Tamoxifen and pbc

[Aussielouise]

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 😬

[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 in reply to Calogia]

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]

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 in reply to Ktltel]

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

[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 in reply to Angel_b]

Thank you xx

[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 in reply to JaneIng]

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

[Calogia]

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

[Aussielouise in reply to Calogia]

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]

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 in reply to Jewelian007]

Hi. Funny I should just see your message as I’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 it’s not been so back apart from the terrible hot flushes lol. I did stop it for a month and really didn’t notice that I felt any better so I’m putting feeling rough down to the sjorgins and pbc. Actually I think it’s the sjorgins that gives me the most problems now. I have terrible painful feet and legs. Fatigue is bad and I feel like I’m 100 some days. Funny when I first heard about it I thought it was “only” dry eyes! It’s affecting my throat too and my white blood count. But hey cancer hasn’t returned so I can’t complain. I did have to give up my job which at first I really missed. Now I’m quite happy about it in some ways as there’s more important things I want to save my energy for.

It’s scary to start this journey but I’m two years post cancer diagnosis and fine. Tamoxifen isn’t the scary drug I though it was and my liver is doing well. Don’t have any worries about the tamoxifen, if your doctor thinks it’s for you take it! Hope this helps. Good luck with everything.

[Dkscott in reply to Aussielouise]

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 in reply to Dkscott]

i was told my Rheumathology dr that it’s hard to know what comes first, autoimmune disease or cancer. I don’t think the tamoxifen causes pbc. You may even have had the pbc for longer than you realised without it becoming apparent. Hope you’re doing well.

[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. I’ve seen way too many people just get sicker and sicker from just going natural.

Conventional medicine doesn’t have all the answers but it’s the best we have available.

After two years I’m not having any problems with the tamoxifen.

[Aussielouise]

Sorry to hear you have neuropathy from the chemo. I think it’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 it’s a balance between cancer or radiation I’d do the radiation again. Even though it’s enough to give me nightmares.