Bottle o Tamoxifen
Comments
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Alicia, enjoy your week
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Alicia: So happy to hear that the scan was clear. You must be enormously relieved. You do deserve a vacation from Tamox after all you've been through.
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I need a T-cation too.
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Count me in all of you that are planning a vaca from the Big T.
I'm more than ready for say at least 2 weeks.
CS: Have you ever researched the safety of a Tamoxifen short term vacation ??? I have read on some of the forums how some took themselves off....most WITHOUT asking... and enjoyed a brief stint without it.
Bonnie
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I have been taking Tamox for a couple months and all of a sudden I get so tired mid afternoon sitting at my desk. I never had this problem before. Does anyone else notice tireness??
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JustmeAlicia Congrats on the bone scan!!!! That's great news! Glad you're feeling better.
Diane
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Hi Mari,
I have been on Tamoxifen for over a year now, and just the last couple of months I have noticed being very tired. Almost all the time. Without telling my doctor, I put myself on a Tamoxi break. It has been almost 2 weeks, and I feel great. No fatigue at all.
At least now I know that is most likely what is causing it. I hate to start it back up, but I suppose I should at some point. I get so tired of this disease and all it's side effects.
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Thanks for the well wishes ! Yes, I too when on the tamoxifen around 2 - 3 in the afternoon I could nod off. So tired. Definately zaps some of my energy. This Tuesday will be 2 weeks off of Tamoxifen. And I feel great. All the aches and pains are gone, crotch area is normal - no itching, dryness etc, and I am not so tired. Oh well. 2 weeks off was nice. But Tuesday evening I will swallow that darn pill again and give it a whirl !
Hang tough girls.
Alicia
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Hi:
I just got a call that I can take a DNA test to see if my body metabolizes the tamoxifen,if
not it will be a waste to take, only 10% women have this, the test has been around for 2 years
have you ladies heard of this. My oncologist at UCSF is giving it to me on Wed. He says if i test in the 10% the tamoxifen would be to a disadvantage have to use alternatives. Has anyone heard of this test.
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Yes. search for cyp2d6 and tamoxifen and you will find lots of posts about it.
Many of us have had the test, and early research seemed to point to the results being a good predictor of how well tamoxifen would work for you. Unfortunately, later result weren't very clear cut and what the results mean in terms of your actual outcome is being debated.
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Thanks auriga, I never thought about fatigue. I never had any fatigue during rads. Will this go away or or is it a SE that I will have to live with???
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Michele - welcome to my world! I am dizzy and feeling off-balance most days. I actually fell in my driveway last week!
It started just after my last chemo treatment, subsided then started up again after radiation.
When I started taking Tamoxifen I noticed that it got worse for a bit (accompanied by headaches) and now I just have a general lightheaded feeling (wobbly).
My BP is normal so I've just been attributing this to the after effects of chemo...hoping it will go away at some point!
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Mari65 The huge fatigue of rads disappeared for me - although I now get occasional fatigue from T
Elizabeth - The CYP2D6 test is becoming more common although many oncs do not yet believe in it. I organized the test myself from Canada - so glad I did as I only partiallymetabolize it (better than not at all though), joining about 35% of T takers. As a result, I am on 30mg of T (standard is 20) and I watch what I eat like a hawk - trying to avoid all phytoestrogens as it appears they further inhibit the metabolism of T.
Have a good day all
xo
C
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bcamnb: I'm an intermediate metabolizer too. What foods do you cut out to avoid phytoestrogens? - soy, flaxseed, what else?
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Yes, Gunner! I just had the cyp2d6 test also! And I passed with flying colors...I'm so glad, because I didn't want to take either the Femara or Arimidex! So I only have 4 1/2 years to go. I have also heard, that it would probably still help you, if you were a "low metabolizer".....Just talk it over with your Oncologist. Jeannette
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Hi Mary,
cs will tell you flax is OK but I still avoid it.
Google phytoestrogens; food phytoestrogens; beverages...
I avoid soy (watch out in breads, cookies, vitamins....but soya sauce is OK), flax, licorice (including tea), citrus peel (in many herbal teas, fruit breads...), red grapes, red wine (only have 2 glasses of white wine/week - the ethanol in alcohol is deadly for us); hops (beer), chocolate (in moderation - it contains revesterol), and combinations - like garlic, chick peas, sesame oil/ seeds, (hummus)....one would be OK but in combination = a lot of phytoestrogen. Those are the main ones off the top of my head....
C
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NO NOT RED GRAPES??!! Ok I guess I should have figured that one on my own but it didn't occur to me till I just read your post. UGH I thought I was being all healthy with my snack of red seedless grapes. I feel like there is so much I can't eat that I should just stick to celery sticks and my daily doses of vitamins/supplements and water.
Hey I have a question for you ladies before I see my onc next week and ask him. I have a twin sister and she had an MRI and is totally fine, never had any issues. But I was wondering if she should consider taking T as well (misery loves company and all
) and if they even prescribe T for someone just at risk without signs of BC. Any thoughtsDiane
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Marie, good to hear I am not alone....sucks that you have to suffer as well. I will see all my ONCs in the next week. And then a cardiologist as well...It scares me when I feel this way. my mind always goes to the dark side...lung cancer, heart failure, brain cancer...the list goes on.
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Gunner: I had the blood test to see how well I metabolize tamoxifen. I was in the intermediate range so my Onc increased my dosage to 20mg two times a day. I guess some docs don't really think it matters but mine does. She said the study I am in seems to be leaning towards the direction that if is beneficial to take a higher dose if you are not in the extensive metabolizer range.
TCK
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bcamnd - Wow.....and I thought I'd been SO careful about foods! I avoid flax and processed soy, but I hadn't heard about red grapes.....or heaven forbid hummus.....which I honestly eat nearly every day for my afternoon snack! Good heavens....breast cancer sucks! (and I hate to use that word, but it's perfectly appropriate at this moment...)
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TCK and Val - I maybe overdo it but I REALLY want that T to work - and when I am out I try not to embarrass my host so I eat most things and just shut my brain off to the baddies that might be in it.
And interesting about the 30mg vs 40 mg. My onc thought the Canadian way was compromise, so not 20 or 40 but 30!!!!! Well, I WILL keep an eye on this.
I think in a year or so, I will pay to have my endoxifen levels checked. Then I will REALLY know if T is working.
C
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bcamnb: I recently had my appt with my Onc and they did redraw blood for the study. I really need to call the study nurse and see what my levels are after being on the increased dose!!
TCK
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I'm still a little confused about phytoestrogens, I did google it but I think I need to do it again. I eat flaxseed bread occassionaly, soy not so much. I guess I will take a look at what I eat again, but one thing for sure is I eat a lot of brocolli.
I have another question. Does Tamoxifen make you gain weight? I have been eating right, I eat lots of fruits and veggies and I watch my calorie intake, but instead of losing or maintaining I am gaining weight. I am a little bummed here.
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Terry I think it can go either way. I lost weight. I have become a bit of a piggy in the evenings, because I am getting lazy with my eating habits. Lets hope that is doesn't come back to haunt me...I know lots of women do gain weight.
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Tarry - I am definitely one of the ones gaining weight. I exercise almost every night, eat fairly healthy and am still gaining. At this point I would be happy if I could just maintain.
I am trying to avoid some things with phytoestrogen but it is too difficult to avoid them all. There is a lot of debate about if they really increase risk or not like estrogen does. I am avoiding soy and have cut back on the flax seed tortilla chips I eat but feel like avoiding it all together would decrease the quality of life too much. It is definitely and individual decision.
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Phytoestrogens - the problem is they inhibit tamoxifen and I for one do not want ANYTHING to inhibit it!!!
C
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I am one that has thankfully lost a bit of weight.
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Hello everyone- I am new to this site and the whole posting thing. I find out I had breast cancer in June when I went to get my mammogram once I turned 40. I had a mastectomy in July and the dr said I did not need Chemo but would need to take Tamoxifen for 5 years. I picked the Tamox up a few days ago and after reading extensively about it- I'm not sure which is worse- the fear of the cancer coming back or the fear of the severe side effects of Tamox. I don't know what to do. If I take the Tamox I will be horrified everyday that I am going to have a stroke or something crazy. If I don't take it then I will be worried about cancer- UGH. Any insight would really help me out- I tell myself I am over reacting but from everything I have read I just don't know.
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Denise just remember everyone reacts differently. I was worried too but as my onc said if I have terrible SEs from T I can stop. I took it only for a week and stopped not because of SEs of T but SEs from Chemo. Now that I feel better and ready to start again (without fear) I am heading into surgery soon so my onc said to just wait until after surgery to start taking again.
I took the advice of the ladies on this thread and took it in the morning. Although I only took it for a week (so far) I didn't notice anything. I do think if you have a healthy diet and exercise of some sort you can avoid some of the side effects. As my onc explained to me the really horrible SEs are very rare. There's no harm in giving it a try!
For some of you experiencing joint pain, I've been having terrible pain in my ankles and hips since my last chemo. I've been doing morning yoga and streatching and exercising and it seems to help BUT what I discovered this week (for me anyway) is that since ending chemo I haven't been as careful with my diet as I was on chemo. I wasn't sure I was getting all the protein I needed since I have been so busy with work and was sorta eating on the go. So anyhow, Kate33 recommended Body Choice Protein shots. It is a liquid protein drink. Well, I have been drinking them and I also bought another liquid protein with 42g of protein and mixed it with club soda and drank it all down twice a day. I am now on day 4 and this was the first morning I stepped out of bed like the spry young 43 year old I am. My ankles dont hurt and my hips feel sooooo much better. So my adivce to anyone who is experiencing joint pain is to try increasing your protein intake. These liquid proteins are an easy way to do it without adding calories!! It worked so far for me thought I'd pass it along.
Hope everyone is having a good weekend!!
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Denise I was scared to take Tamoxifen after hearing the side effects. It took me a week to start taking it. The only side effect for me right now is the weight gain. I also take it in the morning and so far nothing major has happened. For me I had to weigh the good and bad of taking it and the good won out in the end for me.
Diane, I have been having this terrible pain in my knee since taking the Tamoxifen, but was told that it was probably arthritis. Well none of the supplements that I take for arthritis helps this pain and it comes and goes when it wants. I did find that Tiger Balm liniment helps to calm it for a while. No matter what they say I still think it is the Tamoxifen.
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