Bottle 'o Tamoxifen

RunningGram - I totally get it, it's all overwhelming. Take things in "bites and pieces" and then do something fun. This was my personal journey about Tamoxifen, given I am disabled and have multiple immune issues in addition to now Breast Cancer.

Any Early 40's Declining Tamoxifen?

I had to choose quality of life over Tamoxifen. I ended up nearly bed bound after 2 months on 5 mg daily and I just turned 42. I couldn't live that way. So now, my MO is trying me on ovarian suppresion (Zoladex) and then in Sept I will start Arimidex.

I wish you the best. Everyone is very different in how they respond or when they respond to meds. Some will do wonderful and have little to zero SEs, others (like myself) will get the whole slew thrown at them from Day One. Just because my journey turned out this way on Tamoxifen does not mean it is that way for some or all of the other that take it, I'm in the very very very small minority that do extremely poorly with Tamoxifen. The odds are in most peoples favor that they will tolerate it. I've also read that some women change brands at their pharmacys and that has a beneficial effect too. Some don't experience SEs for months and then they adjust and have minimal. There's really no way to tell, you just have to give a try, if you are able, and take it day by day.

Rosabella, i always thought ones weight might matter cause bodyfat produces estrogen too. This is why i thought they could test your estrogen levels to determine how much you need.

GAILMARY

Hi. has anyone had liver issues on tamoxifen? I've been taking it for 3.5 year (prior to that I was on AI which left me with horrible joint pain - could not function). My last scan showed my liver to be 20cm (twice the normal size) I had an ultrasound which showed no cysts, suspicious spots etc... It is not fatty liver or non alcoholic fatty liver. I see a liver specialist next week and am quite worried. My hope is that it IS from the Tamoxifin and taking me off of it will repair the damage to my liver. I am scheduled to stop hormone therapy in March 2020 - that would be my five year mark. Any advice/experience would be appreciated. I am 55 and want to feel great again!

Kathy - I just happened to Google this on my phone for you. Info on Tamoxifen and toxicity and/or injury to the liver. Lots of relevant info here. I hope some is helpful.

https://livertox.nih.gov/Tamoxifen.htm

"Hepatotoxicity

Tamoxifen has been associated with rare instances of idiosyncratic, clinically apparent liver injury, typically arising within the first six months of treatment and having variable presentations with cholestatic, mixed or hepatocellular pattern of enzyme elevations. Immunoallergic features (fever, rash, eosinophilia) are uncommon, as are autoantibodies. Some instances have been severe with signs of hepatic failure, but most cases are self-limited.

Long term tamoxifen therapy has also been linked to isolated cases of peliosis hepatis, hepatic cysts and several cases of hepatocellular carcinoma in women with no other risk factors for this tumor. However, in large retrospective analyses, no increase in hepatocellular carcinoma in women taking tamoxifen for 5 years has been demonstrated, although these same studies did show an increase in rates of endometrial carcinoma.

Tamoxifen therapy has also been linked to the development of fatty liver and steatohepatitis. In some prospective studies, up to one third of women have developed fatty liver during long term tamoxifen therapy, as shown by routine imaging using computerized tomography. Fatty liver usually becomes demonstrable within 1 to 2 years of starting tamoxifen but is usually not accompanied by symptoms, although serum aminotransferase levels may be elevated modestly in up to half of patients.

Liver biopsy may demonstrate steatohepatitis and a proportion of women develop hepatic fibrosis. Several instances of cirrhosis have been described after therapy with tamoxifen for 3 to 5 years. Serum aminotransferase elevations and fatty liver generally improve once tamoxifen is stopped, but the improvement may be slow and in rare instances, signs and symptoms of portal hypertension persist.

While the frequency of hepatic steatosis during tamoxifen therapy is higher in women with higher body weight and body mass index (BMI), the appearance of fatty liver is usually not accompanied by change in body weight and does not relate to alcohol use or receipt of adjuvant chemotherapy. Because steatohepatitis is usually (although not always) accompanied by minor serum aminotransferase elevations, monitoring of serum enzymes during long term tamoxifen therapy is often recommended.

Finally, tamoxifen use has been associated with development of symptomatic porphyria cutanea tarda (PCT), presenting after 1 to 4 years of use with skin fragility, hypertrichosis and reddish urine and accompanied by elevations in urinary porphyrins and mild serum aminotransferase elevations. Tamoxifen related cases usually arise without other risk factors for PCT such as iron overload, alcohol abuse or hepatitis C virus infection. Stopping tamoxifen is followed by gradual improvement in symptoms, decrease in porphyrin excretion and improvement in liver enzymes.

Mechanism of Injury

The acute form of liver injury attributed to tamoxifen use is probably due to an idiosyncratic reaction to a metabolite of the medication rather than its estrogenic effects. In contrast, the induction of fatty liver and triggering of porphyria cutanea tarda are likely due to estrogenic effects on the liver in the setting of a genetic predisposition to fatty liver disease or porphyria cutanea tarda.

Outcome and Management

While fatty liver arises in at least one third of women treated with tamoxifen for up to 5 years, clinically significant steatohepatitis is less common. Nevertheless, monitoring of serum aminotransferase levels during tamoxifen therapy is appropriate. In women with persistent elevations in ALT levels, the relative benefits and risks of continuing tamoxifen therapy must be weighed. Factors to help in the decision, include noninvasive tests for hepatic fibrosis (platelet count), imaging of the liver and, in some instances, liver biopsy.

Other approaches short of stopping tamoxifen therapy include nutritional advice and weight loss, abstinence from alcohol, and possibly medical therapies for nonalcoholic steatohepatitis (which are currently investigational and have not been shown to be specifically helpful in tamoxifen induced fatty liver). The possible development of serious hepatic fibrosis and portal hypertension can be assessed noninvasively by serial determinations of platelet count, but may require liver biopsy to document."

the fda approved tamoxifen in 1977 so it's been around much longer than ai

Rosabella, just a clarifying question. Your primary care physician checks your your serum aminotransferase levels, not your medical oncologist? How frequently does your PCP check?

Rosabella - I think that statement " I have nafl due to my weight most likely. It's reversible if you change your diet which when I do, it's cured. The liver is a very forgiving organ. It repairs itself too and can take a lot of abuse." can be misleading. Yes, for sure, the liver is very forgiving. It actually can replace over 50-60% of itself in the span of a month or two. However, to say that when one looses weight NAFLD goes away is incorrect. Yes, one way to address NAFLD symptoms is indeed weight loss and for some that can help the liver return to normal function, however that is not the case for all livers.

According to MAYO Clinic & The National Institute ForCanadaLiz who is currently waiting for her own liver transplant due to Tamoxifen complications that caused Non-Alcoholic Fatty Liver Disease which subsequently caused her liver to fail.

So, not all livers are the same. Be sure to have your drs monitor your liver. It's an amazing organ, but we only get one per life.

2FUN, definitely liver function tests. Also complete blood count because T can lower WBC’s

My MO does them every 6 months.

Rosabella - > sounds like you and your doc have a great team approach going and that it is giving you good results for your efforts. That's awesome.

Checking liver function is a whole new world for me--I've been fortunate and outside of two cancers, oh and the osteopenia, I really have no health issues. So these are things I wouldn't know to ask about. Appreciate all the knowledge sharing.

To anyone who’s getting edema, swelling, heaviness — please get thyself to a lymphedema certified physical therapist ASAP. Mine showed up about a year after my 2nd surgery (the one where the cancer cells had taken over a lymph node in my L axilla area). PT made a huge difference. My MO and later the NP in my Radiologist’s office had both mentioned edema in the breast (but not lymphedema!, so it didn’t register with me). The NP sent me off to PT ASAP, thank goodness. I now have garments (mostly custom — thank goodness for really good insurance), a pump, 6 sleeves and matching gauntlets, and a night garment that looks like a giant fuchsia potholder (take that, LE!). The Ameona bras that I used post surgery are perfect for daytime use. We just put additional padding in the prosthesis pocket and it's great. I get them mail order from Nordstrom’s, and they are cheaper than the lacy underwire bras I used to wear (Sigh.

LomLin, oh, yes hair loss is common with Tamoxifen! My hair is still thinning after more than a year on it. I' m using a biotin and collagen shampoo that may be helping a bit--have not used it long enough to be certain if there is really a difference or just wishful thinking on my part.

Yup. It's coming out in handfuls. Had to put hair catchers in the drains to save the plumbing from getting clogged. Falling out my head, growing on my chin. Nice.

donnaleeNC what a hard place to be in. Definitely something to ponder. Sincerely hope the decision comes easy.