35 and I hate my life thanks to Tamoxifen
I'm 35 yrs. old, and I had Stage 1 IDC, Less than a cm, Grade 1, 0/5 Nodes, ER/PR+, BRCA1&2 Negative, Oncotype Score 9. Lumpectomy, Radiation, Tamoxifen.
I have been on tamoxifen for 4 years now, and I am miserable. Here is the list of side effects I have from tamoxifen: Depression, Mood swings, Bone loss (is known to happen in premenopausal women), Fatigue, Body aches, Ovarian cysts, Pelvic pain and pressure, Vaginal dryness, Vaginal discharge, No sex drive, Bloating, Constipation, 30lb weight gain, Inability to lose weight no matter what I do. I have also had to have biopsies of my uterus done because of thickening.
I don't know if I can take another year of feeling like this and nobody cares that my life has been a living hell. My relationship with my husband and my family has suffered and I have lost pretty much all of my self esteem. I don't know what to do.
UPDATE 2016: I've gotten a couple of emails recently because of this thread that I started back in 2010, and I thought I would update. I stopped taking Tamoxifen not long after I started this thread. I stopped at 4 years instead of 5, because I was truly miserable, but only after discussing with a surgeon who is an expert in the field. It is 6 years later, and I am about to celebrate being a 10 YEAR SURVIVOR! And for those of you wondering, yes, you can lose the weight once you stop the drug. I'm not here to encourage anyone to stop the drug earlier than 5 years, I'm just telling you what I did after careful consideration and research. Treatment is not a one size fits all, and there are no guarantees with anything that we do. I felt that with my diagnosis, that it wasn't out of the question to stop taking it, and an expert agreed with me. Best of luck to all of you who are still fighting the good fight!
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nikki1974,
I am with you on the tamox. I posted on another thread about how I want to get off the tamox and see if there are other alternatives.... I find the personality change I have is the worst part. I can hear myself flipping out about something I would not normally worry about. I am also finding my family is finding me difficult to be around too.
I am also with you on the weight gain too. I have bought limited summer clothes b/c I am hoping that I will have lost some of the extra pounds I have put on. I also have my hair growing in from chemo so between being 15 pounds heavier than b/f BC and the brutal hair I have got going on I am like you not a happy camper.
I wish I had some advice to offer you other than you are not alone and I understand how you are feeling. I see oncology in 2 weeks. I can let you know if we do have any other options out there beside tamox.
If anyone has any insight on options for us that would be great.....
Take Care,
Chalex
Diagnosis: Aug/09, IDC, Stage 2(b), 7 cm, grade 3, 0/15 nodes, ER+/PR+ HER+
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nikki1974,
I am with you on the tamox. I posted on another thread about how I want to get off the tamox and see if there are other alternatives.... I find the personality change I have is the worst part. I can hear myself flipping out about something I would not normally worry about. I am also finding my family is finding me difficult to be around too.
I am also with you on the weight gain too. I have bought limited summer clothes b/c I am hoping that I will have lost some of the extra pounds I have put on. I also have my hair growing in from chemo so between being 15 pounds heavier than b/f BC and the brutal hair I have got going on I am like you not a happy camper.
I wish I had some advice to offer you other than you are not alone and I understand how you are feeling. I see oncology in 2 weeks. I can let you know if we do have any other options out there beside tamox.
If anyone has any insight on options for us that would be great.....
Take Care,
Chalex
Diagnosis: Aug/09, IDC, Stage 2(b), 7 cm, grade 3, 0/15 nodes, ER+/PR+ HER+
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Sorry, I sent this twice..... My bad.
Chalex
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Fours years is great. You don't have much longer to go.
If you REALLY hate it then quit taking it.
My sense is that you're griping more than actually hating or you would have quit already!
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I hear you! I was just saying to my friend that I hate how I feel being on Tamoxifen. I have every symptom you listed, plus cramps in my feet and sometimes calves. I also have constant fatigue. I've only been on Tamoxifen for 10 months, but I'm scared to quit it, as much as I hate how I'm feeling. roseg, I respectfully have to disagree with your last sentence. I HATE how I feel on this drug, yet I'm terrfied to quit. I know I have the choice to quit, but do I want to take that chance?
I'm glad to see you've made it four years. My oncologist says the longer I can stay on it, the better the benefit. I'm hoping to make it 2 years.
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I don't call a list of over 13 side effects for the past 4 years just griping. I do REALLY hate it, but I don't know what else to do because I'm scared. I'm not looking for anyone to tell me what to do, I'm just having a bad day and wanted to vent to some people who I thought might understand.
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vent away! I also think, for me, that I'm dealing with post traumatic stress from everything since I was first diagnosed. The mood swings and depression from Tamoxifen certainly do not make life easier. There are a lot of us on these boards who completely understand, even if it's just the need to vent for awhile.
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Hey nikki1974 - I'm with you... I hate it too! I've been on for 1 year... Most days I feel like an ogre! My oncologist said tamox was 1/2 my survivability... Anyone hear that statistic??
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Hello everyone!
I hate taking tamoxifen too, I especially hate the fact that I cannot lose the chemo-weight! I have been on it for 5 months now and am already looking foward to the day I stop taking it...
Nikki1974: Can't you stop taking tamoxifen after 4 years? I recall my onc. telling that if I really wanted to get pregnant I could stop taking it after 2 years.
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Hi..Im sorry you are going through this. In 2002 I had to be on tamoxifen and read all about the side effects. I thought no problem, I could handle it...but I couldn't. I spoke to my gyno, and he suggested paxil, mainly to control the night sweats. I never heard of taking paxil to control the side effects of tamoxifen. It WORKED for me. I was so greatful to my dr.
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None of my doctors have ever suggested not taking it for the full 5 years. They just blow off all the problems I'm having and tell me to stick with it. I don't think they care about my quality of life at all. I contacted the Cancer Treatment Centers of America to ask some advice, and they suggested that I see a Naturopathic Physician to try and find natural ways to help prevent cancer also. They are of the belief that you should not just do traditional treatments, but also learn ways of taking care of your body to help keep it strong and to fight off disease. Since I've had cancer, and I've also had Melanoma, not ONE doctor has talked to me about nutrition, excersize, vitamins/supplements. I eat healthy and workout regularly doing weightlifting and cardio, but I think there's alot more I can learn about taking care of myself. I was in the best shape of anyone I knew when I found out I had cancer, and now I'm 30lbs heavier and have cellulite.
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I've been on Remeron since right after I started Tamoxifen. It's one of the only anti-depressants that you can take with tamox. It helps, but not completely. Before I started it, I couldn't get out of bed and I would cry uncontrollably. I thought I was going crazy before they finally put me on remeron.....which is another story itself. I'm kind of tired of drug after drug. What about some less toxic ways of taking care of ourselves?
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Hi, Nikki:
So sorry you're struggling with the tamoxifen. I have a good friend who said it made her NUTS. She was diagnosed last year and had a unilateral mx - she quit taking it after 4-5 months. I've been taking it since February, and so far it hasn't really been that bad, but I do have my moments.Sending good thoughts and hugs your way - hang in there, girl!!!
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nikki1974- Have you tried accupuncture? I've been seeing one for about six weeks-mainly to help me with the side effects of Tamoxifen. It's helped a little bet as far as that goes. But I really really just look forward to having that one hour a week, alone with music, laying there in the dark so I can meditate/relax/think away the possibility of a recurrance/whatever! It's my own way of relaxing, plus I'm hoping the accupuncture is doing it's job.
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Hi Nikki, so sorry to hear your sadness. I was on Tamoxifen for only a short while (months), until I had a complex cyst on one ovary. Both ovaries were removed and I was put on Arimidex (I was on this for a year), which made me feel like 90 - joint paint, achy and hard to move around. I'm now on Aromisen, only for a week now, so we'll see.
It's hard to keep switching pills and I feel like a guinea pig.
I wish you better days, I hope you get this figured out. You're not too far from stopping the drug, talk to different Dr.s and this discussion board is powerful, lots of help here for you.
Sandy
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Nikki: Please know that you are being heard. So sorry to hear that the SE's are really getting to you. Please feel free to vent away and get it all out. I am older than you and have only been on Tamox for 10 months and I have spent the last two weeks struugling with what is the best decision....tamox or not. In my mind if I were younger I would try everything I could to hang in there and finish the 5 years however I also understand your dilema...scared to continue taking it and scared to not take it. You mentioned that you are on an anti depressant. Have you tried effoxor. It is compatible with Tamoxifen and I know there are a lot of ladies on here that have had success with it. Have you checked out the Bottle of Tamoxifen thread on here. Please check it out. there is a lot fo good advice on there.
Good luck to you sweetie!
Big Hugs
Beth P
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Hi Nikki - So sorry you're struggling with the Tamoxifen. I was on it for one year before finding out it didn't do what it was suppose to do and the cancer spread to my lymph nodes. I had more surgery and then 8 rounds of chemo which pushed me into post-menopause. Since the Tamoxifen didn't work for me, I'm now on Arimidex and took my first tablet this morning. I have to admit, I am apprehensive as to its side effects. While on the Tamoxifen, I had night sweats, uterine thickening, charlie horses in my calves and my toes would get stiff. I didn't have any weight gain; but, was very fatigued after a days work and felt like I was aging from the inside out. Through it all though, I'm grateful to wake up each morning on this side of heaven. And you, you've tolerated 4 years...that's great!! I believe we've earned the right to vent, especially since no one who has experienced our trauma really understands what we're feeling. It's frightening, especially the unknown. Best of luck to you with your decision making. Feel better. xo, Dona
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NIkki - I don't know where I heard this phrase, Alanon I think lol But it says "Take what you need and leave the rest." I know there have been a few times I have gotten on here just so I could go off about whatever I was feeling at the time. It really does help to vent! It has to be much better than keeping it inside
CJCC Great advice! I have heard of quite a few women having to take something to counteract the lousy side effects of Tamox. I'll have to ask about this!
I have only been on it for about 3 months. Was every once in a while feeling like Why go on with this life, nothing to live for blah blah. Then I ran out of it the end of April, then had to take a biz trip to OK after that so forgot to refill. I've been the whole month of May without it and life all of a sudden worth living LOL it's crazy!
There is a bottle waiting for me right now at the pharmacy that I need to pick up sometime soon. *SIGH*
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Been on tamoxifen since 2/07, and really have not had bad side effects other than the huge weight gain that I simply cannot lose. I was chemo-induced into early menopause, and the tamoxifen helps with the estrogen (being EST+, it is a necessity). My oncologist does not want me on tamoxifen any longer, as we're showing post-menopausal hormone levels for a few years now (period ended first day of taxol 10/2006). My problem now is INCREASED level of estradiol (a worry for me) from 16.4 to 100. We have retested (today) to see if it's just a lab error. Of course, estrogen is a concern for me, and I will take the tamoxifen as long as is necessary. We do plan to switch me to an aromatase inhibitor probably this year (lots of issues concerning that though). I HEAR ya on venting though...we all have a right to do that! Remember, it's only temporary, and a necessary evil in our fight. GOOD LUCK~~enjoy what you can. ~juli
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I'm not a Doctor, so don't take this as advice. But if you absolutely can't tolerate tamoxifen, then you need to press your oncologist for alternatives. I recently heard about a tamoxifen variant that has been around for quite a while called toremifene. I found this article saying it is equally effective as tamoxifen.
http://annonc.oxfordjournals.org/content/15/12/1749.full
Apparently it costs more, but has different side effects, possibly less estrogenic to the uterus than tamoxifen. Perhaps print out the article and take it to your oncologist to discuss. It sounds terrible the way it is making you suffer.
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Toremifene is only for post-menopausal women. Thanks for trying though:) I appreciate all of the responses and advice from all of you. I don't normally come on here and talk because I just want to feel normal and not think about breast cancer all the time, but sometimes you just have to let it out and hope that the people you're talking to will understand and not think you're just being a complainer. Lord knows my family doesn't have a clue as to what I'm really going through.
I'm going to figure out a way to get through this with or without tamoxifen. I'm waiting to hear back from a doctor that I email once in a while from the Susan Love Research Foundation. She's at a conference right now and told me she would get back to me next week, and that I have some options. So I guess I'll see what she has to say.
Thanks again to all of you for writing. I hate that alot of you are going through the same things as me, but it does sort of comfort me knowing that I'm not alone and I'm not crazy!
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Another article, commenting that it could be considered an alternative to tamoxifen where side effects need to be mitigated.
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I would also suggest that you try acupuncture. I started a few weeks ago after months of terrible hot flashes, and it has really helped. It can help with many of the issues that you have mentioned. Is there an acupuncturist or school in your area?
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Same here every symtom you mentioned I have also. Was on tamoxifen for 15 mos now on armidex that is even worse. I can't concetrate at all at work. I don't now what to do. I stopped taking tamox for 2 mos and I started to feel better, but my onco insists I take this. Can we have our ovaries removed and then not have to take any estrogen supressors??? I feel you pain. But what do we do???
Tina
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Same here every symptom you mentioned I have also. Was on tamoxifen for 15 mos now on armidex that is even worse. I can't concetrate at all at work. I don't now what to do. I stopped taking tamox for 2 mos and I started to feel better, but my onco insists I take this. Can we have our ovaries removed and then not have to take any estrogen supressors??? I feel you pain. But what do we do???
Tina
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Having your ovaries removed would be worse in my opinion. You can stop taking a pill, but you can't put your ovaries back if the side effects are too much. It is also proven that women who have their ovaries removed before a certain age, have a shorter life span as well as a higher risk of dementia, heart problems, etc... I'm keeping my ovaries....I don't think that is a solution. I wish these doctors would help us try to balance our hormones and vitamin levels...there's a reason we got cancer in the first place and I feel like we are just putting a band-aid on the problem and not trying to figure out a way to turn our bodies into disease fighting machines. I'm not against conventional medicine, I've obviously used it, but I do feel there is more to treating cancer than what we've been offered. I think we're going to start seeing more and more people adding complementary therapies in addition to conventional medicine. Even the Cancer Treatment Centers of America are doing that.
Also, a new study came out that showed women who gained weight after bc had lower survival rates. So, now the tamoxifen has actually caused me to put into that group because I've gained 30lbs. despite a rigorous excersize program and healthy diet. Sometimes none of this makes any sense to me.
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Hi nikki, very sorry to hear what you are going through. Ive been on Tamox for about 5 months and it aint easy. As well as other SE, I too have gained weight, but not gone over what I was Pre chemo. I lost some on Chemo and then gained it back, but Ive actually lost 2 Kilos in the last month or so, since I have increased excercise as well as cut down FURTHER on any food baddies and generally trying to be more moderate without being brutal about it. Its a tough call dealing with all this. I would agree with the posts that encourage you, if you can possibly hold on, do so. I know a lot of the time its "hobson's choice" (which is really no choice at all) and simply means choosing between the lesser of 2 evils.
Hope you are feeling better soon! "It is also proven that women who have their ovaries removed before a certain age, have a shorter life span as well as a higher risk of dementia, heart problems, etc..."
Do you know what that age is, or can you point me to this documentation as Id love to be able to look at it further?
Musical
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Hi Nikki!
First, I have to tell you, I have a French Bulldog too! Fabio is like my 3rd child. He has helped me through so much of this!
I finished chemo on 2/4, and just had my implant exchange surgery. Last week my onc gave me the prescription for tamoxifen. I gained about 30 lbs from steroids/chemo, so I am terrified to start it. I decided I will start June 1. I tell myself that I will give it a shot. If the side effects are too much . . . well, I give myself permission to quit.
I have to have a hysterectomy in the fall (totally unrelated to cancer! evidently having 2 kids has taken its toll on my insides!). I have the option to have my ovaries removed, and I seriously considered it. But I am only 45 and that is a very permanent path. I haven't had a period since my first chemo. Maybe I am in permanent chemopause.
I have to say, the mastectomy, the chemo, all were pretty easy decisions. This tamoxifen/oophorectomy/arimidex thing has been much more difficult. My tumor was only 50% ER +. I don't know how much benefit this is going to give me. That's why I say I will give the tamoxifen a shot and take it from there. NEVER EVER in my life have I ever done/taken something that I knew would make me gain weight! hahaha
If I were you, I would point blank ask your doctor if you can quit. This is not an exact science. 5 years is a guideline. They do not know for sure how long the drug needs to be taken. New guidelines recommend an AI after Tamoxifen, but you are only 35. You need to do what's right for you. Maybe even a break from it?
Best of luck to all!
Laura
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I was told the thing about ovary removal shortening your life span by a Dr. from the Susan Love Research Foundation. Her name is Dr. Dixie Mills. I have also read about it online, but don't remember the exact page....I'm sure you can google it.
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Nikki.....
Having the estrogen sucked out of your system is no fun, but you are at the 80% there point! The reason for the five years to make sure that you don't give any of the nasties a chance to grow elsewhere in your body.
I have looked at the "overweight" part of the studies into exercise and recurrence. The data shows that exercise gives overweight women the same survival benefit as women with a BMI of less than 25. It just takes more exercise. (I checked this finding with my oncologist and he agreed.) This is not what is reported in the press, but that is what the study findings show. (Michelle Holmes JAMA, Physical Activity and Survival After Breast Cancer Diagnosis, Table 3, June 2005).
I am saying this so you don't sweat the overweight piece if you are getting exercise. Being overweight changes the "therapeutic dose" from 12 metabolic units per week to 16, or in terms we can understand, from 3 to 5 hours of brisk walking.
If you take the longer view, I have to believe that you will be just fine. It just means sucking it up and dealing with this for another year. In my case, I was seriously underestimating the relative benefit of chemo vs Arimidex. So glad my oncologist straightened me out.
Because AIs turn out to be at least as important as chemo for my being here in 20 years.
Good luck.
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