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I'm concerned. Plain and simple.
Found out the other day, thanks to CanadaLiz, about the risk of liver damage due to taking Tamoxifen. NO ONE, not even my MO, has ever mentioned this.
WTF?!!!!
I see, from a search on BCO, that there are many members with liver disease or discovering via US that they have it. So I felt it important to post this in an area that hopefully people will see.
It is recommended that a baseline liver enzyme panel be done and thereafter every 4 months (at least) while on Tamoxifen.
Here are the studies....
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(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."ConclusionThe 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."0 -
Wow Spoonie77, That’s a lot of negative info on Tamoxifen. I never knew this on liver problems before. I was offered it after letrozole became a problem and I turned it down due to all the other horror stories. We need to look out for ourselves!
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That's a comprehensive post Spoonie, thanks. I talked to my onc recently about stopping tamox after four years because I had a stroke that may have been linked to the drug. She advised me to stay on it now that I have cardiovascular meds which should prevent another stroke. I have to say that I'm way more worried about mets than liver problems.
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Traveltext - You're welcome and I definitely understand your concern of Mets vs Liver. I just think we all deserve to be made aware of the risks and make our best decisions from there. Wishing you the best on your new meds, may another stroke never find you, and mets neither!
Marijen - It does sound scary, but IMO, if testing is done beforehand and during Tamoxifen treatment, these risks seem to be very preventable. The problem seems to be a lack of testing in general, which is disturging. Best to bring up these things with our MOs and hope they listen and if not, be our best advocates and show them the studies and go from there.
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Breast cancer testing guidelines out of date, missing genetic screening, study says
https://www.cnn.com/2018/12/10/health/breast-cance...
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Overview from San Antonio 2018
Published December 17, 2018
By Dr. Susan Love
"Now we understand that most, if not all, breast cancers have sent cells out into the blood stream way before we are able to diagnose the disease. Up to 40 percent of breast cancer patients have detectable disseminated tumor cells already in their bone marrow at the time of diagnosis. The fact that we can find these circulating tumor cells (CTCs) in the blood or disseminated tumor cells (DTCs) in the bone marrow at the time a person is first diagnosed with an early-stage breast cancer shows that what we have termed early detection is not really very early."https://www.drsusanloveresearch.org/blogs/overview...
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Well that’s just dandy! What took them so long to figure that out?
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Trial and error, I’d say. But don’t panic, the overall figure of 30% of us experiencing recurrence still stands.
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I am on 5 mg Tamoxifen a day. That would be nice to get it down to 5 mg a WEEK. I was on AIs 5 years or so and started 10 mg Tamoxifen a few years back. I am an ultra rapid metabolizer so my MO felt comfortable giving me a lower dose. When my uterine lining started thickening I was dosed down to 5. My uterine lining has since gotten thinner. My liver has never been a problem. I get monitored regularly as is standard protocol with mets as well as getting abdominal ultrasounds.
I did have detectable CTCs in my blood at some point even when imaging showed NED. My last test maybe five years ago showed 0 CTCs. Maybe it's time to test again. I have to pay out of pocket so I probably won't do it.
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Just the thought of starting a treatment first, watching the response, and then only if necessary, the surgery. Talk about a game changer. I won't benefit from this new view, but happy that others will. Now if they can just crack that code on the 30% .
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"There are some older drugs such as chloroquine, an antimalarial drug, that studies have shown can kill dormant mammary tumor cells." I found that sentence very interesting. Older drugs used for secondary responses...
The need to rush to surgery I also found interesting...I waited 18 months for my BMX--wasn't sure I would even get one--and the pathology report post surgery showed mild hyperplasia in my "good" boob, just waiting to be woken up, I guess. I don't mind if I have all kinds of Boris Badinoff cells inside me, but I want them to stay in a coma. Fingers crossed we figure that one out soon.
I just got a shingles vaccine--given in two doses-this fall, and found that this newer Shingrix vaccine stimulates CD4 T-cells which are also the cells that apparently fight many cancers. I embraced the flu-like side effects I had for two days from the vaccine for this very reason. I had a mild case of shingles the summer, don't want it again and because I'm over 50, was able to get it for free through my insurance.
Claire in AZ
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Claireiaz, where did you get that information on the CD4T cells? I’ve been putting off the shingles shot. And wouldn’t a case of it make you immune?
On the cells in a coma, I don’t get that. When other cells in our bodies don’t last more than a few years. How do they last for decades
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Traveltext thanks for sharing that link from San Antonio 2018. Kind of depressing news about tumor cells already spreading but like you said, the 30% rate still applies.
I actually brought something similar up to my MO (about PET scans actually upstaging early breast cancer due to detecting distant metastasis that didn't show up in lymph nodes) she threw that out the window and said it's not possible. Le Sigh. And this was back from 2014 study. Ugggh.
I wish more doctors would listen to us when we bring them studies.
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Well isn’t it more like 50%,as 20% start off denova and 30% early stage go on to stage IV? Even 30% is unacceptable IMO.
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Best not to add those two percentages together marijen. When BC is de novo, that's not classed as a recurrence.
As to the 30% figure, that's been the topic of much debate on BCO, and the conclusion is that it is pretty correct. There's so many variations of this disease, and likewise variations with treatment, that applying that figure for the purpose of prognosis to any one of us is not even worth the effort. It's more, or its less, or it is what it is. Given the complexity of cancer, the fact that it's incurable, and realising there are new and better treatments coming on for metastasis, I reckon that it's worth remembering that around 70% of us will die of other causes. That's not too had a figure.
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Spoonie77 thanks for sharing the 2014 study. It truly bothers me that we all don't get advanced imaging during the initial stages of evaluating our disease. It just doesn't make sense to me. The technology is there, it isn't harmful per say, and it might dramatically change the outcome of the lives of some percentage of patients. It is kind of like the newer recommendations that came out on mammography, saying ok to start them at age 50 vs 40 because only a small percentage of cancers would be undetected. Well if you happen to be one of those impacted it is a big deal.
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I guess it depends where you go, I got the works. Pet, CT, Breast MRI, Mammo, US, three biopsies. And I think those imagings are listed at NCCN standard of care. But I’m not sure how small a malignancy they can find and it didn’t include bone scan.
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It bothers me too Rah2464. I'd rather catch something "earlier" rather than later. No matter what it is. That's why I asked for scans to establish a baseline since I am younger and have a very very very complicated medical history and low quality of life due to those conditions. My MO declined all of my requests, except a Bone Scan (which, don't get me wrong, I was very grateful for). However, I'm seeking a 2nd opinion as I believe she's too "cookie cutter" for my case.
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Hi there marijen,
The shingle vaccine is good for about 4-5 years, it seems. Not sure I understand what you meant about "immune". It stimulates your CD4 cells to fight off shingles, so I'm hoping it will active them more strongly to fight off any other unwanted cells, too.
I get your response about cells not dying, though. Why do they live so long?
https://www.immunomix.com/the-current-focus-on-the...
https://www.precisionvaccinations.com/shingrix-vac...
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Thank you claireinaz, wow that’s a lot of stimulation! Did you get the new vaccine? It’s supposed to have more side effects? I’ve been putting it off. But I had shingles about 25 years ago and the doctor told me I’d never get them again...only can’t remember the med he gave me in pill form.
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marijen - there is a shortage of the Shingrix nationally. I'm on the waiting list at both Costco & Kroger and have been for awhile. Apparently they are receiving very few doses at a time. Since it is a two part vaccine, the pharmacist said they put you to the head of the list for the second shot after you have the first so they don't miss the best effective time window. I was also told that this vaccine can not be given in a docs office - must be a hospital or pharmacy. For those on Medicare - it comes under the Part D drug coverage. For me the price is better if I use GoodRx - but still $150 per shot.
I was excited to see that it may have the added benefit of revving my immune system and maybe preventing another BC recurrence. People that I've talked to said the SEs aren't as bad as maybe mild flu symptoms for a day. Two people had no SEs
Adding - I previously had the Zostavax, but this is apparently much better.
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Thanks Minus Two, I will inquire at my pharmacy. I heard of someone that only paid $65 thru Medicare and I thought that was too much. Well it’ll be worth it to kill some dozing cancer cells!
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I know one lady who has a Medicare Advantage plan and said she paid $10.00. Since it comes under the "drug" plan and not part "B" like the flu shots, the price depends on your drug insurance. I have the cheapest possible drug insurance since I don't have any regular prescriptions. Ergo, the cost of the shot with my insurance depends on the $415 deductible. This year I actually spent $32 on drugs for the entire year.
BTW - it also depends on what State you are in. My brother's cost in Phoenix is almost $50 less than my cost in Houston.
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Minus Two, what is the cheapest drug plan? Only $32 on drugs, that's amazing! But I understand, you don't have regular drugs. The less the better, right? I will look up what the shingles vaccine will cost for me.
Well, the website can’t handle the drug pricing quote. I will have to call after Christmas.
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HER2-Positive Breast Cancer
Neratinib Improves PFS in HER2+ Metastatic Breast Cancer
Neratinib led to a statistically significant improvement in centrally confirmed progression-free survival compared with lapatinib and capecitabine in patients with HER2-positive metastatic breast cancer who have failed 2 or more prior lines of HER2-directed therapy.
De-Escalation Possible in Curative Setting for HER2+ Breast Cancer
Ciara O'Sullivan, MB, BCh, discusses the need for treatment de-escalation for patients with HER2-positive breast cancer, as well as the challenges that remain in tailoring treatment.
T-DM1 May Provide Less-Toxic Option in Older HER2+ Breast Cancer Population
Akihiko Shimomura, MD, PhD, discusses the rationale for the phase III HERB TEA trial of elderly patients with HER2-positive breast cancer.
Paradigm Evolving in HER2+ Breast Cancer With CNS Mets
Shannon L. Puhalla, MD, discusses some of the advances being made in systemic treatment for patients with brain metastases from breast cancer.
ACE Inhibitor, Beta Blocker Lower Trastuzumab Cardiotoxicity Risk in HER2+ Breast Cancer
In patients with early-stage HER2-positive breast cancer who are being treated with adjuvant trastuzumab and anthracyclines, cardiotoxicity-free survival is longer when they receive prophylactic simultaneous lisinopril or carvedilol.
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Again - it's by state. My policy started at $12/month the first year we were required to buy one. Now it's up to $25/mo. It's useful for generic antibiotics - $1.00 to $4.00. Of course this doesn't cover the OTC vitamins I take - Centrum Silver, Citracal, Vitamin D, etc. Still I feel fortunate that I don't have any regular prescriptions.
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I am on the waiting list at my PCP's office for Shingrix, so apparently it can be given in a doctor's office. Suppose it might depend on location or the doctor ( mine was complaining that part of their challenge in getting Shringrix is that the pharmacies are getting more doses than the doctors' offices).
I had the earlier shingles vaccine and after developing shingles 5 years later learned that the earlier one lost effectiveness over time and at about 5 years had hardly any prevention ability. I know of people who have had shingles more than once, the health advice is to get Shringrix even after you have had shingles. I really don't want to go through that experience again!
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Yes, Berverntx, it was a very scary experience. Thanks for the added information.
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Proton Beam RT in Breast Cancer Provides Benefit, But More Research Required
Kimberly S. Corbin, MD, sheds light on the use of proton radiation therapy in the breast cancer space and which patients may benefit from this approach.
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https://www.youtube.com/watch?v=muFF8rwrk40