Bottle o Tamoxifen
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Hi all - I recently started experiencing double vision. It came on quite suddenly. I went to ER (as my oncologist recommended) and had a battery of tests. Right now they are pointing the finger at tamoxifen. I stopped taking it and am hoping to see improvement. It's been two days and so far, my eyesight is the same.
Does anyone have any experience with this happening to them? And how long it takes for vision to return to normal?
No more tamoxifen for me. I am done.
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Dodgersgirl--I've got my annual appointment with my MO in a couple of weeks. I'll ask him to print out the info on turmeric.
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Layla1- thank you!
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I'm interested in this, too. Because I take turmeric and feel it's so great for anti-inflammatory.
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Yikes! Just got my bottle of Tamoxifen in the mail today and supposed to start. Have been taking Turmeric and my Onco said it was ok to continue to take. Guess I will call the Nurse Navigator on Monday and throw that question out there about it stimulating Er.
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My handout from Memorial Sloan Kettering and the pharmacist at Dana Farber said this:
"Tamoxifen is extensively metabolized in the liver by the cytochrome p450 (CYP) system, specifically CYP 3A, 2C9, and 2D6. It also inhibits P-glycoprotein. Any supplement or herbs that inhibit or induce these pathways have the potential to alter Tamoxifen drug levels in your body which may effect the efficacy/adverse effects of therapy.
"Gaia Turmeric Extra Strength contains turmeric, also known as curcumin, which is known to inhibit CYP 3A4 enzymes. Therefore, we do not recommend using this supplement while taking Tamoxifen."
I struggle with this information. I'd love to continue taking this herb, along with a few others, butaccording to two of the USA's top cancer centers, there's a reason to be wary.
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gardengypsy---Do they say why they specifically mention Gaia turmeric extra strength?
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lala: They were evaluating the list of medications and supplements I gave them.
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This info about tumeric and er+ stinks! I have been getting a lot of help with joint pain with tumeric. I have been using just the tumeric spice with black pepper and cinnamon in a cup of warm milk,. I think some call it golden milk tea. I only use a 1/4 teaspoon tumeric. I wonder if that's ok to have with the tamox?
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I also take Gaia turmeric because it helps so much with my hip pain. I also wish i knew for sure if safe or not. I can't live life with having trouble with severe pain every time I get out of a chair.
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Been on Tamoxifen since June 1. So far side effects have been mild. The worst of it vaginal, some yeast infections and discharge. The last week or so I have noticed the bottom of my feet feel bruised, mostly in the morning. Also, I missed my period for the first time in August.
Anyone else experiencing these particular side effects?
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Booklover74: I've been on Tamoxifen since Nov 2015 (with a one month break recently). After I started I quickly got more vaginal discharge (better now) and my periods stopped within 2 months, though my periods were beginning to be irregular anyway (I am 51). I did not have yeast infections or bruised feeling feet. I do have occasional cramps in the calves in bed, a achy lower back and low moods/ anxiety.
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WillowReed, I also use the spice in my coffee & milk - I made a batch of the paste (turmeric, black pepper with coconut oil), Keep a small jar in the fridge, but most in freezer. I think people are talking about this particular brand, Gaia EXTRA STRENGTH. So I hope the spice is ok...
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Superius- my MO said NO Turmeric supplements but that it was ok to eat Turmeric in food. Turmeric acts like an estrogen positive supplement that would feed the ER+ type of breast cancer
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Dodgers~ I believe Turmeric interferes with Tamoxifen. Not sure it acts like estrogen.
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Hi ladies .... have been on Tamoxifan for about 3 1/2 weeks now. My main SE seems to be I can not sleep. Any advice would be greatly appreicated.
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gardengypsy- my MO said Turmeric acts like estrogen feeding the ER+ BC so was told to stop taking it as a supplement. I fought that "call" as the Relief Factor supplement I was taking was helping tremendously with my arthritis inflammation.
MO's office checked their sources again but came back with no Turmeric. Sigh.
Seen similar stories from other cancer hospital web sites. So, personally, I have stopped Turmeric but sure wish I could return to Relief Factor.
We all have to make these kinds of decisions about a lot of foods and supplements for ourselves as little about BC is settled science.
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I'm doing a little research myself on turmeric and so far have found these articles:
Curcumin & Tamoxifen | The Block Center for Integrative Cancer Treatment
Vitamins & Supplements | Ask the Expert | Living Beyond Breast Cancer
Turmeric and black pepper fight cancer
I have my MO appointment in a week so I'll ask him for his research as well.
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Sigh. I feel like I am back here almost every week asking about side effects.
Lightheadedness?
It is only near the end of the day, and comes and goes, so it could be related to my awful tight shoulder muscles, or maybe just being over tired. I have always had problems with low blood pressure, so maybe its related.
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I'm jumping in here because I've been on Tamoxifen for over a year - with no symptoms really. Suddenly in the last month my scalp has been really itchy and my hair is falling out / getting thinner. I have no idea if this is Tamoxifen's fault, but I'm going on a 2 week break to see if the itching stops. Anyone else experience itching and hair loss? My stylist says she sees no issues topically with my scalp, no rash or flakes etc.
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My head is not itchy, but my hair is falling out. The bathroom floor looks like a murder scene, someone killed my hair. It's all over the place!
I have been on Tamox only 2 months, self prescribing 10mg a day, not 20. I have had : leg cramps at night, night sweats that are pretty fierce, some warm flushes in the day, nothing I'd call a full-on inferno hot flash. Had whacked out dreams for a few weeks, that seems to have settled down. Constipation! And no period since starting the Tamox. All this on HALF the suggested dose.
I do not feel overly tired though, or too moody (mind you, that's my own opinion, the people who live with me might say otherwise). I do not have an upset stomach. I do find myself out of energy but not sure if that is from a nuked heart and lung, thanks to radiation, the fact that I'm out of shape or plain old aging? Not sure where to place the blame.
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I have been on Tamoxifen since June and definitely notice that my hair on my head is not growing like it did when I was taking Aromasin. My underarm hair on the cancer side is barely there. I lost all my hair during chemo and when it grew back was not as thick and was curly. Now it is straight and thin.
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Lisey, Did you happen to get a different manufacturer of the Tamoxifen you take? Each manufacturer has their own fillers and maybe you could be allergic to the new one? It is just a thought. I do better on Teva manufacturer of Tamoxifen. I am loosing some hair to breakage and my anxiety and BP have risen that past two months on it. I was previously on it a few years back before I became Post Menaupasal so these side effects are new to me this time. I hope I adjust. Started on Effexor 2 weeks ago and hope that helps.
Good luck
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I also lost hair after being on Tamoxifen for over a year. It was a couple of months after a hip replacement so I attributed it to the stress from surgery. I also had itching and hair fell out. Very thin. Using Rogaine helps me at the suggestion of my dermatologist at Sloan-Kettering. Love, Jean
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Dodgersgirl---I believe it was you asking about turmeric and I said I'd check with my MO when I saw him. Well, that was today and I told him I had a number of people wanting to take it but some doctors were saying not to. Mine is one that is ok with it and I asked specifically why he was. He said there aren't any real studies out but the basic reasoning is that turmeric is considered SLIGHTLY estrogenic. The reason he lets me take it is that Tamoxifen blocks estrogen so even if it is estrogenic Tamoxifen will block it. But he's less likely to let someone on an AI take it because AIs don't allow your body to make estrogen but he feels it may not work when you're actually ingesting something that may be estrogenic. It's one reason he also allows me to to drink/eat small amounts of soy as long as it's in it's natural form. He also wanted me to know that he's tried to do a lot of research on turmeric because it seems to help so many woman with joint pain and he said any study done has been done on mice and we humans just don't translate that well to mice results. So! Bottom line, I can continue with Tamoxifen. He is running the BCI test as we speak which will tell me if I stay on Tamoxifen, swap to an AI or drop all therapy. He said it's 99.9% accurate. He is still not convinced I should swap to an AI. Said it only improves my odds by 2-3%. He said there's much more benefit for node positive. He even said he has found grade to not make much of a difference which is very reassuring for me since I was grade 3. So as of Feb 1st I'll hit my 5 years on Tamoxifen and will make a change then. If it's to an AI I may have to give up turmeric which would really suck!
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laka1- wow!! Thanks for all the info on turmeric. Unfortunately, I will be on an AI.
I also found Curamed (product name) item online that has turmeric and called Estrogen Balance. The product description says, "BCM-95® Curcumin is the clinically studied active compound from turmeric that supports healthy liver function to help effectively eliminate toxins that mimic estrogen and contribute to estrogen dominance. It also offers powerful cellular protection from the risk of oxidative damage."
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Hello bc friends, I am usually on the metastatic threads. I had to stop by here and let you all in on something. I was dx 2yrs ago stage IV right out of the gate. I have bone metastasis. I have taken tamoxifen,turmeric and CBD/THC for the duration of the dx. Every scan has shown improvement and finally,my last scan came back NED no evidence of disease!!! I have never done harsh chemo or radiation. Tamoxifen se's are bad,but not so bad,now that I know that it's kicking cancers ass!!!
Love to all!!! ChelleG
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That's wonderful ChelleG! Thank you for sharing:)
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Thanks, ChelleG, for the update! Hope you continue on a wonderful, healthy path!!!
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One day something is ok, the next it isn't. I take tumeric curcumin with black pepper when I have an long lasting or too warm of a flush and got my mom some from sports research. She's going to show it to her MO as she's cautious of supps. Every MO says something. Mine didn't bat an eye on it and said fine, and she's a certified oncologist which many MOs aren't and participates in research. Nothing is 100% known for this and that it seems except staying healthy with diet and exercise. The rest is who knows.
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