When I first started taking Tamoxifen I had a tingling sensation on my face and scalp. I’d wake up in the morning and I would be numb around my eyes and sometimes my mouth and temple area. It was terrifying. I thought I had brain mets. My MO was like “nope - not an SE”. But also not brain mets. WTF??

I just happened to have a follow up with my RO at this time. Her student doctor or whatever they’re called asked me about tamoxifen- I told him about the numbness etc and he said it’s absolutely the tamoxifen. I stopped taking it for a month and all those sensations went away. Thankfully, those SEs didn’t cone back when I started up again, but now it’s the joint pain

pi-xi glad you don’t have any SE, it’s doable bu as VL 22 says it makes you think ok so if it’s not tamoxifen what is it?? a met??? They really need tothink about our emotional suffering as well

Has anyone noticed a change in side effects with a refill?

I wish oncologists knew how important it is for them to acknowledge the side effects of these treatments.

my MO was straight up honest with me about all the "possible" SE. I really appreciate that. I told her at the beginning that if she was not honest about everything that could go on that this "relationship " wasn't gonna work. Lol

I am not sure who mentioned the sensitivity to light but It SUCKS. My eyes are very sensitive to light.

Thank you Rah2464, Vampeyes, Lala1 and Minuteatatime, for sharing your stories with me about your cysts and other GYN issues. I also appreciate your advice about exams. It has helped me so much. I sure am glad that they only found cysts, but at the same time I feel a little annoyed because my left breast also has cysts too. I guess my body just loves to form cysts to bad that aren't paying any kind of rent to live in my body. LOL

Vampeyes, Hope your US goes well next month glad you are getting checked often.

Rah2464, I am with you about not wanting to add more drugs to the mix. The less drugs messing around with your body the better. I was glad when I learned about Relizen for hot flashes. I hope it works they said it could take a month for it to work, so I hope to see some improvement soon. I hope you can get your US often. So you can have some peace of mind that things are being watched closely. Hope your hot flashes calm down a bit that sounds horrible waking up so often lack of sleep is the worst!

Lala1: Glad you were able to find a doctor that watched you carefully before jumping right into surgery. It is hard to find doctors like that take the time to listen and do all the right tests first. Thank you for your suggestion about getting baseline exams. I sure am will to get all the exams I need to make sure everything is working alright while I take Tamoxifen. Glad you were able to get t he care that you needed. How often did you get the TVUS, bone density, and eye exams when you were on Tamoxifen?

I got a bone density test this past summer and when I asked my PCP how often I should get them while on Tamoxifen she said she did not know, and when I asked my MO she said get them in another 5 years. It is confusing when different doctors tell you different things. My PCP suggested I take anti-depressions for hot flashes and my MO said to take this no hormonal supplement. I will for sure push for an eye exam even though my PCP said I don't need one.

It sure dose such that even if you take out all of your lady parts to prevent cancer from coming back there is always something left that requires an exam here and there.

Minuteatatime, So sorry to hear that you had a lot of bleeding while on Tamoxifen that must have been a bit scary. When things are normal is sure is a cause for concern. Glad you GYN stayed on top of thing regarding your care. How often are you getting checked and are some thing resolved now or is it still a work in progress?

Thank you all for your help.

Hugs,

Sara

sm627--I got the TVUS every 3 months but within about a year I found my lining had thickened too much to wait any longer so about 4 or 5 in total. And then I get bone density every other year which is pretty standard on what insurance pays for. Eye exams are done once a year and every other year they do some special test that really looks into the back of my eyes. I believe that Tamoxifen can cause calcium deposits and that that's what they were looking for but I could be thinking of something else. With all these tests I lose track of what does what!!

Hi everyone...docs that deny anti hormone side effects are really doing us a disservice. Maybe if they could acknowledge them we could work together to find a solution and more people could actually stay on them for the recommended time! As it stands now only 40-50 percent complete the full course due to side effects. IMO that is not an effective treatment. We need more research into better treatment options.

runor, totally agree, all the medicines and treatments that we receive is a maybe for doctors as well, whenever u ask a doctor how effective this medicine is, the answer is “we really don’t know”.... we need better treatments and medicine for this annoying disease

Found a interesting study on low dose Tamox & topical Tamox --

Oral low dose and topical tamoxifen for breast cancer prevention: modern approaches for an old drug

Wonder when the third arm of the study comes out or if it was even undertaken? I sure wish it's in the works.

The info they present on the low dose Tamox effectiveness and also that of the topical seems very promising and I would much rather do that route than the current my MO is asking of me.

-----

Conclusions

Tamoxifen for use in the breast cancer prevention setting is supported by strong evidence, including phase III clinical trials. Based on clinical trial data, tamoxifen was approved for risk reduction by the US Food and Drug Administration (FDA) in 1998, and it has been endorsed for this purpose in specific categories of women by the American Society of Clinical Oncology Clinical Practice Guidelines committee [2,71,72]. In spite of these supporting factors, tamoxifen continues to have low acceptability in the community of high-risk women and their physicians, who are primarily non-oncologists [4,73-75]. This limited uptake of tamoxifen for prevention has been attributed primarily to concerns about drug toxicities and a perceived unfavorable balance between risks and benefits. These concerns about drug toxicity are exacerbated by the lack of experience with oncology drugs among the internists, gynecologists and family practitioners who generally see and counsel high-risk women. These primary care physicians are often reluctant to prescribe tamoxifen, which they perceive as a 'cancer drug' that has challenging side effects.

In order to reduce the risk of these adverse events, effective and safer drugs are being developed that could potentially replace tamoxifen as preventive agents in high-risk women. Novel endocrine agents, including both newer selective ER modulators (raloxifene) [76] and, more recently, third generation aromatase inhibitors (exemestane and anastrozole) [38,77], have been or are being evaluated in phase III clinical trials as breast cancer risk-reducing agents. All of these drugs, however, are limited to postmenopausal women, leaving tamoxifen as the only chemopreventive drug for premenopausal women who are at increased risk of breast cancer.

Both low dose tamoxifen and topical transdermal application of tamoxifen metabolites offer two promising strategies for reducing side effects relative to standard dose oral tamoxifen in the breast cancer prevention setting. Several phase II trials have demonstrated that low-dose tamoxifen retains biological activity while potentially having lower toxicity. These clinical trial findings, together with data from observational studies, suggest clinical value of low-dose tamoxifen for prevention [26,35,41,44,49]. The ongoing phase III trials will help to define more clearly the risk:benefit ratio of low-dose tamoxifen.

Topical applications are of great interest but drug formulation and dosage require close examination. Following transdermal application of 4-OHT in the studies conducted so far, very low plasma concentrations of the drug have been observed. These low plasma levels in the setting of a topical approach that bypasses first-pass metabolism in the liver suggest that there should be a reduction in systemic toxicity [58,59,65,78,79]. Together, these features strongly support the development of localized interventions for breast cancer prevention.

VL22, I understand! I've said this before but I took a break from tamoxifen last winter. Around week three it stopped being fun and I started to worry. I gave myself another week off anyway, so I could enjoy feeling like my old self! If it is any consolation I've had an easier time since being back on tamoxifen It has been more manageable. (I just postponed a TVUS. I don't want to know what is happening in my uterus right now.) Good luck with your decision!

I take Advil and it works great for me. It is fine to take

Nas- that’s very common to experience on tamoxifen. Curcumin supplements and/or CBD oil may help.

Lom-Lin ---> According to my MO, Benadryl/Antihistamines/Diphenhydramine is a P450 2D6 (CYP2D6) inhibitor. This is the enzyme pathway critical to Tamoxifen turning into it's active form and thus doing it's job in hopefully preventing a recurrence.

Perhaps, it's "ok" to take them (benadryl/PM OTC meds) 4-6 hours away from the Tamoxifen, so it has time to metabolize, IDK.

If/when I start Tamox, I'm not taking any chances and will avoid them as that is what my MO has told me to do.

--------

"When you take tamoxifen, your body breaks it down, converting it into the "active metabolites" that actually do what we want tamoxifen to do. An enzyme found in the liver, called P450 2D6, is responsible for making the main active metabolite. Some drugs block the activity of this enzyme. This, in turn, decreases the amount of active metabolite available to do the job.

Diphenhydramine (Benadryl) is one over the counter medication that interferes with P450 2D6. People taking tamoxifen should read the labels on any over the counter medications, looking for diphenhydramine, as this is often an ingredient in sleep aids or cold and allergy medications. Other medications that may interfere with tamoxifen include some antifungal drugs (terbinafine, or Lamasil) and cimetidine (Tagamet)."

https://www.oncolink.org/frequently-asked-questions/cancer-treatments/chemotherapy/medications-that-interact-with-tamoxifen

----------

Pharmacogenomics of Tamoxifen in a Nutshell

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2794560/

--------

The Underrated Risks of Tamoxifen Drug Interactions

https://link.springer.com/article/10.1007/s13318-018-0475-9

"Note that Table 1 includes what are often considered both "strong" and "moderate" inhibitors of CYP2D6. Weak CYP2D6 inhibitors are not included. While it is true that some inhibitors of drug-metabolizing enzymes tend to be stronger than others, the extensive variability in magnitude of effect means that in one particular patient, a "moderate" inhibitor of a particular CYP enzyme may produce a greater interaction than a "strong" inhibitor in another patient....Making decisions about the clinical importance of a drug interaction based solely on the mean values from published studies is problematic. It is safest to assume, therefore, that any one of the drugs in Table 1 is capable of reducing tamoxifen efficacy in any given patient."

Runor, I do agree with you. Just looked at that list as I didn't realize all those meds had an effect on Tomaxifen. The MO never told me what not to take with it. When I was so sick from Vertigo that not only could I not get out of bed, but couldn't sit up in bed, or turn my head ( after being on Tomaxifen for 30 days), I took Phenergen. Even if I knew about the possible interactions I still would have taken it. It doesn't make sense to be so ill and not take medication that will help get rid of the vertigo. I don't take this regularly but definitely will be asking for it after my surgery, although I'll still off the Tamoxifen now.