Bottle 'o Tamoxifen

jojo9999

I stopped periods when i started tamox, for 6 months, then all the side effects went away and my period returned for 2 cycles. Now hot flashes are back and the period is gone... can't figure this out, but based on blood tests, i am still perimeno (52 y.o.)

Anniemomofthree

Hi All - I have been on Tamoxifen for four years and three months (including a four month break). I am scheduled to get off this in 9 more months. Woohoo! i jave had my period about once a year for these past years. Each time I have been rushed in for an ultrasound and biopsy. All negative. I finally was switched to an AI last December, after repeated tests that said I was post menopausal. I immediately had three periods in Jan, Feb, and Mar. I was then switched back to tamoxifen in April. I just got my period yesterday. I hesitate to call my onco, as I know I will be asked to go in - again - for an ultrasound and biopsy. This bleeding has acted like my period...cramps, usual look and feel. I am 48. I am a triple positive and was diagnosed as a IDC stage 1A in Nov of 2015.

Question - is anyone else on this rollercoaster? My onco wants to take me off as he believes the risks for further use of tamoxifen outweighs the benefit. Looking for insights...

Thanks! Annie

shelleym1

plumster, i had horrible indigestion at the beginning. Probably the first month was the worst for my stomach. Pepcid did wonders and now I don't have issues in that area at all.

gemini4

hey Annie -- I'm not quite on the roller coaster you're on, but my irregular periods stopped about six months in to taking tamoxifen, but then I got a period 15 months later. I also had the ultrasound and even a d and c -- all normal. My MO definitely wants me to switch to an AI once it seems I'm definitely in menopause; the plan is to check in January.

Since your MO really wants you on an AI, has ovarian suppression been suggested? I believe that's the only way to effectively be on an AI if there's any chance of not yetbeing fully post-menopausal.

plumster1

Shelleym1- thank you for the feedback. I hope that is the case for me too

Sjacobs146

Annie, they're worried about the bleeding because tamoxifen causes an increased risk for uterine cancer. My doc is telling me that I will be on Tamox or AI for 10 years.

Dakjo

I'm new to this discussion board, as I took my first Tamoxifen pill this morning. Thanks to everyone for posting. The threads have been helpful.

6doggies

Dakjo, I just took my first one last Friday the 18th, so far I haven't noticed anything different and I'm wishing the same for you!

6doggies

This may have been answered somewhere along the line, but I didn't look back that far, how does the MO know how much Tamoxifen to give us, I take 20mg, is that standard or is there a calculation of some sort that determines how much we take per day?

CarolynAnne

Hi Everyone-

New to this board. I am supposed to be starting Tamoxifen now. I've had the pills for several days and can't bring myself to take one! I am terrified of the blood clot risk. I had a clot form in my jugular vein the week after my port was put in back in Feb. I was put on daily Arixtra blood thinner and stayed on that through chemo and after port removal and Mx and DIEP recon. So I have been off since Sept 2 and on 325mg aspirin instead. My MO thinks my clot was just due to the port and I shouldn't worry.

Has anyone else had a clot?

Thanks for listening!

CarolynAnne

6doggies- my rx is for 20mg. I think that is standard.

loriekg

My Rx is 20mg also...interesting question.

BBwithBC45

CarolynAnne, I had a DVT almost 16 years ago, following a foot surgery and was told at the time that I could never take any hormonal pills. And here I am taking Tamoxifen. My MO is having me take baby aspirin with it and I started bruising excessively. At times I do get nervous about a blood clot, but most of the time I don't think about it. I'm more scared of cancer.

NormaJean65

CarolynAnne, I too had the same thing only in reverse. My jugular clot came right before my last infusion of Herceptin. A DVT was done the next morning & revealed a clot completely closing off the vein. I was put on Arixtra also until I returned from my vacation, then Coumadin with testing weekly seeking the correct dosage level. After 4 mons. I requested another DVT which came back clear. Here is where my MO differed, he then did blood work on me (16 vials at the lab, not kidding) to determine if the clot was due to the port stopped working or did/would my body have a tendency to develop clots on it's own. Why not ask your MO for extra blood work including clotting time for your peace of mind and possibly rid yourself of the aspirin instead of assuming. Does your MO do regular checking of your clotting time since 325mg daily (for how long?) could create other issues for you?? Is your port still working properly or did they replace it ?

CarolynAnne

Thanks BBwithBC45 and NormaJean65!

Clots are so scary! I'm sorry you both had them!

My port was taken out July 22 ( 2 days after I finished chemo cause it had caused me so much pain that I wanted it out ASAP!) I stayed on my Arixtra for 6 weeks after that also had my surgery during that time on Aug 17. My PS wanted me to continue on the aspirin post -surgery.

My MO didn't suggest any bloodwork. She plans on seeing me again for my 6 month check up. I called this AM and told the nurse I hadn't taken it yet. I am waiting to hear back from my MO.

Well I went ahead and took my first one about an hour ago......

I kind of wish that I could just take an AI instead so I don't have to worry about the clot issue but we aren't sure if I am in meno or not. I am having hot flashes etc which started during chemo and haven't had a period ( TMI?) since chemo started . I had a Mirena in for 2 years before chemo so altogether I haven't had a period in like 3 years. MO feels we can give the Tamoxi 6months and if I go without a period during that time then we will check hormones and probably switch me to an AI.

Have you heard of testing for FVL mutation? I read about that somewhere.

Thanks again!

SummerAngel

About the dose, 20mg is typically given to every woman, which is the dosage that has been studied extensively. I'm currently taking a half-dose to try to avoid the SEs I developed on the full dose. My MO said that he has a number of patients taking the half-dose because he feels that although it hasn't been studied it's better than nothing.

Frankly, I think smaller amounts should be studied. The same dose is prescribed for a 120 pound woman and a 220 pound woman. That just doesn't make sense to me, but then I'm not sure how this medicine is metabolized in the body and some meds have nothing to do with the physical size of the person taking it.

downdog

SummerAngel, how are you finding the SEs on 10mg and how long have you been taking the half dose? Do you plan on seeing your opthamologist to get checked out in a bit? Hope the 10mg has negligible SEs for you and that you can tolerate it.

SummerAngel

As of tomorrow I will have been taking the half dose for two weeks. So far I haven't noticed any problematic SEs! My eyes feel a tiny bit sore and "tired", but nothing like they were feeling at all. I have a follow-up appointment with my opthamologist (and my gynacologist) in 3 weeks, it will be interesting to see what happens.

Dakjo

Thanks 6Doggies. I started having hot flashes during chemo. Since taking Tamoxifen, I've noticed a few more throughout the day. I hope that's the only thing that changes. I keep a fan nearby (and portable one in my purse), so not too bad.

My dosage is 20 mg too

ladyb1234

CarolynAnne, I too had a clot develop in my jugular about 2 months after my port was placed. I was placed on Coumadin for 3.5 months with testing weekly to ensure I stayed within range and them adjusting the dosage as needed. I had test done for clotting time and it was determined my clot was event triggered meaning the port caused it. I also developed an infection. My Mo said it was safe to go on Tamo just as your MO did but I did have the test to make sure. I would ask the MO for these simple test as it only helps.

Blownaway

Dakjo - tell me more about the portable fan in your purse....what exactly is it?

lala1

Blownaway---Go to Walmart and look in the fan section. That's where they have the small battery powered ones that fit in your purse. You can sometimes find them on the end caps of the aisle. Cost about $2-3 each and come in different colors with soft blades so you don't get hurt. I have about half a dozen scattered around home, work, the car....wherever I think I might need one!!

BBwithBC45

My husband got me a small portable fan few years ago for my 40th birthday as a gag gift for "power surges". Little did he know....

Dakjo

Blownaway,

It is a small square fan that fits into a purse. You can even wear it around your neck. It is made by O2COOL, and you can buy it at Walmart/Target or online (O2-cool.com). There are several types of personal fans. The one I have is called deluxe necklace fan. It comes in handy when needed.

CarolynAnne

ladyb- is that the Factor 5 Leiden test?

My doc hasn't mentioned anything about tests, monitering me for anything while I am on the Tamoxifen. She doesn't seem worried about the clot issue at all. IDK.

Health and healing to all

lala1

So had my annual with my MO yesterday. Said I looked to be in great health and asked if I wanted to swap to an AI now that I've had a hysterectomy. I politely declined. My BS said stick with Tamoxifen as long as I can since I do pretty well on it and AIs are notorious for more severe muscle pain. My MO said he was ok with it since I only decreased my chance for recurrence from 9% to 7-8% and he said that mostly applied to women 60+ years old. He said studies said it only improved my percentages by about half a point. Anyone else heard that? He also said iCool was ok to take because it had NO hormones in it. He said Sloan-Kettering is highly recommending it for HF. I have to say, it's helped me alot.

He also asked that I not take flaxseed any more. Said there are studies out talking about it's estrogen qualities. He spoke specifically of flaxseed oil but thought I should just not eat my ground flaxseed to be safe. Anyone been told to avoid flaxseed?

Loral

http://www.oncologynutrition.org/about-us/

https://www.oncologynutrition.org/erfc/hot-topics/flaxseeds-and-breast-cancer/

Phytoestrogens and breast cancer treatment

Tamoxifen is a medication known as a selective estrogen receptor modulator, or SERM. Tamoxifen often is prescribed as part of the treatment for ER+ breast cancer. Tamoxifen binds with estrogen receptors, without activating growth in breast cancer cells. In this way, tamoxifen prevents a women’s own estrogen from binding with these cells. As a result, breast cancer cell growth is blocked

One study in mice concluded that flaxseed inhibited the growth of human estrogen-dependent breast cancer, and strengthened the tumor-inhibitory effect of tamoxifen. Multiple other studies with mice have shown that dietary flaxseed works with tamoxifen to inhibit breast tumor growth.

Researchers don’t yet know if these results will apply to women with breast cancer, but this approach—adding flaxseeds to the diet—looks promising. And several studies in women have shown that higher intake of lignans, the key phytoestrogen in flaxseeds, is associated with reduced risk of breast cancer.

Further, lignans in the diet are associated with less aggressive tumor characteristics in women who have been diagnosed with breast cancer. In other words, women who have already been eating lignans at the time of diagnosis seem to have tumors that are less aggressive.

If you plan to add flaxseeds into your nutrition plan, please talk to your doctor or dietitian first, to make sure this is a good choice for you.

Bottom line

While research has shown some benefits with regards to ER+ breast cancer cell death and prevention of metastases within mice and cellular models, it is recommended that human intake should be through diet only, not supplementation. Only moderate amounts of ground flaxseeds, up to two to three tablespoons per day at most, should be eaten.

Always consult your health care team prior to making any changes to your diet or the dietary supplements you are using.

lala1

Thanks, Loral. I told him that I saw on the Oncology Nutrition site that they thought flaxseed might help. He said he was comfortable with me eating it in the normal course of eating but not to supplement it. And even if I did, not to do more than a teaspoon or so. Guess I'll quit eating it!!

Loral

I put 2 tablespoons in my cereal every morning, I don't take it as a supplement.

lala1

Loral--My MO considers that way of taking it as "supplementation". He said he didn't want me to intentionally add it to food. Wonder if all MOs think this way about flaxseed.