Bottle o Tamoxifen
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i have been taking turmeric since 2 weeks PFC, and did not know it could interfere with tamoxifen - yikes! I am taking the spice, dissolving in olive oil with black pepper and mix it in with my juicing each morning. Yum! Who can tell me what the adverse affects are using with tamox then? Now i am worried
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Kimmer33 and KateB79 - I cleared the Turmeric spice with the dietician at our cancer center. As we've all spoken about before on this forum, there is a difference of opinion on what to take. My center said no supplement and only the actual spice mixed with black pepper and a fat (olive oil, coconut oil, etc) - However, others here take the supplement, get relief, and are fine. I always ask the ones I trust before taking. I've been taking turmeric mixed with pepper and sometimes ginger and honestly, dont feel any difference but going to continue - figure it cant hurt i mix in with egg whites as a scramble too. I also drink the Yogi Joint tea made with turmeric each morning. I started taking magnesium as we've all discussed too - Started with Citrate but made me very ill so back to oxide. Have ordered the Glycinate which is supposed to be excellent to help me sleep but has not arrived yet (hard to find locally) - Oh..I was also told that the Turmeric should be heated...not sure if that is true but that's what I do - If you mix in juice, must be cold? Again, 10 asks can get 10 differing answers I try to take all I read and hear, sift through it, and make the best decision I can. Personally, I feel that the tamoxifen is essential so I take a big breath, swallow it, and pray each night that it does its job.
PS - As much as our center does not believe in supplements, they did okay and suggest calcium and Vitamin D so I take those each morning - again, not within 2 hours of Tamoxfen so I take them in the morning and the Tamoxifen at night. Hope this helps.
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Yep, MomofTwins is right. Ask 10 different MOs and get 10 different answers. You have to just pick who you will trust. My MO looked up some articles on turmeric before he ok'ed it:
CURCUMIN induces cell death and restores tamoxifen sensitivity in the antiestr
CURCUMIN Modulates Tamoxifen Response in Resistant Breast Cancer Cells.
These were just a couple that I found. My MO told me from day 1 that he wanted me on a daily aspirin, a multivitamin and fish oil. That was all he recommended. Then when I had joint pain, he said Osteo BiFlex which did nothing for me. He also said NO soy, Vitamin E and grapefruit. He's not into supplements and stuff, or at least he wasn't till I started researching everything and questioning him. Now he's gotten more interested, especially in how much the turmeric and ginger have helped me. I think this whole process of BC just "evolves". You learn to get more involved in your treatment and doctors become less scary so you question them more. My dad is a doctor and he's always telling me that "doctors are a dime a dozen. If you don't like the one you have, there's another one on every corner. It's a long term relationship that involves alot of trust so find one that speaks to you." That advice has worked well for me.
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The whole question of supplements effects on Tamoxifin is very confusing as you say each doctor has a different answer. Because of comments on here about calcium and Tamox, I asked my MO who was just appointed research director of a newly established cancer research center. she said she recommends getting vitamins and minerals naturally from your diet. When I explained that I have mild Osteopenia, she said there is no evidence that calcium interferes with Tamox and that it is OK to take at the same time. The only over the counter drug she said to avoid is Benadryl which somehow interferes with the absorption of Tamox.
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Hello, I was diagnosed with Stage 1 BC Grade 1 IDC in January. Since then I have had a lumpectomy and 2 nodes removed with clear margins and nodes. I am starting radiation next week for 3-4 weeks. I met with my oncologist last week and was informed that the cancer was hormonal and he wants to put me on Tamoxifen for a year. All of the reviews that I have read on this drug have not been good and I wanted to see what everyone has experienced while using the drug.
Thanks for your help!
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Lala1, I'm curious why the doc said no vitamin E. I hadn't heard that before and I take it. I guess I need to do some research.
LynnBM, I think you'll hear lots of different experiences from many of us. I have several side effects. Each one is not a big deal, but they are irritating to live with all together. It took a while before they started.
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ORgal--He said it was considered estrogenic. He told me to just try to find a multi with as small an amount as possible to reduce my exposure to it. But he also said he wasn't too concerned as long as it was the usual amount in a multi which is usually about 30mg. He just didn't want me to take any extra Vitamin E supplements.
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Hi lala1. May I ask you a question? I was diagnosed over 3 yrs ago and on tamoxifen. Not really having too many "horrible" side effects that I was really worried about however the conversation of removing ovaries has come up to eliminate estrogen all together. I see you have had that done and wondered about the surgery and if it was difficult to undergo?
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how come some are on Tamoxifen for years and then the suggestion of ovaries to be removed is done. You would think it would be suggested to do it at the beginning. Just wondering.
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Yes, good question. In my case my body is resisting the tamoxifen. I have been on it for 2.5 years and still not really experiencing any menopause. The shift is to eliminate all estrogen in my case but I am terribly worried about quality of life and all the symptoms of crashing into menopause vs. cruising into it slowly with tamoxifen. My recurrence rate is less than 10% and I feel its a little drastic to undergo more surgery......such a hard decision
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How do you know if resisting the Tamoxifen? I have one ovary and still no SE. MO said most people don't have SE. Hope that's true, because I wonder if it is working
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Maybe it's because of age / menopause status? One of the question my MO asked when I first saw her was, if I had any plan to have kids in the next couple years & the possibility to preserve some eggs before chemo. (I will be 43 end of March)
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twiggly---I am always happy to answer any questions! I had a total hysterectomy and ovary removal last January after having been on Tamoxifen for 2 years. About a year + into it, I asked for a baseline TVUS just in case the Tamoxifen caused any changes. I wasn't in menopause and according to my doctor nowhere near menopause. That TVUS showed that I did have some mild issues like a slightly thickened lining, ovarian cysts, fibroids and a slightly enlarged uterus. My doc and i agreed to a watch and wait mode. I had a TVUS about every 3 months, each time showing a little more. Finally my doc said you endo lining is getting into the territory of possibly being able to become cancer and I said let's do it. Best decision I made! I feel great! Yes, I went into surgical menopause which is supposed to be worse but I wasn't in menopause before so really I have nothing to compare to. I started getting hot flashes and night sweats after about a month. I'd get about 15-20 in a 24 hour period. They weren't dripping wet hot flashes and I'd have to do the covers on/covers off a few times a night but doable. Then my MO told me to try iCool which I buy from Walgreens or Amazon. Made a huge difference. Now i get about half a dozen in a 24 hour periods and they are much shorter and milder. I can totally handle them. I struggle to lose weight but haven't gained any. I go to the gym, ride horses, do yoga, whatever! And the recovery was so easy. Mine was done laparoscopically so 3 tiny incisions. One night in the hospital. Only Tylenol when I went home. No pain meds after day 3. Started walking as soon as doc said ok which was day 3 for 30 to 45 min total each day. I was driving at about day 6 and in the gym going easy once my doc cleared me at 2 weeks. Easiest surgery I did of all the BC stuff! And so glad it's done and I've reduced my chances of BC as well as all the reproductive cancers.
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I don't think it is correct that just because you don't have SE's, it is not working. I think it just has to do with your body chemistry.
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My MO has this plan for me:
Tamoxifen alone for six months; then Tamoxifen and Lupron for about a year. Then we evaluate whether to switch to an AI and/or consider ooph.
She does it this way because, if we were to do it all at once, she said it would be a lot more uncomfortable for me. She's all about keeping us comfortable, which increases our compliance. A lot of women quit their endocrine therapy, and that's just not an option for me!
I'm allowed to take vitamin E; in fact, my MO recommended it for chemo-induced hot flashes ...
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I had a follow up visit with my MO today and discussed vitamin E. She said it is fine, though did caution me against the standard recommendation of calcium supplements. She said that at my age, and because I am on Tamoxifen and not an AI, there is newly more concern about calcifications in the heart. (Like I didn't already have enough to worry about!)
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they can draw serum levels to determine how you are metabolizing Tamoxifen.
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KateB. . .I will have to look into vitamin E. . .had not heard that it helps SEs. I'm taking lots of supps. As for lupron, I had major fertility issues and my ds was in vitro which required a month of lupron before the fertility drugs. So I already knew lupron did not agree with me. MO and I discussed it and I agreed to try because I have a history or ovarian cyts and Tamoxifen increases the risk of them. After 7 months of lupron spread over 10 months I appear to be in menopause. Fingers crossed because I could not tolerate the lupron any longer. I am on Tamoxifen for 10 years planned.
Scottie
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Welp, I'm three days in and my hot flashes are back. In a way this is good--it means the Tamoxifen is doing something. But in a way it really sucks, too, as I was getting used to sleeping through the night again. . . .
Who takes melatonin? I've been taking 2.5 mg every night since I started chemo. Anyone taking more than that?
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I started taking melatonin about 3 weeks ago. I take 3mg. It does seem to help me but I am also taking .12 mg of Xanax. The only thing keeping me awake is the chills that I keep experiencing. Hard to sleep when you can't get warm. I want to stop the Xanax.
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My ND (with agreement from my MO) has me on 20 mg of melatonin.
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I used to take 3mg melatonin. Have bumped that to 5mg and added turmeric. I sleep better when I exercise each day and eat a light dinner w/ no spices, heavy fats or fried food. I love Cajun food. . .Zatarains etc. I can't eat any of that for supper or I will have a miserable night.
Scottie
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I take 3mg of Melatonin 1 hour before bed. It works great! Yea I have a couple of hot flashes while sleeping, just throw the blanket to the side and pull it back on when I'm cold.
I'm having a problem with my nails behind very thin, bendy, brittle and splitting. I put strengthener on them, but no luck. I have noticed being on Tamoxifen (Watson brand) that my skin is very dry.
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Lala1 Thanks so much for responding to my question. I feel as though my MO is being very aggressive to want to remove my ovaries but I also feel like maybe If I have the surgery and stop the production of estrogen that my recurrence rate will be reduced, even though Im not really at high risk. She said its the long term that would benefit from removing them now......sometimes its just so hard to know what to do. *sigh*
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I can not take melatonin because it gives me strange dreams (sometimes nightmares). However, a dr. recently told me that some of her patients who had the same problem (strange dreams/nightmares) started taking the gummy melatonin and that it worked better (no strange dreams). I am not ready to try it (but my daughter is going to try it as she gets nightmares from them too).
I am doing neoadjuvant hormone therapy (Tamoxifen and monthly Lupron injections) and at my 4 week check up (4 weeks from starting Tamoxifen) my tumor was softer and flatter (as opposed to a ball). I will have a scan soon. I have not (so far) had any hot flashes. I get cold chills. But, 5 now weeks into taking Tamoxifen, I honestly can say I have to try and find the lump. When I found it on December 15th, there was NO DOUBT about it. It was there and there was no missing it. If my tumor (in December) had felt like what it feels like now, I would not have thought it was anything (how scary!). I was very scared to do neoadjuvant hormone therapy because I just wanted this thing out of me. But, it makes me feel so much better knowing that we have evidence that the Tamoxifen is working. I hope this helps others who are taking Tamoxifen feel more confident that this drug works.
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What are the dosages of Gabapentin that most of us are taking? I take 600 mg. every night plus Tramadol for pain associated with Tamoxifen and also chemo induced neuropathy. I havent noticed that it helps with hot flashes at all.
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I was taking 10 mg of melatonin, plus a benedryl at night to help me sleep but it stopped working for me. Might revisit that regimen.
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tinydancer _ ditto on the thin slitting nails and dry skin.
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Blownaway - You might want to check with your doctor, but I believe that Benedryl is contraindicated for use with Tamoxifen. I think on occasion is okay, just not nightly. I am the poster child for dry skin since starting Tamoxifen (used to be oily).
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BlownAway - I take my gabapentin in three doses throughout the day - Now up to 300 at 5am, 200 at noon, 300 at 7pm. I was told that it should be divided up and to titrate very slowly, both up and down, as you can get SE if you rush it. When I increased to 300 at night, had some odd things happening with memory, word selection, confusion. Had to stay at 200 for several weeks - I do hope this is as high as I need to go.
As far as Benadryl, please check that out as that is one of the meds I was warned about when starting and it is clearly mentioned in the Tamoxifen literature as a medication to avoid while on Tamoxifen. They have the medications divided into "high" "medium" and "low" and Benadryl is a "high" as contra-indicated. Just check...better safe than sorry in my opinion.
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