Bottle 'o Tamoxifen

I'm a bit puzzled by the number of posters who assume that tamoxifen starves the whole body of oestrogen. It is my understanding that your body continues to produce it, the difference is that your cells don't process it in the same way. Breast cells have their oestrogen receptors blocked so they can't access it, but other areas of the body get a higher dose. That's why there's an increased risk of endometrial cancer in postmenopausal women, their uterus is getting too much, which thickens the lining.

I was 55 and well past the menopause when I started taking it. And I already had the usual post menopause issues with vaginal dryness and discomfort. But since then, that problem has gone away, I don't need to use a lubricant any more, and my sex life is better than ever.

I think the real issues with oestrogen starvation happen on aromatase inhibitors, which really do stop it in its tracks, I feel lucky not to have to go there.

Ditto Lala1 and DizzyBee, I think sometimes people take an idea and run with it. Maybe some experience the negative SEs and during the discussions herepeople get confused or assume and then an idea is born.

Dizzy: I didn't know the difference either until my PCP explained it to me at my most recent visit.

I do think many of the se's attributed to Tamoxifen are other pre-existing conditions.

Sorry for all of the repeat posts! I have no idea why this site acts up sometimes. 😬😬😬

eastcoast- I am but I’m going to talk to my MO about possibly stopping the Lupron. As far as I can tell from my research, breast cancer is an “off label” use for it and you’re not supposed to be on it for longer than 6 months. Now, that could be old info, I don’t know because I haven’t talked to her yet. I’m not sure what the added benefit of the Lupron is other than they don’t want me getting pregnant while on Tamoxifen. Again, I was going to address this at my next appt. To be honest, it’s been no big deal getting the monthly shot, and I can’t tell if the side effects are from the Tamoxifen or Lupron or worse with both, cuz I started at the same time

I have been on Tamoxifen for 2 years and Lupron for 1 1/2 years. I have had a few incontinence episodes. Has anyone experienced this?

Hi! I have a question for anyone who is currently taking Tamoxifen. I started taking it on October 26th 2017. For the first 5-6 weeks I had pretty horrible joint pain (on weekends I was taking 4-5 baths a day because I was so achy!), but the pain gradually went away. I also had hot flashes regularly during the day and at night (not terrible night sweats, but enough to wake me up a few times a night to kick the covers off). Last Friday the hot flashes just stopped. Like out of the blue completely stopped. Has anyone else had that happen? I find it so strange that they would stop so abruptly so I thought I would ask the group to see if it's a thing. Thank you!

Lilpea.....yes the same thing has happened to me! I started Tamoxifen in Oct 2017 and I had hot flashes a lot until about the end of December. Now all of a sudden I don't get them anymore, maybe I get a mild one once a week. I have an appt with my Breast Oncologist in 2 weeks, I will ask her about it. I guess Im lucky not having them as frequently as I used to!

Dizzybee and Lala1, thank you so much for your posts. I started Tamoxifen January 2, am 59 and post-menopausal, and am having the same experience! Will talk to my MO about it at my checkup in a couple weeks. I so appreciate you sharing your experiences.

Magnesium helps both hot flashes and joint // muscle aches. Try 250mgs or 125 mgs to start and see if there is a difference. Also, you can soak in epson salts, and your body will absorb magnesium through the skin. Have a fan nearby for hot flashes and turn down your thermostat at night.. Both of those things helped my hot flashing.

SuzyFL - Its been such a weird experience to have them stop so suddenly, but I'm happy for the break! I would love to hear what your oncologist says. I think I'll send a note to mine too.

TinyDancer5 - the sleep disruption from hot flashes is rough, I hope you're able to find something to help relieve them.

Humblepeace - I hope your joint aches and pains subside.

I started tamoxifen December 17th to be exact, within two weeks i had hip and lower back pain, which has since decreased, it still comes and goes. For the past 10 years before breast cancer, I have expeirienced "joint/bone pain from late term after effects of being a Acute promeylocytic Luekemia survivor for 12 years. Yup you guessed it I am one of the lucky individuals who has had the wonderful "C" demon twice, two different times! I didnt have to do Chemo for breast cancer, just lumpectomy and radiation, but did for APL. I was already dealing with some long term after effects of my previous treatments, so I guess I am use to the flashes, and joint/bone pain. I still have good and bad days/weeks. One thing I have noticed in my short time taking Tamoxifen is that my Neuropathy in my legs and feet seems to flare up more often than before, cannot wait till my April followup with my MO to discuss these fun things with him! I am thankful everyday for groups like this, not to mention that all my genetic testing came back good on all aspects, I was extremely concerned while waiting on the results. I now eat extremely well and try to exerscise at least 5 times a week after working full time as a Dental Assistant, some mornings its hard to get up and get going on my little workout routine, but I try my best. I have found if I dont do it in the morning it wont get done at night. Anti-Inflammatory meds are my friend!!! LOL I also take Magnesium at night for side effects.

inccmd,

I suffer with swollen ankles too, I think from Tamoxifen.Never had them before anyway. I would say my calves are puffy too, I notice if I wear ankle socks when I remove them there will be marks around my puffy ankles. Lovely.

for the swollen ankles/calves, lemon water often helps (but not just water with a lemon slice). Fill a tall glass with ice cubes, fill the glass 1/4 of the way with lemon juice. Fill the remainder with cool water. Drink 1 glass a day.

Here’s a recipe for Hot Flash Shots. The turmeric and cinnamon help with inflammation which can help with the joint pain and the turmeric is supposed to help the flashes. It tastes good and taken before bed helps you sleep well too:

Hot Flash Shots

2 cups vanilla almond milk or coconut milk

1 Tblsp virgin coconut oil

1 Tblsp honey

2 tsp ground turmeric

1 tsp ground cinnamon

1/2" fresh ginger root thinly sliced

1/4 tsp black peppercorns

Mix all ingredients together in a small saucepan and bring to a low boil stirring often. Simmer gently 10 minutes stirring occasionally. Allow to cool to a drinkable temperature. Strain the mixture and dispose of the ginger and peppercorns. Measure liquid out into 2oz portions. Refrigerate any unused portions. Reheat each 2oz portion in microwave for 20-25 seconds as they are needed. Drink 2oz each night about 10-20 minutes before bed. Makes 7 servings.

Dizzybee and lala1, I believe that tamoxifen does attach itself to every hormone receptor in our body. HOWEVER, how those receptors react to tamoxifen is different, depending on the receptor.

It starves breast cancer cells. But it protects cardiovascular and bone health. It attaches to hair cells and can thin our hair. It can deprive our skin of estrogen making us prone to early signs of skin aging. But when it comes in contact with our reproductive organs, it acts as almost a super estrogen (this is very simplified). This can cause problems.

Also of note is that it affects pre-menopausal women and post-menopausal women quite differently. So the side effects might be quite different according to where you were in the menopause cycle when you started taking the drug.

Tamoxifen is called a Selective Estrogen Receptor Modulator, but that makes it sound like it only affects or is attracted to certain receptors. I have not been able to find any information that says 'tamoxifen only sticks to these certain receptors', so I think the term SERM is slightly misleading. As far as I can determine, it sticks to ALL our hormone receptors, but has different actions on different receptors. Starves some, throws others into hyperdrive. It seems all receptors get tamoxifen but how it acts on those receptors, that is the selective part - as best I can figure.