after the radiation. I now have a lot of problems too. But I suppose if itā€™s a balance between cancer or radiation Iā€™d do the radiation again. Even though itā€™s enough to give me nightmares.

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