Bottle o Tamoxifen
Comments
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Interesting what all these MOs say. Mine said no supplementation with Vitamin E (it's ok in a multi vitamin but no extra) and no flaxseed or soy beyond what's in my regular foods and supplements. Not really sure why the Vitamin E but anyway, that's his list.
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Hi lala1, loral, etc... With regard to the flaxseeds and soy, I have decided to go the natural route versus taking tamoxifen, and with that, have read many books on healing cancer naturally (well other than my surgery and radiation). Now, my focus is all about non-recurrence. There are not well known studies about the flaxseed that I know of, however there is an interesting read about them regarding the Budwigs diet/museli. It was enough info for me to start making the museli every morning which includes both flaxseeds and flaxseed oil. But I have found a lot of different opinions from almost everyone about certain foods. Some say one thing is good, the other says its a no-no. Soy seems to be controversial, and some of the books say don't bother with something so controversial, whereas Christine Horner MD in her book says natural forms of it are good for you based on the Asian women having such low breast cancer occurrences. So, I think it's also important to trust what feels right for each of us while being as knowledgeable as possible. I have also changed my eating habits dramatically to stay as healthy as possible, I stopped eating sugar (cancer LOVES sugar), am now gluten free, no processed foods or dairy, and eat a lot of raw foods. It can only help ;-)
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BreatheDeep, I have to admit, I get confused of what is good and what isn't because it seems like no one knows for sure. I have cut sugar out of my diet too and told both my MO and RO about it and they both said the exact same thing, cancer does not feed on sugar, but sugar makes us gain weight, especially in our midsection and maintaining a healthy weight for our body type helps with not getting a recurrence, but I'm not taking any chances so I keep it out of my diet, but I will eat a piece of chocolate from time to time.
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Okay, so I thought I'd check in with an update on my current tamoxifen experience. This is my second try having moved to AI+OS and then coming back to tamoxifen.
First, the good: inspired by the women here I rededicated myself to a long slow path to fitness. That means, not exercising myself into a stupor everyday and not starving myself but taking a deep breath, being patient, and doing sane things. I have been watching my portions, drinking lots of water, and running and walking nearly everyday. I got on the scale yesterday for the first time since switching to tamoxifen from exemestane. Mind you, I had been weighing myself previously and been just miserable. It seemed like the needle just would not budge. Yesterday I found out that I lost 6 lbs in the last month. It is not a lot in the scheme of how much I have left to lose right now, but to be on the downward slope is huge for me right now. I want to thank the women here who were so encouraging that it might be possible! My joints are almost all better after the disaster that was exemestane and so running and walking and taking the steps are again in the realm of possibility.
In terms of the bad, the only SE that I can report right now is constipation. I am taking that Vitality/Calm stuff and it is helping. I have always had these issues but they are definitely worse on tamoxifen.
It's early days yet as I am only on my second bottle but so far so good. I was really worried that I would start to feel that mental fog immediately and it made me feel so anxious. But I taught a course to some retirees recently (folks I taught just before I was diagnosed) and they didn't notice anything. For them, I was still plain old pre-cancer me, and that meant the world.
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I'm super frustrated and just want to complain a bit! I'm 4 weeks in to taking Tamoxifen at a half-dose and feeling terrible as of a few days ago.
I've had a headache non-stop for over a week, I can't seem to think very well and my job is suffering, I'm ridiculously moody which is NOT like me, my joints are killing me (much worse than usual), I've had pelvic pain that's so bad the last two days I've had to take large doses of ibuprofen or tylenol all the time to counter it, and my eyes are blurry and watery and hurt. My MO said he didn't think the half-dose would keep the SEs away, but I was so hopeful!0 -
SummerAngel, so sorry to hear that you continue to experience so many SEs on the half dose. I had many of the same SEs as you and 1/4 dose was enough to do me in. I had CYP2D6 genetic testing done and am a ultra rapid metabolizer of tamox. I wouldn't be surprised if you are as well. Like you, I didn't experience the most common SE: hot flashes, but my SEs were brutal enough to make me quit. I didn't have any other pre-existing conditions or pain pre-tamox. It took a good 4 weeks for the SEs to subside in their entirety (I tried and quit twice in a 5 month period). If I recall correctly, you are a programmer, so the eye issues must be particularly worrisome. Are you considering OS+AI at all, or would you just quit tamox? Personally, I am in a good place mentally with quitting tamox and not pursuing other hormone blockers. Good luck with whatever you decide to do, and I hope you can be at peace with your decision.
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Downdog, it's interesting that your testing came back as a rapid metabolizer! Maybe I am as well. It's also very interesting that you didn't get hot flashes, either. It's been getting cooler here in Colorado the last week or so and I'm naturally cold so I was hoping for a hot flash or two!
You're correct, the eye issues are particularly bad for my profession. Of course, not being able to think straight is a big concern as well. I've been working on a complex algorithm the last few days that has given me more trouble than it should - by far! Because I already have a connective tissue disease that causes joint pain my MO didn't think OS + AI would be a good idea for me (and I agree). Plus, with my stats I should have a low risk of recurrence, anyway. I don't think I'll have much trouble accepting just going without any hormonal therapy. The only (very slight) worry I have is that I never had an Oncotype test on the right-side tumor and there is a (again, slight) chance it could have had a higher risk score.
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Question... Has anyone else experienced the SEs disappearing after an ooph? Tamoxifen has been wreaking havoc on my body... Arthritis, 40 lb weight gain, pre-diabetes, non-alcoholic fatty liver, plantar fasciitis, brain fog, panic attacks etc.... All medically confirmed to be directly caused by tamoxifen. I am 3 days out from surgery and have not felt this good since my tamoxifen break. My debilitating pain is gone, including the plantar fasciitis. I am feeling like my body was fighting menopause and the estrogen sucking properties of the medication.
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Professor50 - Try 250 mg magnesium with every meal (3 times daily). After about 3-4 days, I promise you will see a huge improvement in the constipation. If things get a little too squishy (pardon my description) cut back to 1 at breakfast and 1 at dinner. Magnesium also helps you absorb your calcium better. Hope you feel better soon.
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Thanks Blownaway! I will give it a shot! If it works out I will seriously be without complaints. Fingers crossed.
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Hi 6doggies, I'm with you on that occasional piece of chocolate, but I have found some fantastic recipes on some Paleo diet websites that have helped me be able to make chocolate desserts without sugar or dairy, and they're pretty darn good! Its so unfortunate that doctors get so little nutritional training in medical school it sure would come in handy. But I support your decision to stay away from it regardless. There are many books on the poisons in refined white sugar, all one has to do is google it and there is plenty to read on the subject.
Professor50 - congratulations on rededicating yourself to fitness, that deserves a big applause!!
SummerAngel - I'm so sorry to hear you are experiencing such bad SE's, my heart goes out to you. I knew after one day I couldn't take it and in that one day, my eyes burned so bad I could hardly stand it. I applaud you for doing your best to make the right decision for yourself.
RobinLK - I have read of women in here feeling better when they took a tamo break but I do not have personal experience of that. I'm sorry to hear you are not feeling well in so many ways because of it. I know you are not alone.
Lastly, there is an an interesting looking docu-series starting on October 13th, its free and can be watched online, Sounds interesting, called The Truth About Cancer, so I'm going to watch it just to see what might be new. I'll put the link here, but if it is removed just message me and I'm happy to send you the link privately if you are at all interested. https://go.thetruthaboutcancer.com/?ref=4ef44758-464a-40ba-85bd-f865536f8361
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I'm supposed to start this weekend and I'm terrified..
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I'm 34 and just started tamoxifen on Monday. I split my pill in half and took half in the am, then pm. So far no side effects. Its such a catch 22. I was concerned about all the SEs and hoping to not get any. Now that I don't have any I wonder if it's working. I know for some the SEs come s few months after. For now, I will be thankful!
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Unbreakable, I don't think you have to worry about the lack of SEs meaning anything. It seems like there very some very small sample early studies suggesting that SEs were associated with the drug working. BUT larger, better studies have born out that this is not the case. I know it is hard to imagine, but I am confident that the statistics are true and that there is a great (largely silent) majority of women who experience minimal to no SEs at all. I'll keep my fingers crossed for you that you get to be one of them! If not, don't give up. There are lots of ways to reduce your recurrence risk.
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Professor50--I second the idea of magnesium. My holistic doctor, MO and all 3 of my yoga instructors told me that magnesium would really help with constipation issues and they were right. I have been taking 2 SloMag tablets a day which is only about 150mg of magnesium but also get some in my multi and some foods. Over the summer, i felt my Tamoxifen muscle pain was increasing (which my holistic doc had said the magnesium would help with that as well) so I have upped my intake to about 350mg a day. My doc did say that 350mg of magnesium a day is a pretty standard dose and to start with that and adjust if you have loose stools. My whole life I was one of those people who had a BM maybe two or three times a week but magnesium has put me regular!! Just today, I was thinking how much better I feel! Muscle pain is mostly gone which I credit to the magnesium, ginger and turmeric. Constipation is gone thanks to the magnesium and hot flashes are few and far between and pretty mild thanks to iCool. I was just thinking this morning how good I have been feeling lately so I guess there's hope! And interesting about you losing weight once you quick working out so hard. The nutritionist at my gym told me the same thing. Once I quit stressing about he weight, I started to lose. Granted it's only been about 4 pounds but I'm ok with that! My MO said most of his patients gain around 40 pounds in the first year on Tamoxifen so he's quite happy with me.
RobinLK---I've been on Tamoxifen since Feb 2013 and in Jan of this year had a hysterectomy with ovary removal as well. Up until about July I was wondering if it was worth it because of muscle pain, weight issues (not gaining but unable to lose with lots of exercise) and generally feeling poorly. I even had bouts of plantar fasciitis. But just in the last couple of months, I seem to have found my new normal. I exercise, eat decently (most of the time) and use supplements to help with issues. I am still on Tamoxifen but this is pretty close to the best I've ever felt on it. Don't know if it was the hysterectomy or just my body finally adjusting to Tamoxifen.
tresjolie2---I was terrified too and now realize there was no reason to be. Even if you have SEs, most can be handled with exerice, diet and supplements. The women who have severe SEs are rare. Breast cancer is sucky enough. Try not to let the Tamoxifen be sucky as well. Keep telling yourself that it's helping to keep you cancer free. And any SEs or questions, just come here and ask. There's a huge number of women here who will help you get through the Tamoxifen days....or suggest alternatives if that's what you need. I've actually finally managed to make my brain "like" my Tamoxifen. I'm now more worried about stopping in 8 years.
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I've been on Tamoxifen for two months with no appreciable SEs. I have had some mild hot flashes (maybe warm flashes) but as I was heading into menopause anyway, I don't find them debilitating. I am working out and watching my diet and have actually lost weight. I wouldn't be too scared SE's can be dealt with for the majority. I guess the only way to know if you'll have SEs is to try it. Remember, if SEs become unbearable you can always stop. Good Luck all
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Lala - I had a hyst in '99 but kept the ovaries. I really felt like my body was fighting the tamoxifen. I cannot believe how much better I have felt since my ovaries were removed. I do feel it is directly related and was curious if it was just me. Happy to see someone else has a similar experience.
I could have stopped, but I have heard 3 times, by 2 doctors in 1 month. "Your cancer is just too aggressive." That pretty much sums up my next 10 years...find a way to make hormonal treatment work.
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So, I made an appointment for a second opinion about the Tamoxifen my doctors prescribed (even though I am not taking it but the whole thing still makes me nervous) as I wanted to hear from someone outside of the group of doctors I have been working with. I drove 90 miles to an oncologist, he's a BC specialist, and an author on breast cancer and he told me about something I want to share with you ladies here as I have not heard of it yet, probably because it's new.
There is a test called the Breast Cancer Index (BCI), the following text is taken from their website: "Breast Cancer Index (or BCI) is a new test to help determine if you are likely to benefit from an additional five years of anti-estrogen medication. BCI can also provide additional clarity around the risk of cancer returning between 5-10 years after diagnosis. BCI requires no additional procedure for you. The test is run on the very same tumor specimen that was removed at diagnosis."
It's worth checking out if you want to do a little more research, the link is: http://www.biotheranostics.com/patients/bci/ and also http://www.answersbeyond5.com/
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Both my MO and my BS told me from the very beginning that I would be on Tamoxifen for 10 years. This was before any surgeries. They said they had attended a recent conference where results of a study showed additional benefit with adding 5 years to my plan. My MO said at the time that he would have me on Tamoxifen for 5 years then reevaluate whether I stayed on Tamoxifen or went on an AI depending on if I went into menopause. I had a hysterectomy this year so at my last appointment with my MO we discussed whether I should swap to an AI. We both agreed that since I'm doing pretty good on Tamoxifen and my recurrence risk would only decrease by .5%-1% if I went on AI, that I would stay on Tamoxifen for at least 5 years.
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Jul 8, 2015 12:08PM DianeNYS wrote:
I thought that it would be good to give an update, since so many people are starting this med at this time...I started Tamoxifen on 4/15/2015, and it's been pretty Okay for me. My weight has turned out to not be an issue; I started the med at 129 lbs. (I'd been losing weight since 7/1/2014--started at 150 lbs.--and was afraid that the weight loss would stop, and that I would even begin gaining what I'd lost, back), and almost 3 mos. later I am down 7 lbs., to 122 lbs. at this time (my goal is 120 lbs.)
I eat a low-carb, grain-free, sugar-free diet; count calories; and work out moderately for 1 hour/day, 5 days/week. I've been doing this, though, religiously since July 2014. When I'd started the Tamoxifen the side effects were insomnia, leg/foot/muscle cramps, and warm flashes (I'd already gone through menopause in 2001--I'm almost 62--so maybe that's why my flashes were not "hot"?). I take 1,000 mg Curcumin Turmeric/per day, and Magnesium Carbonate/Citrate powder, 2 teaspoons/per day. I've already been taking Calcium, Vitamin D and Flaxseed Oil for years now, so I don't know if they have been helping with Tamoxifen symptoms or not.
As of today, the muscle aches and pains come and go here and there, but nothing unmanageable and not chronically. The insomnia has disappeared, and I believe that is because I take the Magnesium powder before bed (I take the Vitamin Shoppe's version of "Natural Calm", called "Calm Zone Magnesium", which is much cheaper). The warm flashes have disappeared, and I have to say that as of now, I'm really feeling very good. And at 122 lbs. I'm fitting into my favorite pair of jeans that I wore in High School--44 years ago
Another update:
As of today, I've been on Tamoxifen for 6 months. And as of today, I now weigh 118 lbs. (I changed my goal weight to 118 lbs. so that with the inevitable ups and downs of 2 lbs. or so each day or week, 120 lbs. will be my maximum weight). Learning how to maintain that weight, rather than losing more, will be a trick, but I'm up for it
So, in 6 months on Tamoxifen, I went down from 129 lbs. to 118 lbs., my goal weight. I mentioning this just so those new to Tamoxifen, and worrying about weight gain being inevitable, can know that it doesn't always happen. All of my side effects--as mentioned in my July post--are still under control; even more under control than before. I'm rarely bothered by them, so am still on the same supplements with no problems. There's also something else that has surprised me...I'd had major problems with cervical atrophy, painful intercourse and loss of libido ever since I'd gone through menopause in 2001. I had been diagnosed with the atrophy in 2006 or so, and given a prescription for Premarin Cream, which I just used as needed (as a lubrication, mostly) so as not to have regular estrogen doses in my system. It helped me a LOT, and kept me "in the game" so to speak, with my Husband
But once I'd been tracked (in 2014) for breast cancer prevention due to family history and my own history of dense breasts and a benign breast tumor, I had to stop the Premarin, and the atrophy and loss of libido came back with a vengeance. I really thought I'd never have sex again, pretty much
As part of that breast cancer prevention (I track at a 34% lifetime chance of BC without meds), I was prescribed the Tamoxifen, and started that on 4/15/2015. Well, wonder of wonders, within a month I found that my atrophy was not hindering intercourse anymore, and sex became "doable" again! Now, 6 months later and still on Tamoxifen, my atrophy is not only NOT a problem, but I'm not even needing lubrication most times, and my libido is almost BACK
Not like I'm 20 years old again, but definitely in the range of "I'm good with making love again, and this is FUN!" So, maybe there's hope for others with this issue? I wish everyone well...0 -
DianeNYC: Thank you for your inspirational post! Especially, the libido part! This whole experience is enough to dull the whole desire to be intimate. I have been "in active" since 2013, I hope I can enjoy this life experience soon. Lis
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DianeNYS, THANK YOU! It's so nice to read an encouraging post.
I've been on Tamoxifen for just over 2 months and so far, so good for me in every department- I do have some aches in my hips that weren't there before but I can live with that. I do think that most ladies that have good or "okay" experiences just aren't on cancer boards talking about how great they feel, they are just out there living life to the fullest... so negative experiences get more attention. Thank you for sharing!!
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Lis: In reading your signature lines, I certainly feel for you, and understand completely why you are reticent about intercourse right now--I would be too, I'm sure {{{{{hugs}}}}} I do hope that eventually that will change for you, like it did with me. It's actually a HUGE surprise for both me and my Husband, because I've been so afraid of intimacy and even negative about it for so long. One thing I didn't mention is that when I DO need some lubricant, I've found that coconut oil has been REALLY nice and helpful. Better than any of the over-the-counter remedies that I've tried
Free123: I'm sure you are right about people mostly posting their problems and those without them tending to move on...I'm glad you are doing well right now, and in my own experience, by my 2nd month on Tamoxifen things were pretty much where they have stayed so far. One thing I've forgotten to mention is that I'm now also taking Ginger (along with the Turmeric and Magnesium powder) for the aches and pains, and I do think it's done a good job helping. Another thing I've added is Wild Alaskan Salmon Oil gelcaps, after reading about it on this site (and on the Atkins site, where I read for my way of eating). I've taken out my Flaxseed Oil gelcaps, since I've been adding flaxseed meal instead. Other than that, everything I'm taking is still the same...
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I have an odd question that I can't find an answer to and I'm curious. I'm hoping someone can help. You know how we're not supposed to eat grapefruit or drink grapefruit juice while taking tamoxifen, well, what about using products containing grapefruit oils or extracts such as body lotion, shampoo or conditioner? Should we avoid those as well? I guess I could ask the same question of lotions, shampoos, and conditioners containing soy, too. Thanks!
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Hi,
I just got my Tamoxifen script and so scared to take it. I previously read that some generic brands cause less side effects. I think I read Mylan was preferred over Watson for some people. My CVS carries Watson and pharmacist says she hears of no complaints. I also heard of Teva brand. I still have the script and will try a different pharmacy if the responses lean towards another brand.
I would appreciate any info.
Thanks,
Lovey222
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
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welp, here I am. Going to pick up my bottle after work today. This certainly came as a surprise!
I'm just finishing up rads next week. I called my MO for an appointment telling her nurse that I will be taking a trip to France for two weeks on Nov 8th, (a present from my wonderfully supportive boyfriend!). I didn't know what the MO would say to that. The original plan was to start ovarian suppression and an AI after radiation. So the nurse said the MO wants to start me on tamoxifin right now and I should see her as soon as possible when I get back.
I'm a little bit concerned about starting a new drug and being in Europe. I'm also kind of surprised she wants to have me take tamoxifin since she pointed out studies back when I saw her before surgery that AI's are preferred over tamoxifin for lobular cancer.
IDK, maybe she just wants to see me on something? It's been 7-8 months since I found the stupid lump. Is that a long time? IDK.
I'm just crossing my fingers that I'll be OK on this trip. Any advice on what else to bring in my "cancer pac" to Europe besides a bottle'o tamoxifin and my newly purchased compression sleeve?
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Lovely222, I have taken both Watson and Teva and saw absolutely no difference. Now my pharmacist says she can't get Teva bc they've been bought out or something. But I told her it didn't matter bc I couldn't tell the difference anyway . I know a lot of ladies disagree and can tell a difference in SE's and I was all prepared to have to go into my pharmacist and demand a certain brand, but no… I can't see any difference. The only SE I've had is aching in my hips/butt but I can live with it. Magnesium citrate seems to help. It's worse if I have to sit in a car for a long time. Overall, I've been surprisingly fine!
Mira845, I can't speak to which is better for your particular condition, but I would see about taking baby aspirin or something for the plane flight due to the slight potential for blood clots with Tamoxifen. Have a delightful trip! How wonderful!
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Free123, thanks for the advice. Its comforting to know that you are doing well.
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Free - I quit taking my Tamoxifen in April, but I only tolerated the Teva. Any time the drug store gave me a different generic I would end up with a yeast infection. Yuck.
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