Bottle o Tamoxifen
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KathyShawn - I'm glad to hear it's not Non Alcoholic Fatty Liver Disease as Tamoxifen can definitely cause that. A patient on Tamoxifen has a 40% of developing it during treatment and that's why liver markers should need monitored throughout. If that's been ruled out then that's good news. I don't have any experience with liver issues myself but it did drop my WB count dramatically.
As far as i know there are documented liver issues in a few patients, which may or may not be due to genetics and the ability to metabolize the drug itself. Many early studies, back in the 90s, showed a possible pattern of liver cancer at higher doses but I believe with the standard doses that risk was lessened significantly.
I wonder if simply inflammation of the liver can cause it to be enlarged?
Ill look when I am home again to see if I can find those studies for you. Definitely keep us posted on how your appt goes with your liver specialist. Fingers crossed for you that you get some answers.
Im sure hopeful for you that a break from Tamoxifen and you liver will return to normal. Hang in there.
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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."
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I'm curious, those of you who are on tamoxifen--does your MO monitor your serum aminotransferase levels? If so, how frequently?
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the fda approved tamoxifen in 1977 so it's been around much longer than ai
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my pcp does the routine blood work. 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.
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Why was 20mg settled in as 'the dose'?
When I started reading (and reading and reading) a pattern emerged. It was not stated outright. Sometimes it was, sometimes it wasn't. Women felt like shit on tamoxifen. Women quit taking it. If they were to take it for 5 years at year 3 they said, that's it, I'm done, not doing this anymore. Over and over in different studies a sentence or two tucked in like an afterthought said there was a high rate of participant non-participation, non-compliance. Women just said no way, and tossed the tamox.
So, the dose was lowered. Not with the aim of let's find out how much someone needs to take to get a benefit, but what dose can we get women to take so that they can tolerate it enough to stay on it for 5 years? Seems more women stayed on the drug for 5 or 10 years at 20mg than at 40mg. Hooray - we have found our lowest dose. WRONG. You found a way to keep women from sayng 'screw this' and flushing thier tamox down the toilet. NOT THE SAME THING!
Researchers need subjects to take their damn meds. When the subjects refuse then the researchers need to do something to keep their study afloat. LOWER THE DOSE and let;s hope it's vaguely more tolerable. It is my opinion that 20mg was the bone they threw us before we walked away completely. But it's still lacking lots of research.
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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.
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So what are the standard tests needed when taking tamox? Can anyone point me to that info? THX
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2FUN, definitely liver function tests. Also complete blood count because T can lower WBC’s
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how often?
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My MO does them every 6 months.
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my pcp sees me min 2 x year. Depending on results, that's it. If the liver functions are high, I've been able to bring it to normal range with diet. Since it was still a little high, I see her 3 mo later. I take Lovaza too which is just high dose amino acids/fish oil for triglycerides. Works. Cholesterol is important for liver as is blood pressure too. She also checks a1c once a year since it's very low.
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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.
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I do have a great pcp. Takes a lot of time with you at every appt. Very thorough. She went through bc in 2004 so she knows more than the average pcp. My mo knows she's on top of it so I have just graduated to seeing her twice a year now. All my docs will see me at least 1 x year for life: ps, bs, pcp, mo.
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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.
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ALT and AST are part of the comprehensive metabolic. These are the liver function values.
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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.
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Hi ladies, it has been a while since I have been on here. I was wondering if anyone is experiencing hair lose on tamoxifen. I lose about 10 to 20 strands everyday for about 6 months now. I have read where the hair loss should taper off after a year of being on tamoxifen. So if anyone has experienced this is there a shampoo I should use, vitamin I should take? I really don't want to wear a wig just yet. My hair has no style, just long and I pull it back using bobby pins. Claws and clips slip out. I stay away from scrunchies and rubber bands. I am afraid to comb/brush my hair!!
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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.
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major hairloss. A buzz cut is in the future. Hair isn't that important to me anymore at 50 and now 54.
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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.
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Hello to all. I went through menopause at age 42 while breast-feeding my first and only child. I went through it dramatically and completely! So completely that I became a lunatic. My usual GYN said it was post-partum depression. But I was completely whack. No hot flashes, mostly just very depressed and crazy. Fortunately I went to one of his partners (after a failed trial on birth control pills), and he took my FSH level, which was through the roof, as high as a 60-year-old woman. So, he started me on Premarin. And I stayed on Premarin. It was wonderful.
Cutting to the chase, when I discovered my lump and subsequently my diagnosis of estrogen/progesterone-positive breast cancer, I quit taking my HRT, cold turkey, before the doctors even told me to do so. Again, no hot flashes, but the crazies came back with a vengeance. Not only was I depressed, I was clumsy, absent-minded, indecisive, forgetful, and just could not function. By Day 5, I was suicidal. My psychiatrist said, "Just take the estrogen for now and get through your cancer surgery." The symptoms resolved by Day 2 of resuming my HRT. I tried weaning off (taking HRT every other day), but the depression returned.
Now I'm done with surgery. The oncologist strongly recommends tamoxifen. (I can't take AI's due to some osteoporosis in the left femur.) He terrified me with his talk of "microscopic cancer cells that we can't see, they could go anywhere in your body." I can't even wean off HRT, much less take tamoxifen. I can't get any kind of answer about my chances without tamoxifen AND continuing with HRT, because no one in their right mind does that. There simply aren't any studies about that kind of "risky" behavior. Sheesh.
Now I have to choose between "whether it is nobler" to be a certified hormone-deprived banshee or to be a happy little old lady with a shortened life expectancy. (And perhaps reconstructed boobs! LoL, its the only up side to this hot mess!)
I will try to post again once I have made a decision.
Best wishes to everyone here!
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donnaleeNC what a hard place to be in. Definitely something to ponder. Sincerely hope the decision comes easy.
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Well gals, I knew that this day would come. My MO is switching me from tamoxifen to Arimidex. We were waiting for me to be firmly menopausal first---after all of my treatments ending in August 2017, two year later, and the jury is in. I just saw my MO today.
I am a bit worried about the switch because I really had made friends with tamoxifen. The side effects of Arimidex could impact things that I hold dear....like employment (I teach and need to stand and walk around for hours) and exercise (I do Pilates, elliptical, walk, free weights)....So, we will see how it goes. My MO thinks that I will be fine. With an oncotype score of 46, I need to bring recurrence risk down in every way possible. So, I am making the switch.
I will see some of you ladies on the other threads that I visit. Good luck on the tamoxifen journey!
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Hi All, I learned from my oncologist that tamox benefits me personally 4-5%. Now I have to decide if it's worth the side effects. Ugh.
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Well I just picked up my prescription for Tamoxifin after spending the last 20 months trying all 3 of the aromatase inhibitors with terrible side effects. So I will give Tamoxifin a try. Just a few questions for others who have taken this med. Take it morning or night, with or without food, start every day tablet or start slowly at every other day. Any other suggestions ? Do side effects start right away ? Obviously I'm scared to start again, have been off the last AI for 5 weeks. Thanks for any suggestions
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scrafgal, tamoxifen works for me. No real ses. Mo tried AI letrozole and I was pretty disabled from head, brain to toe. I knew the longer you have horrible ses the lesser the chance of it going away when you stop. 5 weeks on it, 2.5 years later my finger joints still get painful. I'm back on tamoxifen. I'm on a long term plan with it unless it fails. My mom was on 1 of them for 1.5 years too and some of her joints still bother her. Got to think qol. 3 to 4% possible reduction of risk isn't worth being miserable. MO had no problem with me going back to tamoxifen. Thankfully it's quite doable. The hairloss I have doesn't bother me much. I'll just buzz it down when it's bad.
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goldfish, I jumped in. Because I take celexa which may have a mild interaction with t, I take celexa in am and t in evening. Ses can start at any time, beg, mid or end. I had cramps, hot flushes in the beginning. After a year or so it lessened and it's been not very often at all and milder if so. Hairloss the same. I get a little dark brown discharge from time to time which is a se for some. I wear pads. I've taken it closer to bedtime. You can see if it's ok on you on empty stomach. It doesn't say not to.
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Artista964
Tamoxifen agrees with me too. So that is why I worry about the switch to Arimidex...I will pick up the new meds tomorrow. Yipes!
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