Bottle 'o Tamoxifen

I think that we all have to weigh the pros and cons of tamoxifen for our own situations. I'm finding the side effects to be challenging, and there are days when I look at that bottle of pills and have to force myself to open it. I also think that we don't go from surgery/chemo/radiation to feeling normal in just a few months. I'm back at work but definitely still struggling. But I'm taking the tamoxifen because the risk of recurrence without it is too scary for me. I'm not worried about getting vaccines, since neither of the ones I needed/will need this fall (flu and Shingrix) are live. And since I have asthma, I always get the flu vaccine. I've had the flu before, and don't wish to repeat that!

Hoping today is a better one for everyone.

Fellow asthmatic here! Got my flu shot 1 month post chemo for the same reason...the last time that I had the flue, about 15 years ago, I literally thought that I might die...Never again!

I am asthmatic and only had the flu shot once in 2009, never again. Too many chemicals in the body, need to limit them, my choice no shot. Thankfully have not gotten the flu. I really don't like taking pills, and on top of that I don't like taking pills to band aide side effects from pills.

VL22---Are you a candidate for the Breast Cancer Index test? That might give you additional peace of mind. It did for me.

VL22, periods might come back! Wouldn't that be the ultimate kick in the patootie! The ONLY good thing to have come out of this entire shitball experience has been not having my periods. Good riddance to bad rubbish, I say! They were evil and ruled my life. I do not miss them! My onc did mention that they might start up again at any point. Oh bloody no they better not!

I think you slowly get used to higher levels of pain. I am creakier by the day. Rolling over in bed HURTS. This has got to be tamoxifen because in 2016 there was none of this and now I'm like a seized up rusty hinge. That hurts. Not loving it. I understand people who just say no. As much as I"d like to, I wonder how vulnerable and exposed I would feel. I wonder about a lot of stuff, to no avail.

I insisted on keeping my hormonal IUD. Largely because of not wanting to deal with periods. The doctors weren't thrilled about it because it's exogenous hormones but they also said there wasn't any specific data about it, it's low dose, not estrogen, etc.

I picked up my refill this month and the Mfg is Mayne Pharma and not my usual Actavis brand. That has to be why I am having severe pain in my ankles, feet and calves. Also have sharp joint pain in my hips if I lay on the couch with my knees bent. Ouch! I haven't made the connection until now. I too am having issues with having to go "NOW", and not "soon". Sometimes I don't get the message at all and it is too late. I thought it was the coffee and caffeine, but no, it has to be the Tamoxifen. I try to limit the amount of water I drink if I know I am leaving the house, but that sometimes doesn't work either. What the heck? Would magnesium help with the joint pain?

Is everyone aware of the risk to the liver or having labs that are being drawn to monitor their liver while taking Tamoxifen?

Up until today, I never knew there was up to a 30-40% risk of developing Non-Alcoholic Fatty Liver Disease or Liver Disease/Failure due to taking Tamoxifen. Clinically, it seems everyone is supposed to receive liver testing every 4 months.

How many are receiving such lab work?

Curious to know.

Wanted to pass along the info for everyone. Better to be safe than sorry.

...especially of note are younger, pre-menopausal women who also have concurrent depression (see multiple studies)....

(symptoms and studies to be aware of listed below)

-------------- (cross posted)

I'm just going to add this link, it goes to a thread where a member posted her experience with Tamoxifen.

I feel like anyone deciding on this hormone treatment should be aware of possible damage and risk to their liver, as I was never made aware of this by my MO or team.

Please, as her story illustrates, at the very least, before starting Tamoxifen, have a liver enzyme test run. Better safe than sorry and needing a liver transplant because of the damage!

(Reference post is written by CanadaLiz on 12/15/2018)

https://community.breastcancer.org/forum/78/topics/868854?page=1#idx_29

Symptoms to be aware of:

https://www.breastcancer.org/treatment/side_effects/liver_probs

Here are a few studies for info:

A prospective, randomized study on hepatotoxicity of anastrozole compared with tamoxifen in women with breast cancer

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462391/

"In addition, fatty liver disease, also known as non-alcoholic fatty liver disease (NAFLD) or non-alcoholic steatohepatitis (NASH), was observed in more than 30% of patients with breast cancer who received tamoxifen as adjuvant therapy.10,11 The first anastrozole-induced hepatotoxicity case was reported in 2006.12 A retrospective study demonstrated that fatty liver disease detected using ultrasound was more frequently seen with tamoxifen than with anastrozole (30.4% vs 6.25%).13 "

Association between tamoxifen treatment and the development of different stages of nonalcoholic fatty liver disease

https://www.ncbi.nlm.nih.gov/pubmed/26071793

https://www.sciencedirect.com/science/article/pii/S092966461500176X

"Several studies showed that taking tamoxifen may incur a 30–40% risk of developing nonalcoholic fatty liver disease(NAFLD), according to different diagnosis instruments."Conclusion

The current study suggests that tamoxifen treatment is associated with the risk of fatty liver either by increasing the risk of newly developed fatty liver conditions or worsening previous fatty liver conditions, and even retarding fatty liver improvement."

"Our study suggests that tamoxifen is associated with the risk of NAFLD development, either by increasing the developed fatty liver or worsening the previous fatty liver condition and even retarding fatty liver improvement. The severity of fatty liver is associated with higher rates of abnormal LFT. During the follow-up period, regular abdominal ultrasound checkup, not just for detecting liver nodules, but also for identifying fatty liver change, is crucial. Further checking of liver function and other metabolic conditions once the fatty liver condition has progressed is essential."

Drug Record: Tamoxifen

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

"Outcome and ManagementWhile 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."

Tamoxifen induces hepatotoxicity and changes to hepatocyte morphology

https://www.spandidos-publications.com/10.3892/br.2015.536

"Clinically, patients who accept the endocrinotherapy are instructed to reexamine their liver function every 4 months due to its hepatotoxicity. Numerous research and clinical studies have illustrated clearly that TAM causes the inhibition of mitochondrial β-oxidation and subsequently leads to macrovacuolar steatosis (21,22). The early symptoms were characterized by the presence of a single, large lipid vacuole within the cytoplasm of the hepatocytes (23)."

"In conclusion, the present data showed that a relatively low concentration of TAM (6 mg/kg/day) for a short time treatment (2 weeks) would cause hepatotoxicity and change morphology at the microscopic and ultrastructural levels. Although the liver function may compensate or reverse the injuries gradually, the damage that occurred in the short-term TAM therapy has been shown. Thus, there is a necessity to obtain measures for monitoring liver function and protection at the early stage of the TAM endocrinotherapy, prior to apparent and undesirable clinical symptoms occurring. Furthermore, as DNA damage also occurs at this early period without clear clinical symptoms, which in the long-run increases the risk of hepatocarcinoma, exploring alternatives for TAM in long-term clinical endocrinotherapy is required."

Liver Injury Induced by Anticancer Chemotherapy and Radiation Therapy

https://www.hindawi.com/journals/ijh/2013/815105/

Death due to liver failure during endocrine therapy for premenopausal breast cancer

https://www.tandfonline.com/doi/full/10.3109/0284186X.2010.484813

"In the tamoxifen product information, liver-related side effects are listed and it is recommended to perform periodic liver function tests, although in clinical practice blood tests are no longer performed routinely during follow-up for women with early breast cancer."

"Young women, in particular between ages 26 to 35, seem to be—for yet unknown reasons—more frequently affected by acute liver failure, and the use of antidepressants (metabolized primarily via liver enzymes CYP 3A4, 2D6, 2C19), other potentially hepatotoxic drugs (e.g. acetaminophen-type analgesics and NSAIDs), and alcohol are more frequent in younger breast cancer patients than generally presumed and reported. We therefore advise physicians to pay special attention to patients treated with endocrine therapy for breast cancer who have concurrent depression and who potentially or actively consume hepatotoxic drugs and alcohol. Such patients should have their liver function monitored and liver imaging should be performed if indicated."

The Association of Nonalcoholic Steatohepatitis and Tamoxifen in Patients With Breast Cancer

https://onlinelibrary.wiley.com/doi/pdf/10.1002/cncr.24374

A prospective, randomized study on hepatotoxicity of anastrozole compared with tamoxifen in women with breast cancer

https://pdfs.semanticscholar.org/3aa1/d236d38c20f3a9377dea6f9d5ad8235221c6.pdf

G.L.O.W.N. - Tamoxifen

https://www.glowm.com/resources/glowm/cd/pages/drugs/t002.html

"Effects on lab test results

• May increase BUN, calcium, and liver enzyme levels.
• May decrease WBC and platelet counts.

Special considerations

• Tamoxifen acts as an antiestrogen. Best results occur in patients with positive estrogen receptors.
• Adverse reactions are usually minor and well tolerated. They usually can be controlled by dose reduction.
ALERT Serious, life-threatening, or fatal events associated with tamoxifen in the risk reduction setting include endometrial cancer, uterine sarcoma, stroke, and pulmonary embolism.
ALERT Discuss the potential benefits versus the potential risks with women considering treatment to reduce their risk of developing breast cancer. Benefits of therapy outweigh risks in women diagnosed with breast cancer.
• Clotting factor abnormalities may occur with prolonged tamoxifen therapy at usual doses.
• Variations on karyopyknotic index in vaginal smears and various degrees of estrogen effect on Papanicolaou smears have been seen in some postmenopausal patients. May increase serum thyroxine concentrations and may be explained by increases in thyroxine-binding globulin.
• Initial adverse reactions (increased bone pain) may be a sign of good tumor response shortly after starting tamoxifen therapy.
• Monitor WBC count, platelet count, and periodic liver function tests results.
• Monitor serum calcium levels; hypercalcemia may occur early in therapy in patients with bone metastases."

VL22 - Different meds have different effects on different people. Your MO cannot day 100% that joint pain will occur or will be worse than tamoxifen if you go with an AI. I had horrible joint and muscle pain on tamoxifen along with hot flashes and severe brain fog and then blood clots. MO switched me to Femara/letrozole and joint pain & brain fog got better - not totally resolved but better. Switched again at last visit to arimidex to see if we could reduce the hot flashes. Hot flashes only happen a couple times a day now, joint pain is much better (almost non-existant) and brain fog is lowest yet. You don’t know unless you try though.

BlueGirl, Magnesium Glycinate would help with these leg and ankle cramps? Great! Any brand will work? It says it can also help regulate your sleep quality too. I'll stop taking Melatonin for a while and give the Magnesium a try.

I have begun to get some leg cramps as well. My calves feel like they are "dancing" when I lay down and that sometimes turns into a full on charley horse. So I will try the magnesium. I mentioned this to my Onc but she was simply focused on hydration. So I will drink more water but maybe will add some gatorade. The hot flashes have definitely intensified. I have finished almost 5 months of medication and I can definitely feel the impact. I am going to try acupuncture first for the flashes to see if that provides any relief. I truly don't want to add a medication on just to treat a symptom of another medication. That feels like too much to me. Of course, if the hot flashes continue to ramp up I may change my tune. It definitely impacts sleep when you wake up 8 - 10 times a night.

Interestingly enough I find that I struggle to keep weight on with the medication. I feel like it has turned my metabolism clock back to pre teen days when I was skinny as a rail. Of course I have also cleaned up my diet considerably, but find I have to add daily protein shakes just to keep weight on. My theory is that the lack of estrogen is turning me into a 12 year old boy. Anyone else out there have that odd challenge?

For me, heartburn/acid can feel a whole lot like hunger/rumbling stomach.

I've had heartburn through the roof. I started tamoxifen first and then radiation two weeks later. The heartburn started really bad a few days into radiation, but the RO thinks the tamoxifen is the more likely cause and it's certainly plausible.

So far the extra strong Prilosec they prescribed is helping a bit but not a lot, and I'm still taking more antacids than I ever have before in my entire life combined. And also still eating more...

Mellee, there is hope for weight loss while on Tamoxifen. I've been working on losing weight since my BC diagnosis (figured I can't do much about some of the risk factors but I could work on weight, nutrition, and exercise). I was losing weight much faster before starting Tamoxifen but with an increase in exercise and a slight increase in fluid intake I am continuing to lose slowly--have about 15# to goal, have lost 40+ lbs. The couch potato me is no more, but she keeps calling!

I am now taking the magnesium glycinate for leg cramping and it WORKS! Yay. So happy, I take two tablets at night and sleep well through the night. It felt like before my legs had something rumbling through them, not anymore, the mag glycinate worked for me.

Urgh. I've had an unopened bottle of Tamoxifen for almost a month. Because my PCP prescribed statin and blood pressure meds recently, I'm trying to add everything gradually, and I wanted to wait until I was through with rads, which ended 12/13. So I started the statin last week, and I told the MO I'd start the Big T this week. Crap. Cancer didn't scare me, rads were fine after the first day, but these pills are freaking me out. I keep having blood work problems - early December when it was drawn at the MO's lab I was dehydrated; I upped my intake and got retested a week later, and that time my potassium was too high. Who the hell gets high potassium levels? All the foods I should eat for controlling my low-grade diabetes and for general health are now off-limits! I had to have a kidney removed in September, so anything that affects the kidney/bladder stuff really terrifies me. It seems like everything I have to take has possible negative SEs for that. I've never had regular prescriptions until this year, and I'm 68, so all this is frustrating and frightening. I don't want to take even more pills to counteract SEs, and I REALLY don't want to take anything that might affect my lone kidney. My confidence in my PCP's office was shaken when I got a blood pressure med prescribed that both the MO and pharmacist told me not to take, and had to argue with the nurse practitioner about it. I'm supposed to start the replacement for THAT next week. So I'm looking majorly side-eye at any pill right now. Can't I do like rich cowards did in the Civil War and hire a substitute to do this for me? Except I'm not rich. Just a coward.