Bottle o Tamoxifen
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To All Tamoxifen Sisters......
I rarely post & haven't been on any forums for a very long time but I got some emails in an old account about the postings on this forum. I decided to jump in here & post what my onco told me in January, 2018. (He is my replacement for the onco that retired but same group of physicians.)
During my appt. I told him I had decided to go off Tamo last January (2017) after he told me he didn't ask "his ladies" with my diagnosis to take Tamoxifen for more than the standard five years. To that I replied, but I had aggressive (but small) BC. He assured me that he had looked at all my records, pathology reports & yes, even my OncotypeDX (that was never intended for ER+ but was done anyway. That's another story,)
This past January when I saw him he told me about the Symposium held in San Antonio, TX 12/2017 which the consensus was that more recent studies done concluded that taking Tamoxifen may not be helpful for any length of time regardless what the diagnosis a women had. I just about fell off my chair. Seriously, after all the SEs & faithfully putting it in my body nightly for 6 yrs. Good Grief !!!
I had all the symptoms you ladies have been discussing. Energy level is somewhat better, but age has laid claim to that now, vaginal discharge stopped, thin hair...well, maybe a tiny bit better, and so on. I am only here to tell you what was said to me. Before doing anything, please discuss with your onco if they are aware of the Symposium & discussions about Tamoxifen last December, 2017. This is my story of this long & sometimes grueling journey. (short verision!!
) Best of Luck to all,
Norma Jean
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I'm sorry, I meant to add one other thought. Someone was talking about "taking a vacation from Tamoxifen" on this forum. Please double check me, but I was told it takes 3-4 mons for it to completely be gone from your body before you can see any improvements of the SE's. For me, it was correct. Didn't really start noticing any changes until I hit that timeline.
Again, always verify with your onco. My original onco was very "old school" and sometimes "hard nosed". Bless his heart, his first wife died from BC so he was alittle more stiff & agressive, understandably.
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I think the San Antonio symposium discussed Anastrozole not Tamoxifen and I believe it was also because the risk of fracture outweighed any minor advantage to the longer treatment.
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Interesting that NormaJean mentioned that tamoxifen takes 3-4 months to dissipate from the body after discontinuing. I’m due to switch to an AL this coming December. My NP said I would discontinue tamoxifen for 3 months before testing to see if I was postmenopausal. I’ve seen it mentioned somewhere on these boards that others discontinued for 3-4 weeks. Quite a difference.
Any opinions/experiences with switch up timing/menopause testing would be appreciated!
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Egads, I think I read somewhere that some people were simply taking a Tamoxifen "vacation" for a month while others were "quitting big T" and it took several months for the T to totally be out of the system before starting another anti-hormone! But... I can't remember where I was reading it.
Another random bit- I tried the Claritin today for bone/muscle pain in my feet. It was amazing how much relief it gave. I actually walked around several stores today with little pain. Note: Claritin D was NOT recommended.
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AnnN, about taking 10mg a day, which is half a dose, to see if it makes any difference. I take 10mg a day and I have had all the side effects mentioned here. The only difference with me is that I am losing weight. But I'm sure now that I said that it will find me again, it always does!
I take 20mg every Sunday and Wednesday and 10mg rest of the time. Last night the damn hot flashes came in wave after wave and Hub was wrapped in blankets trying to keep warm and I was a sweating mess laying on top of the covers trying to cool off. Good luck sleeping like that! And the creaky joint thing! Moving around in bed HURTS.
So 10mg might not result in the reduction of side effects you expect. I wanted to AVOID side effects and that's why I opted to go the 10mg route. And bad surprise for me, got all the side effects anyway!
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Thanks all.
Hapb, I googled symposium san Antonio tamoxifen and found the info. The reports of studies are difficult to understan for me.
Runor, l read your posts, but still have hope that less may result in less SEs. Also l view it as a way to come off without withdrawal symptoms. I have alternated between 20mg one day and 10mg the next because l feared l would have difficulty getting Watson brand. But it appears it is now sold with same pill markings under activis, so I'm going to discuss with doctor be further reductions.
In my list of SEs yesterday, l did not mention l learned from this forum that dizziness, cataracts, and feeling cold accept for hot flashes are SEs l have. Just wondering, does anyone have excessive dryness on the tips of their fingers at the top of their nails? I have and have always blamed chemo, but now I'm wondering.
Thanks for listening.
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Whaaaaa? I’m so curious about what NormaJean65 has posted, and if she heard correctly!My ONC went to that symposium/conference as well and that is not what she got out of it! She did gather from the conference that, for my stats, ovary removal and an AI had slightly “better numbers” than Tamoxifen alone. She didn’t feel it was enough difference for me to remove the ovaries at this time. She said from the beginning and still says that Tamoxifen is the most important part of the treatments I’ve had.
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All I could find were articles on how 2 years AL after 5 years tamox is plenty good. Beyond 7 years not necessary. I’m not sure my MO would agree.
I’m confidently hopeful that something new and easy to live with becomes available soon.
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Hapb- www.mdedge.com>conferences
Susan London; oncology practice. Publish date Jan 2, 2018 another published Jan 3rd.
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Tamox taken for 10 years is more effective than 5 esp for high risk or those who cant do AIs due to ses. Tamox has been around a long time so they are able to research this v they can't be sure with AIs yet. I went to a good talk from an onc from ucsf who also does research last fall. The video of that talk is on youtube. I'll find it and link it here.
It's called strategies to help prevent cancer recurrence with over 80% about bc. Worth a listen. My hospital has free educational talks on everything medical and a 24 hour channel.
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here it is close to an hour long.
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Blownaway- Have you restarted yet? I have just gone off the T for the first time. Wondering if a two-week break is average recommended time off.
Although I still have neuropathy, my leg pain immediately improved the day I stopped taking it
Great. Now I will be afraid to go back on.
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thanks for the video rosabella
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I’ve only been on Tamoxifen since 3/12/17. The worst SE for me is definitely these hot flashes. At night they wake me up at least three times, which makes for a tired day. I’m thinking of trying acupuncture
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OMG I am soooo upset. 3lbs in one week!!!! I have been more active in April than I have been since November. 3lbs in one week???!!!! I HATE Tamoxifen and BC. Why couldn't I have one good side effect??? This is very depressing.
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Vamp - could be water weight, have you eaten more salty or carby foods lately? In order to gain a pound of fat you have to eat 3500 calories per day over and above your daily requirements. Three pounds in one week would indicate that you were eating 5-6 meals a day over the last week...which I doubt you have. Try cutting your salt and carbs way down, drink lots of water and weigh yourself again on Friday or Saturday ...bet you see the weight back down. Every time I have a restaurant meal (so much salt!) I'm up 2 lbs overnight from the salt, the next morning I'm down again.
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I don't know if anyone saw the segment on Megan Kelly Today about reducing risk of breast cancer and recurrence risk.
https://www.today.com/health/how-lower-your-risk-b...
The doctor on there said 3 cups of green tea a day can reduce your recurrence risk by 40%!! And regular exercise by 30%. She also says she recommends soy in it's whole form daily whether via tofu or soy milk, She says the science shows it does NOT increase your BC risk. She also suggests ground flaxseed which also greatly reduces risk. Anyone else had their doctor follow these beliefs? I do exercise and I actually eat daily flaxseed with my MO's blessing, but he still recommends not to eat soy. And he doesn't think green tea does anything. Thoughts?
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green tea is good but there is no definitive answer to the question of reducing recurrence. Cancer is pretty smart. Whatever you eat do it for your general health.
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Thanks for the video rosabella.
I am on the 10yr plan. I didn't recall my MO mentioning at the beginning how long I'd be on it. Then one of the Onco researchers from my church choir asked about it, "make sure to do it 10yr if you could".
My S/E are mild. The only noticeable one - Hot Flashes at the beginning, but now it's only warm flushes, I think it's hormone-related, as it only happens after my period (about every 2 months). My MO asked me about my mood last month. I think for most part it's fine. When I told her, "in comparison to many others, s/e is minimum". She replied, "what's important is how they affect YOU. You are not supposed to have to deal with any of these kind of things at your age."
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Ladies, While Soy might be healthy for some, for those of us with Thyroid Cancer too, it can make the daily thyroid replacement hormones ineffective. I have to check for soy in everything from vitamin supplements to all grocery items. I'm all for healthy eating, but just like Anti-Estrogen drugs, all foods even healthy ones can effect us differently. For me, raw veggies cause issues, cooked veggies don't.
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lala1 - on soy - the latest science is that tofu or soybeans is ok. It's just the processed soy that's in some protein drinks and protein bars that's iffy.
I have not read anything on green tea.
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I was off Tamoxifen for about 4 months (gave myself a vacation). The bone pain stopped but not the hot flashes so I can conclusively say they were/are menopausal symptoms for me as I had hot flashes before Tamoxifen. I have now restarted Tamoxifen at 1/2 dosage (3 weeks ago) and the bone pain is back and the hot flashes are no better/worse than when off Tamoxifen. I'm losing hair like crazy. I went on vacation and forgot to pack my 17x magnification makeup mirror. Once back home, it took an hour to pluck out all the mustache hairs. Aaaarrrggghhh!
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I thought since we're on about soy, some of you might be interested in this breakdown article from my fav Paleo website, interesting read:
https://www.marksdailyapple.com/soy-scrutiny/
Blownaway do I hear you there about facial hair! When I completed chemo and my hair finally started to grow back, the fine fuzz on my face 'bloomed' overnight, especially at the edges of my jaw. You could have stuffed a pillow with it, I mean I had some serious wolfman happening! I ended up waxing it (ouch!). It never came back as bad but I have to drag the wax strips out every few months or else I start howling at the moon!
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Facial hair? I had not heard that one..This disease is a nightmare.
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Gardengypsy - I think it was just the initial regrowth and menopause, not necessarily from tamoxifen...if anything it thins hair. So yeah, nightmare lol
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Lala1, I pre-ordered Dr. Kristi Funk's book, Breasts the owners manual. Just released yesterday and I read a few chapters last night. So far a pretty good read, I would highly suggest everyone pick up a copy!
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Hapb yes prevention by diet, and other factors. There are basically three parts to the book, prevention, treatment options, and life after BC. I’m not very far along in the book yet but I like it so far
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I get a little ticked off with books that promote the idea that we can prevent breast cancer. With the idea that we can prevent it is the ever so subtle suggestion that people who get breast cancer caused it - by not preventing it. Oh the authors may go to great lengths to say they don't blame anyone for getting their breast cancer, it is an unfortunate event. But then they go on to say that if you stay skinny, have at least 13 babies, drive a GMC and mow the lawn wearing safety boots and blah, blah, blah, you can ensure you will be less likely to get breast cancer. I call bullshit.
When I use those calculator things about my breast cancer risk factor I am less than 8%. But I got cancer anyway. And I got some weird, whacked out rare version of breast cancer. Now someone is going to tell me to eat kale, suck lemons, rub on more SPF, drink more coffee and wine and sleep better? Oh come on! If ANY of this stuff worked there would be no breast cancer! These books don't help a damn person avoid cancer but they do fuel that fear that many women have (rightly so!) and we open our wallets and shell out dollars for a book that suggests 8 Simple Steps to Save Your Life and Breasts. Again, I call bullshit.
We do not know what triggers cells to go postal and start dividing madly. Since we don't really know what triggers it, we sure as hell don't know how to prevent it. But that doesn't stop opportunistic parasites from preying on the desperate fears of millions of women and cashing in on the cancer cruise. I swear, if one more person tells me to do X or eat X or smoke X and 'it will cure your cancer', my head is going to spin around in circles, exorcist style.
There is a big difference between not taking stupid chances (do not swim in nuclear waste ponds) and preventing breast cancer. Eating pesticides is stupid, don't do it. But beyond that I truly think anyone claiming to have the inside information on how to never get breast cancer is a liar and fraud.
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Thanks Egads, I will try another visit with the scale today or tomorrow. Hopefully you are correct and it was just bloating.
Ladies I do believe that eating healthy and exercise is a good thing for us, but I also believe that environment plays a big role in cancer. For me we live close to what we call "Chemical Valley", they say we have a very high cancer rate here and just South of us as well. Think of all the chemicals we inhale daily, especially now with all the farmers spraying fields for crops. All these sprays - for weeds on our yards, for bug, how good are those oil warmers for us to be breathing in, air fresheners etc.
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https://youtu.be/Zozbu-7vW3U
