Bottle o Tamoxifen
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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.
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Sorry for all of the repeat posts! I have no idea why this site acts up sometimes. 😬😬😬
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Is anyone here taking Lupron in addition to Tamoxifen?
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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
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bumping
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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?
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tinydancer - are you in menopause? that is certainly a menopausal issue
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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!
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I wish my hot flashes would completely stop! lol
That is odd they would stop suddenly and not taper off.
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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!
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Hi lilpea,
That is also the same with me. The hot flashes were not that often nor were they frequent but, noticeable none-the-less. They last about 2 weeks and left fairly quickly. They didn’t seem to taper off, just stopped. I would like the same to happen for the bone and joint pain. I started Tamoxifen on November 28, 2017
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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.
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Rozem, that's probably the reason. I'll talk to my MO on Monday.
Lilpea, I wish my hot flashes would stop so that I could sleep through the night.
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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.
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Michelle, did you take magnesium at night or AM
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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.
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I take magnesium that is "built into" my calcium supplement. NO joint pain from Tamoxifen that I can really tell. I also take Tumeric, which I believe helps with this. (My integrative MO recommended.)
Magnesium is also good for headaches, as I've mentioned here before.
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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.
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So many of your comments are really helpful. I've been on Tamoxifen since Sep 16. I had radiation which I finished Aug 29 and no chemo.
While I haven't had severe SE, they have been pesky. The tip and discussions about Mg has been helpful. I've been taking it for a few weeks now.
I try to exercise every day, especially if it isn't going to be a physically active day. I find that it helps with the muscle aches.
Is anyone else having issues with swelling of their ankles? I have some swelling every day, but some days it's really bad. My MO says that my body has probably been thrown into menopause with Tamoxifen, and swelling is often a part of that.
Love to hear if anyone else has this issue.
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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.
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If you notice swelling in your ankles, try elevating them from time to time during the day. You might also try compression socks to keep the excess fluid out of your lower legs. How is the magnesium working? Everyone taking it, please report in so we can track the potential of magnesium helping hot flashes and muscle aches/joint aches. Thanks.
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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.
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I will take a trip to Walmart for Epson Salt tomorrow which is a later soon than the appointment to see the rheumatologist lol.
I will post on the helpfulness of a good soak. Also, this thread is older and very long which is the reason I’m sure the topic of foods, spices, supplements, and herbs to avoid while on Tamoxifen has been addressed at some point. However, while you lovely people are here and actively full of great advice does anyone know if Chamomile tea is on the list to be avoided?
Thanks
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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.
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I’ve been having horrible hip pain that I couldn’t even walk. My MO ordered a bone scan and no Mets. However I am riddled with arthritis. It found arthritis in hip, spine, shoulders, neck, elbows, wrist, and hands. Non of this was there one the first bone scan 1 1/2 yrs ago before I started tamoxifen. Anyone actually get arthritis from this med? Is the damage permanent?
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Lula73 - Thank you for the tip about the lemon water. I'll try it.
Michelle_in... - For me the Mg is helping. I think my muscles are little less achy. I know the exercise helps - the days where I skip, I don't feel as good. It's all very subtle though.
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From those of you gals who take melatonin to help with sleep, some advice? I have only tried it a couple times. Took the 3mg strength. I felt wired and had weird dreams when I finally did get to sleep. Am I not taking a strong enough dose? Or does it take a little bit of time to adjust to it?
I'm having some sleep issues already. And start Tamoxifen this week. I'm trying not to get anxious.
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I don’t take melatonin often but when I do I always have dreams with animals attacking. Very weird.
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If melatonin makes you wired, you're taking too high of a dose. I started with 0.3mg (yes, that's point 3!) and it worked perfectly. I could only find it on Amazon but this was the strength recommended by my holistic doctor.
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I started with 1mg, also had to order it. It can do the opposite of what it’s used for which is a little known fact. Strange
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