Bottle o Tamoxifen
Comments
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Thanks for all your responses, Lonnie,ladyb, Cidney. I didn't tell my employer about my diagnosis/treatment. Because I truelly wanted a fresh start. The job I left in October knew of my Cancer diagnosis and treatment and I even prepared a letter stating my rights under the ADA and asked for adaptation s.Their response was that they never treated any employee any different because of certain meds.But I guess it's worth a try.
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I was very pleased to learn to learn today that my cholesterol has gone down nearly 15% after 3 months on Tamox. It runs in the family and my levels have been inching up for 5+ years. I know some others here have also experienced a drop, so I'm curious to see if it keeps going down. I'm on Tamox/lupron combo and have lost a few pounds. Definitely trying not to gain so I'm upping my exercise as much as I can before exchange.
Scottie
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Hi Texas ladies! Blownaway, that is awesome that you have been able to drop weight, can I ask you what you are doing as far as diet?
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Is it the Lupron maybe?
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Cindy K - I've been limiting bread and starches and only have dessert on special occasions. Other than that, I've been making my plate with only 1/2 portions (compared to what I normally would be eating). If I go to a restaurant, I take 1/2 of my meal home to eat the next day. I'm not counting calories or points - just keeping it simple. Drinking lots of water.
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My hot flashes and night sweats suddenly stopped. It feels good not to have them anymore but I am curious of reason for the change. Could taking magnesium have such a drastic effect? Not that I mind it if in case it is because of the magnesium.
I am starting to break out and I haven't had a pimple on my face since last year. So wondering if my ovaries are slowly waking.
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hi warriors,
Can you provide me with brand name/dosage of magnesium that you are taking, also is it citrate??
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I take SloMag which I buy at Walmart. This was the brand suggested by my holistic breast doctor. He said it was the best type of magnesium at a very good price. The dosage says to take 2 tablets a day which I did for the last 16 months. I was taking it for the leg pain from Tamoxifen which I had pretty bad at night. Then I had a hysterectomy with ovary removal which caused hot flashes to start and my night time leg pain to increase (menopause is known for causing muscle and joint pain) so I've upped my magnesium to 3 tablets a day. I also upped my turmeric and ginger and have gotten rid of my leg pain and gotten my hot flashes down to a couple a night.
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I started the Tamoxifen on April 15th, so today is my 10th day. I'm now noticing that I'm having worse leg and foot cramps than usual; I've always had to be careful of having charley horses in my calves off and on, but since taking the Tamoxifen I'm getting them almost every day. The foot cramps used to be few and far between; now they are more frequent. I take Magnesium and Potassium and that always helped keep them all--the charley horses and foot cramps--at bay; they aren't doing the trick as well now. I have to figure this out at this point...I may try upping them, taking them at night before bed again (I take the first doses with dinner)? My Magnesium is an oxide, not a citrate though...would the citrate be better for this?
However: I weighed in again today at 127.2 (after being between 127.6 & 128.8 since April 3rd, I first weighed in at 127.2 on April 21st, and feared an uptick today), and I'm thrilled that I'm keeping my weight from going up on this med. I'm being super vigilant: exercising 5 days/week for an hour each day, and continuing to faithfully log my meals and keeping my calories and carbs on plan. I truly hope to be able to lose the rest (even though it isn't much; I just want to reach 125 lbs.); it's very important to me for some reason...Though it's just a number on a scale, I really want to be at my pre-pregnancy weight, and the weight I was in my 20's-40's (I'll be 62 this Summer)...0 -
Yeah!!!! DianeNYS - Glad to see I'm not the only one having good luck with the weight loss while on Tamoxifen. During chemo/steroids (and complete vacation from exercise) I got up to 140. This morning I weighed 126.8 and I too want to weigh in at 125 or slightly below and stay there. I probably should weigh less than that for my height (5'2") and small bone structure but then I would have to buy all new clothes.....Hope we both manage to get where we want to be.0 -
Wow...we do have things in common, Blownaway
I'm also 5'2" tall, and should probably be more like 120 lbs. than 125, but I've found in my lifetime that 125 is more manageable, without starving myself and feeling deprived. I'm almost into my skinniest clothes now, and if I got too close to 120, I'd have no "reserves" in the hope chest in which to fish out what I'd need to wear as I get closer to goal...I don't consider myself "small-boned", though...I've always thought of myself as short but "medium-boned", hence the justification of 125. That's my story, and I'm stickin' to it
I just hope I can reach my goal and be able to maintain on Tamoxifen; I've worked so hard to get to this place that I'd hate to have it all unravel (I weighed 150 lbs. when I started working on the weight loss on July 1st, 2014). I hope we both--and everyone else who is trying--can accomplish our goals...
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Hi all! I will be starting tamoxifen in the next couple of weeks. I'll be 54 in October and was still menstruating until chemo put me in chemo pause back in November. I met with my MO yesterday and he laid out all my options. I can understand why I need ovarian suppression (Lupron or ovary removal) to go on the AI drugs. But my MO is suggesting OS even if I'm taking tamoxifen. Is anyone else of similar age and menopausal status doing both OS and tamoxifen? What are the reasons for this? I can call the MO, but I'm wondering what others have experienced.
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amylsp, This is probably why: SOFT & TEXT results
The link goes to a presentation showing the results of the SOFT and TEXT trials that demonstrated that ovarian suppression (+ Tamoxifen or an AI) was associated with better outcomes, compared to tamoxifen alone.
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News to know....New Study!!!
Coffee 'could halve breast cancer recurrence' in tamoxifen-treated patients
Last updated: Thursday 23 April 2015 at 8am PST
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Thanks so much Professor50. I remember my MO mentioning something about the SOFT trial. I'll check out the link.
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amylsp,
I've been on Tamox since late Dec. and Lupron since Feb. I'm highly ER+ and was not even close to being menopausal so MO highly recommended OS. Just had a baseline ultrasound today and I'm now in chemical menopause. Oofs have shrunk down. The Lupron did increase the SEs, however. I'm on Gabapentin for the HFs. Good luck.
Scottie
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I'm on tamoxifen- almost 50yo - estradiol levels negligible- FSH 25 so not out of the park- I guess MO feels overkill to do OS at this age but wants to be careful just in case period comes back so still on tamox- maybe when FSH higher she will switch me. Meanwhile I'll keep drinking coffee and not feel guilty about that second cup- hopefully that can do the trick till I get to the AI.
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A number of research studies have shown that coffee helps to protect against breast cancer. A new study led by Lund University, has confirmed that coffee inhibits the growth of tumours and reduces the risk of recurrence in women who have been diagnosed with breast cancer and treated with the drug tamoxifen.
Article is here:
http://www.nhs.uk/news/2015/04April/Pages/Coffee-c...
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DianeNYS, sorry for the delay in responding. First of all Congratulations on loosing 23 lbs.!!! That is really hard to do. I am also short and definitely "small-boned". I gained about 10 lbs during chemo, the steroids are something, I could have eaten my shoe.
About the RA diet, it looks like you are eating well already. What I did after my RA diagnosis is to stop eating gluten, sugar, meat, fry foods, nightshades veggies, peanuts. When I say no sugar, I mean no spaghetti sauce, no salad dressing, nothing suspected of containing sugar. I even cut regular rice also the dairy. I consumed lots of fish, salmon, sardines and was very liberal with the oil in my salads. I did not consume any artificial sweeteners. I did that for couple months, I felt the improvement in the energy levels. You would think I lost weight. No, I actually gained couple pounds.
Anyway, I slowly started adding a few items. I found out that gluten and meat definitely do not agree with me. I can occasionally have sugar but if I am going to have it, it better be worth it. I eat food that do not contain gluten naturally instead of buying gluten-free, except for bread. I also take Fish oil and Borage oil, which actually makes my skin smoother. About the food it is pretty much trial and error. Also I firmly believe that in addition to diet, exercise and sleep are very important. Believe me, I have my struggles with sleep, but it comes in cycles.
I will be checking to see when you hit your goal of 25 lbs. yes, every ounce counts. I have struggled with weight issues when I was younger. I would start a new diet every Monday. Finally, I feel in control, funny thing is that do not feel hungry or deprived in any way. However, it did take a while to change my ways, it is a slow process but if you stick to it, you can reach your goals.
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Thanks for the information, islandmom...I guess that RA diet is more than I might be able to do. I do cut out all sugars (and, yeah, even the hidden ones), but do have Splenda and Stevia as my sweeteners of choice, though I try really hard not to overdo them. I don't have potatoes, rice, corn, starches, grains or gluten (and stay away from processed "gluten-free" foods, as well as all processed foods), or any type of sugar-free protein bars, candies, etc. I make my own chocolates with Coconut Oil, all-natural Almond or Peanut Butter--both sugar-free--Ghirardelli cocoa powder, and Splenda (in the form of sugar-free DaVinci or Torami flavored syrups). Though I don't really have many "treats" or even eat them every day, I do make them all myself so I know what is in them.
I do eat meats, poultry, eggs and full-fat dairy products (the Atkins diet doesn't discourage any of that unless it causes digestion, health or weight-loss problems). I don't think I could actually live without any of that
Sometimes I do wonder if the amount of dairy or Splenda or Stevia have anything to do with my slowed-down weight loss since the beginning of this year (I'd lost the bulk of my weight from July 1st 2014 to the end of December 2014), but I scaled-down as best as I could without feeling deprived and wanting to give it all up. My weight loss had slowed to about 1/2 lb. per month since January, where it had been much better than that in the 6 months prior. I also have cut out the nightshade vegetables (tomatoes, peppers, eggplant, parsnips, etc.) since I've read that they can contribute to inflammation, and I have Arthritis. I hope I don't have to cut out peanut butter--already don't eat peanuts, though--because I do like a little of that with my homemade chocolates...Today I weighed in and am down to 127.0
So, I've gone from bouncing around since April 3rd from 127.6 to 128.8, to a constant downward trend since I started on the Tamoxifen 10 days ago on April 15th. In fact, ever since this January losing the weight has been like pulling teeth, the torture of up and down and taking weeks before settling on a "new low," and then the torture would begin again. This is the first time since then that the trend has been staying at the new low, or going downward, each time I've weighed in. I'm not sure if my extra-due diligence with my diet and exercise because of my fears of this med has made this happen, or if this is just how Tamoxifen works for me. I am very much looking forward to letting you know when I reach 125 lbs. 
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DianeNYS, I just wanted to say that is very normal that your weight loss has slowed down. Your body is just trying to protect you. You will probably loose by the ounce instead of the pound. I know we all want to get there soon but slow is better, that way it will be easier to maintain.
About the diet I have added eggs and limited dairy and even some sugar on occasion, so it is not as strict. I never heard anyone make their own chocolate, I am impressed!
I used to get lots of leg and foot cramps early on. The magnesium helped a lot. I still get foot cramps occasionally, but I use a heating pad and they go away, immediately.
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The chocolate is really easy, islandmom--sometimes I add some heavy whipping cream to the recipe to make more of a "milk chocolate" taste and feel to it. You just stir up the ingredients and pour in silicone molds and freeze till firm; depending on the size molds you use, it may take an hour or just a little more than that for them to get firm. Pop them out and store in a plastic container in the freezer for keeping them hard, or the fridge for them to be softer. Yummy! I make about 30 little chocolates at one time and they last a couple of months for me...
I bought The Vitamin Shoppe's "Calm Zone Magnesium" powder yesterday and had my first dose of it (using one teaspoon of it; they suggest starting with that and working your way up to 3 teaspoons if you need to) last night before bed. I did sleep well, the cramps were vaguely there when I felt them but didn't wake me up. And though I've had "ghosts" of cramps in my lower legs and right foot, there has been nothing terrible. It also helped me be "regular" today, so there's that, too
It tastes like Raspberry Lemonade, and is supposed to be like a generic form of "Natural Calm Magnesium Powder" or something like that (they sold that, too, but their own version was a much better price, and on sale). I'll keep using it every night for awhile and see how it works. I have had problems with leg and foot cramps since before starting the Tamoxifen, but the problems have gotten worse since starting the med; I hope this does the trick for me, too...0 -
Loral - I saw that news too the other day and it made me smile. Finally the multiple cups of coffee I drink a day may be good for something) only issue is that where I come from there is a running joke about sweedish scientists 0 -
And AF is back after 9 months of no show. Curious to see how long it stay here for and if tamoxifen will have any effect on it. So I am assuming that the hot flashes and night sweats were due to the chemopause and not tamoxifen as I have gone two weeks with no hot flashes and night sweats. I still keep having some bone pain on my left leg though (that's definitely from tamoxifen).
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amylsp - mine told me the same thing if I get it back he will stop them and I'm on tamox
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read the last few pages to catch up....so many similarities. Just lost 10lbs doing 10 day detox by mark Hyman, essentially no sugar, dairy carbs. It has been over a month and although tough I feel so much more in control. No more swings based on food. But always a struggle. And worried about of impact of tamox. Have to do like everyone else...commit to exercise.
Was so Anxious about starting tamoxifen. Had hernia surgery a week after I finished radiation and had to wait to start tamox. Taking at night, had some restless nights, dreams and hot but no sweating yet!! My biggest issue is ITCHING. At first I didn't think it was related, but last night my hands were crazy itchy and decided I better look it up. Looks like some people have this SE. Will call doc tomorrow.
I think someone said it earlier, but the surgery and radiation seemed much more manageable because they seemed short lived. This 5+ year drug course with all kinds of ups and downs is a little disconcerting.
Anyone else dealing with itchy skin?
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Hello everyone.
Gtlucky- I toohad itchy skin after beginning Tamoxifen. It did pass after about a month, but I was extremely itchy for that brief period. Please let us know what your MO says, as I am curious to hear his/her take on it
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Gtlucky- I am so lucky that the current plan is 10 years for me? Urrgghh and it is disconcerting about the SEs that may go along with this. No itchy skin for me at this time. I would be interested in what detox you are using. I plan to try one in July timeframe after giving my body enough time to recover.
Windgirl/Lois -- what is AF? Our monthly's? Love the article on coffee, finally one of my bad habits may pay off...big smile.
I have reached 4.5 weeks on Tamoxifen. Since Friday, I believe I am experiencing experiencing what I believe is dizziness -- although it is not vertigo -- more like a fuzzy/zapping/tingly feeling that occurs a few times a day but doesn't last long. No issue with vision and not constant. I searched this thread and found a few post on the SE of dizziness with Tamoxifen. However, didn't find any input on how long it took to go away or if anyone had just "fuzzy/zapping/tingling" instead of outright vertigo/dizziness. Or if the dizziness falls into the what I am describing. Other than this new SE I am managing the insominia and the fatigue has improved a lot!
I also understand from this thread that many of the SEs will "go" away after time/adjustment and most occur within the first 3 months. Did I get that right?
Thanks all in advance for any input.
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Ladyb. Yes AF (aunt flow) is our monthly visit from mother nature.
My pains and aches lasted for about two months and I had no pain for a few more months then I started having burning pain on my left femur. I guess everyone is different.
I had that fuzzy head feeling even before my diagnosis and before being on tamoxifen.
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Hello Ladies - I started Tamoxifen in Sept 2012 and didn't have many side effects at first. Had a slight dry skin rash which went away, had 4-5 hot flashes an hour and not sleeping well. I was constantly crying, miserable and wondered how I was going to get through life like this. I thought the HF's were worse from the Tamoxifen but now believe it was from having a total hysterectomy and my body reacting to the sudden shock of surgical menopause since the HF's have calmed down a lot. I didn't gain any weight the first year but had trouble sleeping and then the weight started coming on. Only gained around 15 lbs but enough that I had to buy new clothes. Around the 2nd year I started gradually having joint aches and muscle aches that are getting increasingly worse. My toe joints ache, feet, ankles, knees, wrists, finger joints and muscle aches that come and go. Of course my first worry was my BC being back and in my bones. With all the changes my body has gone through in the past 3 years, I am not sure what is going on, what is normal, what isn't. I am seeing my Oncologist for another 6 mo follow up soon and will mention this to her. I am sorry to hear of so many women taking Tamoxifen and having all these issues.
Can anyone tell me if there is anything they have tried that has worked and found some relief? I'm a little worried because my Oncologist mentioned possibly keeping me on Tamoxifen for 10 years, depending on what my Onconotype score came back as. I am an active person and am only 46 years old and feel like I am 80 at times.
Thank you for info you can offer!
Blessings,
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