Bottle o Tamoxifen
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Denise-----I took tamox for 5 years and had minimal SEs, mainly hot flashes. It generally is tolerated well by most people--(you just hear the negatives here becuase this is where people come for support, those are are doing well don't usually post much) with the main SE being hot flashes. It does have the potential for serious SEs (blood clots and endometrial cancer, but those risks are very very low, less than 1%, and happen more often in women who are sedentary or who smoke). It's a good idea to have a yearly transvaginal US to monitor both the uterine lining and the ovaries, and to take a daily baby aspirin (81 mg) IF OK with your own physician.
anne
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Denise1201: my bottle of damoxifen (damned if you do & damned if you don't) sat in my drawar for 8 months before I took one...I'm only 2+ weeks into it. It's scary stuff, but then so is cancer.I certainly understand your dilemma. I'm trying it & will see if it's something I can live with or not. I figure I can always stop taking it if I decide to. That made me feel a little better.
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Hi All!
Denise - I too hesitated and investigated other options before taking Tamoxifen. In the end I just started taking it and have been dealing with minimal side effects. It gets better everyday and it's bearable. If the side effects are too much for you then discuss other options with your oncologist.
Now after saying that I have a question about stopping Tamoxifen!
I met with my PS on Friday and I am all set to have TE put in on Sept 9.
I asked him about stopping Tamoxifen before surgery and he wasn't sure but would look into it. I read over the handout he gave me - which included a 3 page listing of drugs to stop before surgery - but Tamoxifen isn't on there. In the meantime I've got a call in to my ONC for his advice.
For those of you that have had surgery while on Tamoxifen can you tell me when you stopped and started it?
Thanks!
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Hi Gals! Denise, I think we ALL can honestly say we were just afraid to take that first pill! But over 7 months have gone by for me, & I am so GLAD I started taking it! It is sold at a much better price than either Femara or Arimidex! And I think the side effects kind of come & go! I don't have the "hot flashes".....I just get "warm"... in spurts!......And I also find that if I take a Tylenol PM or one of those type at night, I sleep better, & not dream so much!
I wanted to ask you, did your Doctor do an Oncotype test on you, to tell you that you didn't need chemo? You probably know, that the Tamoxifen IS a type of chemo drug, and works by blocking any of your estrogen from feeding cancer cells. That is why Tamoxifen is sort of "good for you" because it helps your bones! So good luck, & maybe just try it! My friend took it for 5 years after her mastectomy, & that was 11 years ago!
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DiDel - What flavor body choice shots are you taking? I got some on Kate33's recommendation too, but I only took about 5 of them - they taste TERRIBLE!
Denise1201 - I think if you read all 277 pages of this thread you'd be amazed at how many people had a hard time taking that first pill. But most of us did it and we're managing. I've found, 4 months into it, that I have warm waves, especially at night, and some increased joint trouble, and a tiny bit of nausea, but that's it. I wish I could say that I didn't immediately think "blood clot" every time one of my legs hurts, but so far it's just my imagination.
MarieK - Some women here have stopped Tamoxifen for surgery and some haven't. I specifically asked my PS about it before my mx and she said it wasn't necessary to stop. I'm guessing it all just depends on your particular stats and the preference of the surgeon. It seems like those who have mentioned stopping have said a period of about two weeks, but that's just my unreliable memory.
Tarry1 - It's weird, it seems like most say they either gain or lose on T (as opposed to maintaining a steady weight) and I'm so curious why there are such opposite results. Has anyone investigated that?
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Chevyboy: You may already know this, but Tylenol PM has the same ingredient as benadryl and it is not advised to take benadryl with tamoxifen.
MarieK: I started my tamoxifen last Oct and did not stop taking it for any of my surgeries(Hyst/ooph,exchange,nips) that I have had since then. I was advised to stop my Vit E 2 weeks before and after due to increased chances of bleeding. I don't know if you take Vit E or not but it is for my hot flashes/flushes.
TCK
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Chevyboy
Sorry to tell you this but I think Tylenol PM is contradicted with Tamoxifen as is contains same stuff ad Benadryl, maybe someone will read that knows more about this.
Welga0 -
Denise, My onco said that if you have taken birth control pills in your life with no negative side effects, the scary ones listed with Tamoxifen probably won't happen. I too skipped chemo and rads and went from mx to tamox. I think the worst side effects are waking up with hot flashes....which I think makes me tired.....and then then I don't want to exercize so I'm gaining weight...., headaches and constipation if I'm not careful.
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Tory I got the Orange Sunshine it was pretty tasty to me. I also bought at the Vitamin Shoppe near me this kind called New WHey Protein Shots in grape and orange. They are much much thicker like syrup and have to be dilluted. I mix with Club Soda, and I really like that all natural 42g of protein and i think like 7 calories.
I had a hard time finding the Orange Body Choice and Fruit punch doesn't appeal so I thought I'd try these.
Di
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Yeah, fruit punch is what I had and they're just awful. My husband finished them off after I gave up. I had to hold my nose to drink them! After I asked I realized that I didn't remember seeing more than one flavor at Costco, so it's not like I had a choice. I'll check out the other ones, though. Mixing with club soda is appealing too. Thanks!
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Hot flashes, night sweats, weight gain, leg cramps and back spasms. It is really bad. Not as bad as chemo but definitely cramping my lifestyle. My sweating is so bad that I can't wear makeup and my newly regrown hair is always wet and messed up. I don't know if I can go another 4.5 years. Has anyone stopped Tamoxifen and not had a recurrence? My onc says with my type of cancer my chance of survival is much greater with tamox. But there is the quality of life issue. Advice Please......
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After being so tired in the afternoon since starting Tamox I decided to take a break and the tireness is gone. I feel great. I can't handle being at work and getting that tired.
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Blondie45 I have lost a total of 17 pounds and it has been 3 1/2 months on the Tamox and while the first few pounds came off rather quickly the rest has been SLOW!!!!! I am averaging about 1 pound every 2 weeks.....now that is frustrating for sure.......I started to walk every morning ( 4-6 days )and put myself 1st instead of my family......I do overall feel great after keeping with it, so I highly recommend it.......
June
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Well....today is my day to get on board...received my bottle of Tamox an hour ago. onc said that I might gain weight...believe me...i can shed a few pounds...not only a few...a lot...have anyone tried taking one pill in the morning and one at night...to help with the fatigue and night sweat.
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Jane, how far do you walk? I know I need to get my exercize routine going again, and maybe it will help. That is fantastic!
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bcincolorad, I walk at least 3 miles and sometimes 4 if the time is on my side......I just heard so many horror stories of weight gain and I have already gained enough due to the stress of this hell........so I am trying to watch what I eat, but not diet as I can never follow any type of diet.......and I try to walk and or bike 4-5 times a week........I hope I can continue this come this winter as I walk early in the morning and it is getting so much darker earlier and I am finding it hard to squeeze in 3 miles.......GOOD LUCK!!!!
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Hello everyone,
I have been on Tamoxifen for 8 months and I was afraid of the weight gain especially because I had gaines 10 pounds during chemo. So I started working out like crazy. Good news! I lost 8 pounds! So losing weight is possible while on Tamoxifen. The one thing that was hard was that it took 4 months to lose those 8 pounds... so it seems that losing weight while on Tamoxifen is harder. But losing weight is definitely possible.
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The above posted article says not to take aspirin unless your physician says it is okay. I have asked mine and he said it was okay. How many of you take aspirin?
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blondie45, I just saw my family doctor and he asked me if the oncologist recommended that I take an aspirn daily? I told him no and he said that he was surprised that they didn't prescribe some sort of blood thinner, since I have mobility issues. So I was wondering as well if other people are taking aspirin or any type of blood thinners.
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Hi girlfriends!.....I thank you so much for telling me about Tylenol PM, having Benadryl in it! You are right! And I googled it, & found out the same information, that it DOES have "dyphenhydramine" in it, or something like that. ...So I was worried, & called the Oncologist, & she called back & said it shouldn't hurt, especially since I only take one at night....She said that was no problem....
You know, like all you gals, I just want to do what is "right!".....Man, I had the WORST cramp in my leg last night! It felt like it would just twist my leg off! Damn thing! I finally half fell out of bed on my feet, & tried to push my heel to the floor, & it finally "broke" & hit the floor with a thud! And being 1/2 asleep from the Tylenol PM, I was bumping into the walls, Ha! My Husband got such a cramp in his leg one morning, that when he jumped up, he passed out! Cold! So THOSE things are nothing to mess with. I remember when my Mom was so sick....She got cramps in both her legs, & I jumped on the bed, & tried massaging both her calves, to help her! She was just screaming! She even took Quinine? for those cramps!
And yes, I take a "Lo-dose" aspirin every morning with the Tamoxifen...along with all the vitamins...
And ME TOO! We walk a little, & then walk about a mile around the Colorado Mills, but I would LOVE to lose some weight too! We don't eat near as much as we used to, but I don't think losing weight is in the Tamoxifen "hand-book!"....
So it takes extra-effort! Good for you gals that can walk a lot! The Bursitis in my one knee, drives me crazy....But you know, at 73, I guess I am lucky to be in as good a shape as I am! Bye for now! Love you gals! xoxoxoxo
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I take a lo dose aspirin with my tamox every morning. I asked the onc and they said it was fine and since I was over 50 it was a good idea. I would love to lose weight but seem to be gaining. I exercise 5-6 nights a week and haven't changed my eating habits but it looks like I will have to get more agressive.
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Hello all,
I have been on Tamox for almost 11/2 years now and I am so miserable that I just said to heck with it!! I hurt all over, had absolutely no energy, My joints hurt so bad I could barely walk at times and I was so sad all the time. I cried constantly.I am 43 and pre-menopausal. I am now scared to death now that I am off of it. I've been off about 3 weeks and am starting to feel soo much better. I have not told my Onc yet and I know he will be very upset with me, but I have a 10 year old son, and I couldn't do anything with him. My quality of life had gotten so bad I just didn't know what else to do, Has anyone else had this happen? I know I should go back on it. My only other option is ovary suppression or removal then an A.I, but my OB seems to think that would be even harder on me. HELP!!! I don't know which way to go!!
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June, Wow! I'm impressed! You are an inspiration, that's for sure!
Susiered, My knees have been bothering me in the mornings lately (I'm 48) but seem to losen up later in the day as I move around. I would suggest you read the side effects on the hormonal therapy section of this site and then talk to your docs. You have to make the best decision for you. From what I can tell the possible SE of an AI are worse than those on Tamox.
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Hi Susiered....Yes, BC is right...I have talked to and read about the women on Arimidex & Femara....their side effects are usually a lot worse than ours are. The Tamoxifen is "supposed" to be "good" for our bone, because we still produce estrogen, but the Tamoxifen blocke it from going to any cancer cells. I know of so many women who do go off the other two, but not so much the Tamoxifen. But I know, we are all different. I know my one knee drives me nuts sometimes, but it is Bursitis, and it is only temporary.
Talk to your Oncologist.....Do you take the vitamin D-3, AND Glucosamine and Fish Oil w/ Omega 3? And Calcium & a Multi-vitamin? Try that maybe. Is it Arthritis that is bothering you?
I'm just sorry about your troubles, and not being able to do anything for your Son.....Let us know, Okay? xoxoxoxoxo
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HI Susiered ~ so sorry you are having trouble with the tamoxifen. I too had bad lower back pain and knee joint pain. TIRED yup......... oncologist took me off for 2 weeks, had a bone scan all is clear. I just started the tamoxifen back up. She said sometimes a break can resolve some of the side effects. I am too afraid to not take it right now. So I try again. We shall see. I am like you 43 years old.
Chevy ~ night 1 back on the tamoxitrain and the leg cramp happened in the middle of the night. OUCH!!!!!!!!!!
Hope everyone has a good day.
Alicia0 -
Hello all - I'm back on the boards again after a pretty lengthy absence - no excuse, other than I felt like I wanted to put all of the bc "behind" me and get on with my life. I've discovered that there's no such thing as putting bc behind me, it's more like a continuum, and I need to read the boards for info and answers! So, while I'm not happy to be a member of the club, I AM happy to be back with you all.
I've been on Tamox for 9 months, and still have a few SE's. I've lost 47 lbs since my PBM last November - and thought it just took a lot of calories to recuperate from surgery! I did start walking as soon as I could after surgeries, but dropped off during summer (kids out of school). Will be picking it back up next week.
I feel for you all who are dealing with SE's, all I can offer is that exercise does seem to help, along with good diet and "appropriate" meds for your situation. (I need to find a multi-vitamin that does not contain soy or soy lecithin - any ideas?) You are stronger than you imagine yourself to be.
Best wishes to you all,
E (Grakenmom)
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Susiered - Just read your post. I was diagnosed in 2008 at 41 and last June (2009) started on Tamoxifen. I'm pre-menopausal and was on Lupron during chemo - which put me in temporary menopause. After chemo I started on Tamoxifen. I came out of menopause almost immediately but was only getting a period every 6 months or so. About 10 months into Tamoxifen, I finished Herceptin (I was HER2 positive) and expected finally to start feeling better after 18 months, 2 surgeries, 25 radiations treatments, chemo and Herceptin for a year. Instead I was getting worse. terrible muscle aches set in and crushing fatigue. I was essentially disabled. Could not wash my hair my arms hurt so much and typing was almost impossible. I did my research and discovered that the muscles aches and the fatigue could be side effects of the Tamoxifen and that they tend to get worse over time. Saw my oncologist 4 weeks ago and told him I was not prepared to live like this. He agreed that the muscles aches were likely caused by the Tamoxifen but the fatigue might still be chemo related. He said that these side effects occur in a small subset of women and that generally pre-menopausal women have more trouble than post-menopausal women on Tamoxifen. He also told me that having been on Tamoxifen for a year, I had already received about 30-35% of the benefit I would get from Tamoxifen if I stayed on for 5 years. When we worked out all the risk, he said that going off of it was increasing my risk of a recurrence or metastasies by about 5% over my lifetime (so in my case over another 40 years.) We agreed that I would go off Tamoxifen for 3 months and see how I felt at the end of those 3 months. It is slow but I am feeling better. I could not function with that muscles pain. It was excruciating, debilatating, crushing. If I continue to feel better I am going to stay off the Tamoxifen. It's a very personal decision but I believe that a better quality of life is going to more than make up for a 5% increased risk spread over 40 years. I hope that you start to feel better soon and get some answers! Hang in there. You are not alone.
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P.S. Susiered - they tried to convince me to give up my ovaries as well so I could use the other drugs but I told them I wasn't giving up any body parts I didn't have to. Remember that the cancer docs are so entirely focused on the cancer that they sometimes lose sight of the person the cancer is in. Don't be afraid to talk to the oncologist - it's your body and your choice. I was terrified too until I actually talked to my oncologist and got the real numbers for the risk and benefit and now I'm a lot less scared. Fear is cancer's biggest weapon - this is what I know for sure. I was diagnosed at 18 with lymphoma and then 23 years later, at 41, with breast cancer - they are completely unrelated. I've spent more than half my life dealing with this disease. Fear is the thing that can get in the way of getting answers, asking questions, demanding a better solution, speaking up, fighting for what you need and deserve. The doctors are human. I challenged my doctors on everything and they almost always came back with a Plan B that both of us could live with and did not compromise my health. You do not have to let this disease take any more from you than it already has. You deserve to have a good quality of life and to be able to be active with your son. And know always that there is a big group of people out there fighting the same fight and that you are not alone in any of your feelings or fears. Good luck! Let us know how it goes. xo
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Hey Gals! I just love reading everything that you all say! And MMM.....You have really been "through it"...Haven't you? You really ARE an inspiration to all of us! And I like how you suggest we should all be "pro-active" in our own treatments! We HAVE to work with our Doctors, & if something isn't working, we let them know! Be sure and ask for the results or copies of all your tests, also! Just keep them in a special book, with your important info on surgeries, treatments, etc.
I really pushed for Tamoxifen, instead of the Femara & Arimidex, just because of the known side-effect issues. Then my Oncologist said we would "do the cyp2d6 test, to see if I AM metabolizing the drug." I was told I am an "Extensive Metabolizer".....So I am soooooo happy, that I can stick with this one.....Leg Cramps and all!
My left calf STILL hurts from that cramp the other night!
And one of you gals said "Warm Waves"....Yep, that just about nails it, Ha!
Good to hear from you gals! xoxoxoxoxo
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Leg cramps the firs time I was on Tamoxifen was 3 years ago and for only two months. I use to get leg cramps a lot. This time I don't, I have added magnesium citrate to my diet, and 9 dried prunes a day (contains potassium), so far no cramps (I'm about 3 months in using tamoxifen) maybe there is something there that is helping (I also take Omega 3). Hope this help
Welga
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