Bottle o Tamoxifen
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Sign me up for the hot then cold then hot then cold merry-go-round (well, actually, kick me off of it!). I can usually manage about four hours of sleep before I wake up hot and stay awake anywhere from 30 minutes to an hour. Then once I wake up again I tend to be so cold I can't get out of bed. At work I turn on my little office heater in the morning and turn it off and on all day. It is so frustrating. The one small positive is that I used to be freezing in every public place and now at least part of the time it won't be cool enough.
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I am wondering if people on Tamoxifen are taking tumeric? I see it mentioned all the time but when I googled it, it says it can interfere with the efficacy of Tamoxifen.
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Hi Allison. I never used turmeric because my SE from tamoxifen are very mild, but did some research when started taking it and found the opposite: that it enhances the effectiveness of tamoxifen. Here's a useful site (at least for me) about foods during tamoxifen treatment:
http://foodforbreastcancer.com/articles/breast-cancer-diet-during-tamoxifen-treatment
And here's the specific page there for turmeric, with some links to papers at the end:
http://foodforbreastcancer.com/foods/turmeric
Maybe some of the ladies using turmeric can tell us their experience?
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The turmeric issue has been discussed on BCO a lot, including in this thread. A search should identify those posts. My understanding is as Yaguarete has said.
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I am one of the ones taking turmeric. At first my MO said no but then he did some research and decided ti was ok. I think more and more they are discovering that it's "estrogenic" properties aren't as harmful as they thought and that it really does actually help Tamoxifen to work better. And the fact that it's so good for arthritis only helps those of us with the Tamoxifen joint/muscle pains.
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I also take turmeric and my MO doesn't have a problem with me doing so. Not sure whether it is helping my aches and pains or not since I've taken it for longer than I've taken the Tamoxifen, but I have no desire to stop taking the turmeric to see if I feel worse without it!
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I take turmeric; it helps the tamoxifen/zoladex-induced aches and pains. I know this because I quit taking it for a month and felt like I was about 80 years old. Back on it for six weeks now, and I feel great!
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This is interesting: "There is abundant cell and animal study evidence that the curcumin found in turmeric can enhance the effectiveness of tamoxifen. However, curcumin supplements can interfere with treatment with tamoxifen because they potentially provide curcumin at pharmacological (rather than chemopreventive doses)."
This is what I found on foodforbreastcancer.com.
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I just put turmeric (with ginger & black pepper) in my coffee. it's spicy & quite yummy.
You make a paste with equal part of turmeric & ginger, add pepper. warm it up with olive oil to make a paste. (saw it on pinterest)0 -
I've just started sprinkling turmeric powder on my food when it suits and if I remember. Though I heard it is most effective when cooked in food, like sauces (and when eaten with black pepper). I'm eating it because of it's anti cancer properties (hopefully) to help stop the breast cancer coming back. Who knows, it might also help my sometimes achy lower back, which may or may not be the Tamoxifen. A 50 year old I know sprinkles turmeric everyday with his vegan food because he believes it is very healthy (and loves talking about it). The turmeric paste in coffee sounds interesting.
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katcar0001
Any reason your docs prefer the name brand? I don't think Nolvadex (name brand, original tamoxifen) is for sale any more in the United States. I'm about to start and think I'll ask for Teva generic or Mylan generic.
Thanks for any insight from anyone on this thread!
jp
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hi lala1
My diagnosis is similar to yours and I'm about to start endocrine therapy and bc post menopausal (52 yo) I have choice of AI like Arimidex or SERM Tamoxifen...although the Tamo is slightly less protective against BC mets and has cardio/uterine risks, it is bone protective. The AIs cause bone loss and my recent dexascan shows some osteopenia and don't want to get into yet more strong drugs like Prolia to offset bone loss if I can help it. My OM suggested 2 years of Tamoxifen to build up my bones (plus daily weight bearing exercise like jumping on a rebounder) for 2 years and then switch to AI for last 3 years. As you know both drugs can have challenging SE as denying our bodies estrogen which is good to prevent ER+ cancer mets but sure wish they would come up with another solution soon! Both these drugs have been around for 3 decades so it's time!
Anyhow, I recall you were discussing moving to AI with your MO...any insight?
Thanks!
jp
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Hello all!
I am 3 years out from Surgery and recon this coming Feb 2017. I did one year on Arimadex and one year on Femera and could not tolerate either one in the least. I left treatment all together and I have now agreed to try Tamoxifen. I have been on the supplement, holistic, whole foods route for the last nine months and I have had a complete recovery from the side effects of the AL's with the exception of the bone issues ( joint pain). I am hoping to reap the benefits of Tamox as a bone builder. I did not have chemo or radiation after my surgery and recon by personal choice as my lymph's were clear and My Oncotype DX score was ZERO for response to Chemo. I am already way over weight so I am hoping it is weight neutral. I will start on the pills January 1st, 2017 and hoping for the best. I also use Turmeric/cu cumin daily and have found great benefit from it.
Any of you ladies or gents out there getting good bone density scores you can share with me? I come from a long line of women with osteoarthritis and osteopenia and some encouragement would be helpful.
All the best to each of you!!!
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jpBCfree -- Both my oncologists wanted me on the Nolvadex brand--one of them is in the U.S. and the other in Mexico. Neither one of them trust the generic formula. Personally, I think that is probably more of an issue with Mexican generics (quality control?). I took Teva when I could not find Nolvadex.
BTW, anyone acquire tinnitus that they think was caused by Tamoxifen? This extremely high-pitched buzz started about a week ago. Since then, I have reduced my dosage to 10mg to see if I get any relief... none so far. Doctor put me on steroids yesterday for left ear eustachian tube obstruction (mucus from my nasal passages). However, the sound seems to be more right-sided. Hate to blame everything on Tamoxifen. I did find a study that found that Tamoxifen combined with loud noise is ototoxic:
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I am very concerned to take Tamoxifen. I had a bilateral mastectomy September 12, 2016, a total hysterectomy April 11, 2002 and I have RSD (reflux sympathy dystrophy) and fibromyalgia that I currently take two pain pills and one muscle relaxant for as well as use Lidoderm patches. I have severe reactions to medications and am allergic to most that I try. I had to go on birth control, at the age of 16, just to regulate my periods because my body was not producing Estrogen. The doctors told me, that my body was already going through menopause. After having my two children, which only happened by using ovulation drugs and going to the doctor every month, I had a complete hysterectomy...ovaries, cervix, uterus, absolutely everything removed. Then I was put on Estrogen for 8 years. So I was shocked when I was told the cancer was Estrogen caused. I also have Ocular Melanoma in my left eye. I had the radiation plaque treatment done for that January 2014. No biopsy could be done to confirm cancer because the tumor was too small. I have agreed to have chemo because my Oncotype DX came back with a score of 24....right in the middle. I am 62, mother of 2 and grandmother of 4. I have received mixed advice from the doctors and I want to know if I will benefit from having chemo, even if I do not take the Tamoxifen. Knowing how I have reacted to drugs in the past, I do not see a positive outcome with Tamoxifen and I am not willing to go through all the severe side effects just to prove it will not work for me. Please, can anyone advise me in what they would do?I had Invasive ductal carcinoma of the left breast: Grade 2: Size 0.8 cm: DCIS present, type high grade solid and comedo patterns: Margins negative: ER 3+ positive, strong: PR negative: HER@/neu: 0, negative expression: Ki-67: High 30%: Two lumph nodes negative for tumor
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To everyone using supplements and/or herbs while on Tamoxifen: It is wise to have a list of everything you take run by a pharmacist who specializes in oncology. I just took my list to Dana Farber and they told me to stop taking the following supplements because they may inhibit/interfere with the metabolism of Tamoxifen:
TURMERIC
Cannabis
Elderberry
Echinacea
Valerian
Goldenseal
Reishi
I have used the above-listed herbs for general wellness and insomnia off and on for decades. Unfortunately, I am considering eliminating these from my diet.
Wine is on the list, also. This is not because it interferes with Tamoxifen, but because alcohol is linked to Breast Cancer.
I would trust Dana Farber over a .com website any day. MD Anderson's site confirms what I've written.
Best wishes to all.
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Illustrating the difficulty: My MO and other docs support my use of turmeric.
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My OC at Vanderbilt has no problem with me using turmeric either, but she has cautioned me not to drink anything more than a very occasional glass of wine or any other alcoholic drink-less due to a possible link to BC, than because Tamoxifen can be a bit hard on the liver-add alcohol and it becomes a rather bad combination.
I don't use any of the other supplements Garden Gypsy listed, but I do use lots of others and my OC doesn't have a problem with any of them-actually recommends I take the vitamin D, calcium and magnesium.
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My MO ok with turmeric. I kind of go with what she said at the beginning regarding Soy - tofu, soybean ok in moderation. But don't take the concentrated form, highly processed Soy (protein powder etc). So that's why I used the spices themselves, not pill form. & we do like curry!
I was just skimming through the Dana Farber website. looks like they are taking a more middle ground. (kinda like what my MO said about soy, I guess). so I will still be drinking my green tea & Echinacea tea, in moderation, or course.
I don't drink wine usually. but I also skipping the Communion Cup in Sunday morning Masses ( I mentioned that in my Chemo group). Because !.... I have FIVE Onco people (3 researchers, 1 in radiology, + a MD) in my choir behind me, so I literally have to watch my back... I'm afraid they would throw a hymnal at me
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I agree with the list provided to you by Dana Farber but I was surprised to see Reishi on there. It is touted as anti-cancer, and I've read that it increases the effectiveness of Tamoxifen, so I take it in a blend of mushrooms called MyCommunity by Host Defense. Did they give you any further information why they think it interferes with Tamoxifen? Thank you.
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I agree. It's difficult to know what to take. My MO also supports my use of turmeric and I trust him implicitly. Guess this is one of those situations where you have to decide for yourself.
katcar---I'm one of those who've developed tinnitus. Started about a year ago. It's a slight very high pitched whistling in my left ear only. All my docs have basically shrugged their shoulders about it. A friend suggested trying Flonase which I started about a week ago. Seems to have reduced it a bit to where I hardly notice it. Not gone but not near as annoying!! I did get my hearing tested because I was worried about Tamoxifen affecting it, and the doctor said I have "incredibly sharp" hearing so that's good!
jpBCfree--I'm going to have the BCI next fall at my annual MO appointment so I'll let you know how it goes then. In the meantime, I'm like you....I don't want the bone issues of an AI. And AIs can cause heart issues and I have a sister who died from a heart attack at 39 years old so I have to watch my heart. My MO is totally comfortable with 5 years on Tamoxifen followed by the BCI test and then we decide what's next based on those results. He says the better results on an AI skewed more towards women with types of BC other than the usual IDC. He also said they skewed more towards younger premenopausal women so he didn't think I was missing much by staying on Tamoxifen. And I really don't want to lose bone density! It's hard enough to age as it is!!
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Hi grandma4...I feel like our stats are somewhat similar. I was diagnosed at 62. I had a bilateral mastectomy but have refused anti hormone treatment. I do have a debilitating autoimmune disease which definitely affected my decision. I am doing several things to lower my estrogen naturally. I would be happy to discuss more privately as this subject is not received well on the public forum. Good luck to all.
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Lala1 - Thanks for telling me about your tinnitus issues. I just started on a Flonase type spray two nights ago, plus Prednisone for 9 days as well as lubricating nasal spray. My ENT said my nasal passages were very dry and red (Tamoxifen???) and that I had a blocked eustachian tube. I do not know if that is causing the tinnitus or Tamoxifen or lack of estrogen or what. Mine also is very high-pitched... mostly on the right side but it started on on both. It is the left ear that is blocked, so I don't get it. I hope that mine calms down as yours did. I also have incredibly sharp hearing--almost too much!
That is interesting what you wrote about the BCI test and it not really being for the regular IDC types. I am going to have to look at more studies now. I am supposed to start on Femara in January if my estrogen levels show I am in menopause. I am confused on that one though... I don't know why my MO is pushing towards it as I have always understood one needs to be firmly menopausal for 2 years. I do know that he is not a big Tamoxifen fan because he says that resistance develops pretty quickly on it, so he does not like using it more than 2 years. However, he also treats a lot of Stage IV patients, so I wonder if that skews his perspective. I pretty much figure that I will be doing 10 years of some type of therapy if not more based on all the tests I have had so far. I might skip the BCI--I think there is a very small subset of people who come out on the low risk end. But I wish I could get away with just 5 years--I agree that this aging stuff bites!
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hello all, I'm a newbie on this board, but I have a question to ask the Tamoxifen old hands. Have you had a problem with Tamoxifen causing post menopausal vaginal bleeding? (Sorry to cut to the chase here, it's a personal question, I know)
I had an episode of bleeding on day three of taking Tamoxifen. I had a hysteroscopy today which showed I have an abnormally thickened endometrium as well as a polyp, which was removed. I have to wait to find out if this is a cancer , possibly atypical hyperplasia, which is high risk to become cancer, or simple hyperplasia, which is nothing, I think. The consultant thinks it's not possible any of it was caused by Tamoxifen.
The trouble is, once you've had this, even if it's benign, it's highly likely to happen again, particularly on Tamoxifen. And I really really don't want to go through this on a regular basis. But in the UK Tamoxifen is the only hormonal drug licenced to treat DCIS.
I think it would be best to have the whole lot out, along with my ovaries, it's bad enough dealing with BC without this as well.
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Regarding the ringing in the ears- tinnitus and sore joints...I experienced both those 4 years ago (pre-BC diagnosis) @ 48 yo and had no idea that they were SE from low estrogen until now when I see them listed on endocrine therapy possible side effects! Anyhow, at the time I was still regularly menstruating so had no clue and neither did my PC or specialist doctors who talked about and tested me for possible auto immune disease (nothing) when really they were just early signs of menopause. Sigh. Anyhow, both faded away as my body adjusted to it's new world order of low estrogen (and helped a lot when I stopped drinking wine/beer and any alcohol) but wish I had never taken the steroids because immediately after taking them I got the worst flu ever, and threw me into intense menopause. Who knows maybe shutting down my immune system via the steroids is what triggered my BC tumor?? My lesson was not to take any steroids unless only option. The ear ringing will come and go and eventually probably go for good like mine.
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My MO does her own research on each of my supplements and she approved my use of turmeric. It helps both my HFs and my continuing nerve pain, as do the ginger, magnesium citrate and magnesium glycinate that I take. I also use lots of green tea.
Scottie
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I was having a lot of side effects since being on Tamoxifen since March, including swelling in my legs, feet, hands, joint pain, leg cramps, headaches, hot flashes and hip pain. I finally took my MO's advice and took a break from it. As of today been off of it for two weeks and most everything has lessened or gone away. I know I need to take this medicine so now I am bumming that I have to go back on it and go back to feeling bad. Has anyone taken a break from Tamoxifen and then went back on it and not had bad side effects you had before?
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myspaulding. . .I have only taken a break for additional surgeries. I developed most of the same symptoms and have had continued and sometimes severe nerve pain. What helped me most, in addition to supplements, was going on an anti-inflammatory diet (gluten free, no artificial sweetners and no artificial preservatives). I've lost weight and many of my symtoms are either resolved or much better. It was also easier for me to do this diet because my ds was gluten free for years do to a wheat allergy. We're each different though and the swelling and joint pain can be debilitating.
Scottie
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jpBCfree - You bring up a very scary point that has been on my mind about immunosuppression and cancer. My mother was on Prednisone for many years for an auto-immune disease, and the doctors believed that a compromised immune system is what led her to getting leiomayosarcoma of the spine (diagnosed at age 32 stage IV, and it paralyzed her and she died at age 34). I am going to get off of them as quickly as possible, esp. considering I am not improving. I hope that when my body gets used to a low estrogen environment (was on HRT prior to diagnosis), that I experience improvement or remission as you did. I have not had even one second of relief since this started, and it's all I can do to not go mad. Part of that is sleep deprivation.
I dropped down to 10mg of Tamoxifen for the last week also to see if that would help, but no. So going back up to the 20mg dosage. Fortunately, other than dryness and vaginal atrophy, I have not suffered too many side effects. If it were not for my doctor's concern about resistance, I'd stay on it for the 5-10 years (barring any other deleterious effects).
mvspaulding I went off Tamoxifen 2 or 3 times for surgery. Each time, the dryness was even more severe and difficult to cope with for about a month and then got better. Still dry, but not chafed like I was before. I cannot really speak to much about joint pain as I had some in my lower back before Tamoxifen, and it is no worse and no better. I hope that you do not experience a return of your symptoms.
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mvspaulding,
I was having a lot of issues on Tamoxifen too. I was taking 20 mg in the morning with breakfast. My doc took me off of it for about a 4 months. All of my issues did not completely go away but when I started back on Tamoxifen, my doc put me on 10 mg, twice a day. My body seems to tolerate that better. Some of the SEs returned but they weren't as bad this time. I have read thatsome ladies take there dose with supper and feel like that helps. I think all of our bodies metabolize this stuff differently so it might help to reduce your dose or try a different time of day. On the plus side, I do not have all the dryness that I had the first go around because I have a slight discharge this time. I have heard that it is a SE for some.
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