35 and I hate my life thanks to Tamoxifen
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Nikki-
Your dog is so cute as are you
I feel so bad for you with these drugs. I am on the precipice of bmx and, of course, not sure on chemo yet. In any event, I am only pretty sure I am going to be on one of these drugs for 5 years and as my weight is already very tough to deal with, I am not enthralled to hear about the weight gain. Oh girls....not much to look forward to!I thought I would start to check out some threads on tamoxifen and was also considering a hysterectomy, as at 40 I have never had kids and I do not want to. I don't know why removal of equipment I am not using could shorten my life or give heart problems. I will have to research that and thank you for bringing it to my attention.
If you can't go for regular massages, or accupuncture, perhaps using a rolling pin on all parts of your body that you can and also getting those large, foam, roller logs (that are used in physical therapy) to roll around on would help. What you are doing is forcing crap fluids out of your muscles. Furthermore, getting a yoga ball and both laying on it on your stomach and then extending backward across it on your back is going to help you stretch out.
I would do yoga and pilates. I understand pain and working through pain. A recumbent bike is also great as it keeps your body juices flowing in a low impact manner.
I always go right back to the scholarly Greeks. Work your muscles as much as you can.
I feel for you, dear. I really do and unfortunately I will be joining you soon-
Liz
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I am probably butting in where I should not since I am not taking tamoxifen. But I DID take tamoxifen as treatment after I was diagnosed as Stage lV. I was on it for 25 months before it stopped working. It shrunk my tumors 50% and kept me in remission for those two years. I had weight gain, went into instant menopause so had the night sweats, hot flashes and all that fun stuff. Also had a lot of terrible leg and toe cramps (so bad I would cry out and was unable to stand on my leg) and developed phlebitis a few months after starting it. I had joint and bone pain. Every month I would get a pamidronate infusion (this was pre zometa approval) and when they weighed me, the scale would be up at least 2 lbs. Was I grateful for the tamoxifen working? I suppose I was, but all I ever did was complain about the two or more pounds at the weigh in. I tired every diet and nothing worked. Then after 25 months they did scans and they showed that the cancer was progressing and also my CA 27/29 had gone up so they took me off tamoxifen and changed me to arimidex. Then I thought how stupid I had been worrying so much about the weight and remember crying when I went to the pharmacy to give them my new Rx and blubbering that the tamoxifen wasn't working any longer. I did not have tamoxifen as a preventative after my mastectomy in 1990 because my tumor was really not even a stage yet, it was so small and all of the 19 lymph nodes they tested were negative. It was discussed , but this was when they were still doing trials on tamoxifen and I was told it would only decrease my chances of recurrence by some small % so my onco decided I did not need it. To this day I think that if I had taken it as preventative for the recommended 5 years, my cancer might not have returned.....do not know this for a fact and will never know, but wish they would have told me to take it as I would have much rather taken it as preventative than as treatment for Stage lV. None of the side effects that go with hormonals or chemo are pleasant, but we take to keep the cancer from returning by blocking off our estrogen. I actually had a friend who stayed on tamoxifen for 8 years just because she was afraid to go off of it. I know SEs are worse for some that others and myself quit one chemo because I just could not tolerate it any longer, but I think I would try to hang in there on something that may prevent the cancer from coming back if you can stand it.....they actually gave me celebrex and several other pain meds for bone pain and I took a lot of antidepressants for the hot flashes without much success until they put me on one called Bellamine which did work. If you have already been on this four years, you are almost there. All I know is that I would take tamoxifen or any of the AIs again over chemo, but unfortunately they no longer work for me. The last one I tried and just went off of the beginning of May was Megace which was used pre-tamoxifen, but they quit using it to treat breast cancer since so many women refused to take it because of extreme weight gain...mostly is is used now as an appetite enhancer. I figured gaining weight was better than having my nails come off again and any more neuropathy.
Again, sorry to have butted in, but when I saw the thead read it and felt the need to post. I am not belittling the side effects of tamoxifen and I am sorry they are making your life miserable, but I just wanted to tell you it could be a lot worse. I wish all of you ladies the very best of luck and a long cancer-free life. Marybe
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Nikki, I have all the same stats as you and the same treatment, and I agree with keeping the ovaries. I've read a lot about how valuable they are to us, even after menopause, continuing to put out small amts. of beneficial hormones. Many books I've read say that they are beneficial up to the age of 65. (The Cleveland Clinic Guide to Menopause, and The Perfect Menopause by Dr. Henry Hess among them) With the more advanced cancers or being BRCA+, it's probably a whole different ballgame, then removing ovaries makes more sense.
Although, I'm older than you, I'm not post menopausal yet, and am on tamoxifen since Nov 2008. I initially gained weight on it in the first few months, but increased my exercise level until the weight started going back to normal, and have had no problem with weight gain since then. I have some mild joint aches, frequent vaginal discharge, Pelvic pressure when I go for many months with no period, hot flashes that get better and worse in cycles, and the most distressing of my symptoms is difficulty with libido and sexual response. I quit the tamoxifen once before for about 6 weeks to see if things improved, but got scared thinking what if I have a reoccurrence. I did have some improvement in the hot flashes and sexual response seemed to be getting better just as I was restarting on the tamox. I'm getting to the point where I may want to take another break from it for the same reason, but want to finish out at least 1 uninterrupted year (in mid Aug) and maybe get at least to the 2 year mark in November. My Onc has talked about wanting my ovaries to stop working so he can eventually switch me to Aromasin, but I've told him I don't want to do that. I just can't agree with taking all of the estrogen out of my body as being a good thing. I truly believe that there are natural things, such as diet, supplements, and exercise that help reduce risk and that should be compared in studies against the medications for early stage BC patients.
My Gyn just prescribed a testosterone gel to help with the whole libido/response problem, and my Onc said he had no objection to that, so I will see how that works out. I was also advised to try acupuncture, so am looking into that.
Nikki, congratulations for getting so far, 4 years on tamoxifen!
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Hi all... I need to jump on the band wagon of how much I hate Tamoxifen. I started taking it the beginning of May and everything was fine until I got my period and everything went downhill overnight from there. It was like my hormones went completely nuts. For the last week and a half, I have felt just AWFUL. I'm so fatigued I can barely get dressed in the morning and I'm wiped out for the rest of the day. My brain is so foggy, I can't think straight and I'm very down in dumps (which isn't normally like me at all). I almost feel like I'm sick but I'm not. I called my doctor's office, told the nurse how I felt and she said to go off of it for 3 weeks to see if it's not a virus. To be honest, I truly think it's the Tamoxifen. I have a VERY low tolerance to medications so I'm not really surprised that this is happening. The symptoms don't feel like a virus at all. When I go back on it and if I feel like this again, I'm going to stop the Tamoxifen. I can't live like this for 5 years. It's not worth it. I don't care what the doctor says. It's my body and my quality of life. I'll have to hope for the best if I stop taking it.
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That is exactly how my body responded - I started the tamox 1 month after I finished radiation treatments and it had been 3 months since my last chemo - so my body was going nuts - I originally started tamox in January - body responded badly - stopped it at the first of March - stayed off until June - doing good on it since. It has almost been a year. Don't totally give up on it - would give it a chance if I knew it was keeping my cancer from reoccurring.
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Hi Nikki,
This is my first post on this forum so Hi to everyone. I have been on tamoxifen for 18 months and certainly was not prepared for the side effects.
I think one of the big things to remember is that along with the drug, it is a known fact that women can suffer post traumatic stress disorder after breast cancer. Add hormone therapy into the mix (following surgery/radio/chemo) and its no wonder we all feel like we're going mad. Add too, that for the 'rest of the world' i.e. friends & family who haven't had cancer, we are fine now...
I suffered terrible depression last year so I understand how you feel. I did consider taking antidepressants but was scared after reading that so many of them inhibit the tamoxifen so it doesn't then work. I also felt I needed to get through this myself. I was so sick of doctors & drugs and surgery and after chemo, I needed to take charge of my body again. I am a writer so for me, writing stuff down, in a personal journal, blog etc. is a great way to vent. I found that talking & writing & time itself did help and whilst I still struggle sometimes, I feel more in control.
The weight issue is also a bugbear...even healthy eating & gentle exercise don't seem to budge the extra pounds but I do try and put it in perspective and remind myself that it is not the be all and end all. There doesn't seem to be a solution other than tamoxifen for pre menopausal women so to a degree, we just have to go with it. Whilst we're doing that, we need to find ways to help each other while we help ourselves. Don't put too much pressure on yourself. Our self esteem takes a huge knock with breast cancer so the last thing we need is depression & weight gain...but we must try to go through it. You have achieved 4 years of getting through, HUGE achievement and an inspiration to every woman reading your story. Be proud that you have got this far and are cancer free today. Have more faith in yourself because you are obviously a strong person and just don't realise the inner strength inside of you.
Make a plan - but one that has easy goals. Rather than aiming for 30lb weight loss, start slow and aim for 10. For some reason, tamoxifen seems to make it almost impossible to shift pounds so its an uphill struggle but don't give up! Try and go for long term goals. If you are feeling angry and depressed, write it down, stream of consciousness style. No-one needs to see it but you. Count down the next 12 months and look for ways to get through it. You are not alone, but you are a brave strong survivor who is still battling but can still beat it. Go girl.
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After my loss of estrogen I went from being wicked mean and hateful one minute to crying the next, to not caring if I got out of bed in the morning. My emotions were all over the place. My primary care doc prescribed celexa 10mg and it works like a charm. Has anyone else tried Celexa?
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Hi Susie-going on Tamoxifen pushed me over the edge into a deep depression-went on Celexa 40 mg which brought me out of it. I stayed on the Celexa for about a year, and now have been able to go off it. Still on the Tamoxifen for 3 more years...
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Looks like I can relate to all of you. Been on tamoxifen only 4 months and am extremely tired, moody, crying spells, weight gain even with 45 minutes walking on treadmill 5 to 6 days week, unbearable hot flashes. When you guys get an extreme hot flash, do you just feel like you will pass out? I didn't realize that being tired was a se of tamoxifen, I was thinking my heart meds that I had to start at the same time were possibly causing the fatigue.
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HI guys, just two weeks out of Bmx. I don't have to have chemo or rads (left side was prophylactic). I do think they will be recommending Tamoxifen, and I am really scared. I haven't heard anything good about it yet, and I don't want to gain weight. I know the alternative is worse, but i had such a small amount of cancer (two areas oof DCIS, and one area of IDC approximately the siexze of a pencil eraser). I knew about the DCIS and the IDC, but the second area of DCIS wasn't founc until they did the mast. In the left breast they found a benign tumor and cycstic changes, but no cancer. I also had a lymphectomy on the right which was clean. The estrogen receptor labeling index was 60% the progesterone was 90%. Does this mean I will have to have the tamox? Hope everyone is feeling better, and if you have to gripe, then gripe away you deserve it.
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Nikki- I'm so sorry that you feel like no one cares that you're miserable. I think that our loved ones (husbands and kids, especially) just want life to go back to normal and need to believe that we will be fine. So much so, that they don't want to see or hear anything that will contradict this. It sucks, and it's not fair. Its a good thing men don't get breast cancer. They could never go through what we have and still keep everything together!
I walked around with my Tamoxifen prescription for 2 weeks before I had the nerve to start taking it. Ultimately i am more afraid of not taking it and kicking myself later if i have a recurrence. Oddly enough, I feel more emotionally stable on it than I did before. I always had horrible premenstrual depression, so for my emotions, maybe less estrogen is a good thing. My body, however is another story-nstant cellulite!! I haven't really gained weight, but I've doubled my exercise routine to try to get rid of it...nothing! Just looks worse everyday! Also, I live in fear of DVT. I started taking an aspirin everyday when I began the Tamoxifen, but I don't think that aspirin really helps with those kinds of clots. Just makes me feel better. I'm glad some of you posted about calf cramps. I hadn't related that to the Tamoxifen - thought I was just out of shape after chemo.
Does anyone else work overnight? I just went back to work, and the hot flashes that woke me up all night long are now occurring while I'm working. It's awful to be talking to someone and feel the heat starting to rise, knowing the sweat is breaking out on your face. Makes me want to rip my wig off right there (imgine the reaction!!). Does anyone know of a way to time the tamoxifen so that hot flashes are more convenient?
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Lee, I used to work 12 hr night shifts, switched to 7-3 days a year ago, thinking it would be healthier for me. Just curious, are you a nurse as well?
I can relate to feeling emotionally more stable. I don't think it's the tamoxifen though, I think for me it's the fact that I'm just not having periods that often anymore. I recently had periods for 2 months in a row after several months without any and I have to say, one of the symptoms right before them was this very down, hopeless feeling like I used to get every month. I hadn't felt that way for months! The hormones actually drop just before menstruation, and it's the withdrawal of estrogen and progesterone that cause the premenstrual symptoms.
For me, I haven't found the timing of taking the tamox to make any difference in the side effects. I did try something recommended by my Onc, called tincture of rhubarb to stop them several months ago and it worked within a few weeks of starting it. I haven't taken it in awhile but may start again soon because with the heat, I feel the hot flashes starting to get bad again.
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Hi Rose, I'm not a nurse (should've been - I was a biology major), I 'm a postal worker. I wish I could switch my hours..you're right, they can't be very healthy.
I stopped getting my period after my third round of chemo (about 3 months ago). I definitely noticed a mood change that coincided with my first week of Tamoxifen, but it could be just coincidental with my hormones leveling off after my periods stopped. Either way, it's working for me. Am I right in assuming that you didn't have chemo, since you are still getting periods every so often? Do you have any idea how long my period needs to be gone before I can safely skip birth control? That would at least be some consolation after all of this!!
I see you're from L.I. also, where were you treated? Thanks for the tip about the rhubarb - I'll definitely look into it.
Lee
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Lee, you are not considered postmenopausal until you've gone 12 consecutive months without a period. I thought I was there recently, because I'd gone more than 9 months without one, then had 2 in a row. Now it's been 3 months since the last one, so we'll see. I was starting to skip them all the time even before the tamoxifen, but never this long.
I didn't have chemo, being I was only Stage 1 with an Oncotype score of 14. From what I've heard on these boards, chemopause can be temporary or permanent, seems to depend a lot on your age. I'm sending you a PM about my treatment.
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Hi!....
Oh my gosh - I love this thread.
I am in the land of suffering as well.
Hotflashes, sleepless nights, long periods, short periods, late periods...and oh my the dryness!
I just went for a pelvic exam and the doc said all looks find on the inside,,,she even commented on the fact that all of my "Coconut Oil" must be working....geez. Does she have any clue on how bad this is...... I think she kinda blew me off as well with all of my complaints,,,as she offered no alternative.
Anyway,,,I am in Canada and they don't do Trans Vag ultrasounds unless someone is symptomatic so it is not a practice here even if you are on Tamox. So how the heck do I know ifI have cysts or fibroids from all of this. My doc did mention that I could get a Uterine BX if I had symptoms....but nothing so far..just some spotting which I think was attributed to all the d*** dryness that i have been having....
Anyway,,,Nikki...1 more year I think I could handle. I have 3!! And not sure if I am going to make it.
I am seriously lookin at the risks vs benefits of this stuff so if anyone finds anything out there please let me know. I had tiny tumors...a 4mm and 1mm...grade 1 and no nodes.....ulitimately...is the tamoxifen even worth it!??? Plus I am 41 and pre-meno and I dont think there is an alternative.
Hugs and be strong!
Kosh
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sara---even with the ovaries removed, there is still estrogen produced by the adrenals, skin and fat. (so I still had to take tamox even after I lost the ovaries--not by choice, they ruptured--given a choice, I would've kept them)
anne
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Kosh - Not to freak you out, but spotting while you are on Tamoxifen should be checked out. It may be nothing, but could be a symptom of uterine cancer. I believe you have a greater risk of endometrial cancer while on Tamoxifen, but it is very curable if caught early. My mother was surviving with breast cancer, but ended up dying from a less common type of uterine cancer after tamoxifen.
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HI to all in this thread. I've just been after the surgery and after the post-surgery the meeting with my breast doctor. Mine in ER/PR+ so she said I would need a hormone therapy (something like tamox?)
I am menopausal already (turning 50 in couple weeks). I've recently gained weight (before I knew I had a BC, 3-4 months ago) and it is ugly! I blame the clymax started. Is there anybody in post-menopausal age and how does tamox effects you? More weight gain? Please, don't scare me!!!!
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WOW.... THERE ARE SO MANY POST ON THIS THREAD THAT ARE ALL OVER THE PLACE.. I HAVE BEEN ON TAMOX FOR THREE YEARS AND MANY SE BUT MOST ARE GONE NOW.. PERIODS.. GONE.. HOT FLASHES GONE... CANT COMPLAIN.. I UNDERSTAND THAT EVERYONE HANDLES THING DIFFERENTLY HOWEVER. I HAVE LEARNED THROUGH ALL THIS THAT FIRST, WE SHOULD ALL BE HAPPY TO BE ALIVE. SECOND. THAT THE MEDICATION THAT WE ARE TAKING IS DOING ITS JOB. THREE... YOUR IN REMISSION. SE ARE SE... THEY ARE WHAT THEY ARE AND WE HAVE TO TAKE THEM IN STRIDE.. WE ALL WILL GET THROUGH THIS.. I FEEL THIS TO BE TRUE.. BEST WISHES TO ALL AND HERE IS TO MANY CANCERVERSARIES......(((hugs)))
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alsu777 - Hi there! I am post menopausal and have been for 8 yrs due to a total hysterectomy. I started taking Tamoxifen in Feb. of this year. I have had very few side effects from it so far, actually I've had only 2. They are a low platelet count (which is a rare side effect), but it is just under the normal range and I have "creaky" knees or as my doctor calls it, crepitus. They aren't painful, but they sound terrible. LOL! For a short while I had a lot of really bad leg pain it lasted about a month and then just went away. During that time I thought I was going to die. It was like the worst arthritis pain I've ever had and I don't have arthritis. Thank the Lord that pain has ended! Otherwise I am doing well with it. I did not want to take and Aromatase Inhibitor like Arimidex or Femara. I felt like some of the other ladies that the side effects were just to great and it has to be a personal decision between you and your Onc. I hope everything works out for you.
Renee
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On Monday, before a Friday dx, I began to decrease the Premarin I'd said they would have to pry from my cold dead fist. Little did I know that it could have been that literal. LOL
I had every side effect Tamox can and Does give one. Also, had a great onc. who was willing to order anything I read about on this site--take note, that was almost 8 years ago, so we were a small group, learning as we went, just like you gals. So little was known back then, I've loved seeing the changes.
I made it a little over 2 years having tried every drug known to man for sweats/flashes that I had about every 20-30 min. Had all the other sx, too.
Effexor XL was a huge help as was belladonna. The very best results came from Megace.
After that quit working, my onc and I discussed that at that time, most recurrances were discovered by 24 months post op. He and I agreed that quality of life (remember, I'm a LOT older than you) was WAY more important than length of life, in case I was making the wrong decision to stop Tamox.
I was better in less than a week. I've never looked back and never regretted (and promised myself I wouldn't regret, even with a recurrance) my choice to stop the drug. Everyone has to make their own choices.
My recommendation: Find a new onc. You are not getting what you need from the one who doesn't seem to listen or make you feel s/he cares about you. If you don't trust the doc now, how can you trust him/her to determine if you have a recurrance/new bc? Even more than that; how could you trust them to treat it if you Did get it again? NAH---life's too short to stay with a doc who doesn't listen.
Interview a couple other (NOT in the same office--they all think alike) onc and determine who you'd want to treat you if you had a recurrance. I've fired a few docs in my time and always felt SO much better about my treatment.
See if you do, too.
Good luck!
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Like Marybe I should probably keep my opinion to myself but here goes. I was on Tamoxifen for 5 years after my initial diagnosis and chemo 15 years ago. Had mood swings especially during the transition from chemo to Tamo. Had hot flashes, night sweats, weight gain, aching joints. I had a lot of weight gain with chemo but figured heavy was better than dead. I "graduated" to stage Iv in May of 07. One of the things I am most thankful for is that there was a long time before my cancer metastasized. I believe if it had recurred 10-15 years ago, I would not have had the benefits of improved treatments that have been developed during that time. I am not in any way implying that your complaints vs side effects. Trust me, Stage IV is what you are experiencing now and then some. I do think that you can take Effexor with Tamoxifen for your side effects as well...just a thought. Good luck
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iam so glad u got the reactions u did nikki..remember, theres always one in acrowd.. and yes , the saying take what u like and leave the rest DOES come from alonon, and is great advise.. thers one from aa that is this too, shall pass...my friend says, this will, or i will, either way, it Will pass. not so funny to me since getting dx, tho....i was so crazy one the als.. i have multiple sclerosis, worked real hard to keep it in remission for 20 yrs!!!!!! taxotere took care of that.lol anyway, it makes me have excessive sensitivitys to drugs.. its a hyper immune system that attacks the good, and leaves the nasties. i just coul not tolerate the side effects from any of the ALs.. so, i quit..my heart has been in my mouth everyday since, and right now, im going thru gi testing, theyre looking for cancer AGAIN... i got a counsek=lor at the breast centre i go to, and he advised alaskan fish oil, dha, and were going to add dim if onco approves. he told me those, plus big doses of excersice is as good as ALs. im much older than u guys, turned 60 in march. have been doing all this to survive awhile 2 see my 2 granchildren grow up. the decision i made MAY shorten the #s of days, mos. etc, i have, and it may not affect it at all...well see. i was not good for anyone on the ALs, it wasnt worth living , and being a lunatic. my heart just bleeds when i hear your stories.. and i commend u for fighting so hard...she really is a beast, this disease. i know how u feel, i look in the mirror, and i dont recognize the woman staring back at me..no hair, no boobs, huge peices of flesh sticking out both sises of my trunck.. a carnival , yet, it is my reality...i was known for my long thick, red hair and big boobs for..oh,58 yrs..now, both r gone. i now have thin, spikey hair, like i stuck my finger in a light socket... more time to get back...i wish u all well. stay courageous.i think u guys rock, fighting everyday... light and love, 3jaysmom
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Funny, I had my oncology appointment today, and I spent most of it complaining about tamoxifen. I have only been taking it for two months, and I can't imagine taking it for five years.
I haven't gained weight (in fact, I have lost a pound and I'm underweight to begin with) but I am having hot flashes, sometimes 18 a day. I can't sleep - I wake up every hour sweating and uncomfortable - and the bone pain is incredible. I've tried two different sleeping pills but they don't work.
I am working only six hours a day because the first two hours I have to spend in a hot tub warming my bones so I can get up. I also have had some mood swings. I typically respond to things with sarcasm but I have almost cried a couple of times the past two months - I think the last time I cried was when I was 3! It's just not my way. So, it's changed my moods too.
I'm also looking older. I always looked ten years younger than my age. Well, that's all shot to hell. My skin looks like it's melting.
I work in a school (next week is my last week for the summer) and next August 2 I start the new year - and I have to work full-time again. I need this bone pain to ease so I can get up - I can't imagine getting up at 5:00 am. and working a full day like I am right now.
My doctor says this means the tamox is working - they are all symptoms of estrogen blockage. Because I'm HER2, he doesn't recommend that I stop it. He said that my cancer likes to live and that if we block the HER2 pathway with herceptin, than it might want to take the estrogen highway unless we block it with tamox. I liked the imagery but not the discomfort.
Anyway, he gave me percocet for the pain, but obviously I can't take that for five years. Maybe once my reconstruction is done I can do some exercising or yoga or something to help my bones/muscles. Right now I can't do anything with my right arm.
The pain is not fun. But, I keep telling myself, it's better than dying of cancer.I'm too young - I have no grandchildren, my youngest is still only 13, I have lots left to do. So, for the next years, I may have to struggle with some pain and discomfort. My quality of life will be diminished, and I hadn't planned for that. But, it won't be diminished enough for me to give up my chance at full recovery.
So, it is what it is. We got throgh cancer, I guess we can get through this.
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I had stage 1 grade 1 breast cancer 11 years ago, I declined tamoxifen, which was a big deal and I had doctors literally yell at me for my decision, I was convinced the cure was worse than the disease. I was recently diagnosed with stage 0 DCIS, grade II, microcalcifications on the same breast, same exact spot as before. EXACT spot. The surgeons all want to remove my breasts, which I am refusing. I think doctors never explore causes of breast cancer, which to me is the most important thing they should be researching. At the insistance of my family I am having a lumpectomy to remove this "hot spot". When I quizzed the doctor about statistics, about when they say "cure" they actually mean 5 years and asked the ONC whether he felt that what we put in our mouths and breathe in and stress...it was nearly exactly 11 years since my daughter had a horrible car accident to the day I was diagnosed...that could that not be a contributing cause of the reoccurance, he was honest and said "the cancer industry does not study alternative methods because there is no money in it." I asked wat ny chance were if I refused a mastectomy and only had a lumpectomy, he said "no one know that because women get afraid and cut off their breast." Unreal, no studies, no alternatives. I quoted canadian studies proving diet (very strict) and I mean strict because I am doing it, can reverse tumor size, etc.. etc andhe said very candidly, "could be true but we will never know in the US because no one is doing clinical studies." I find this appalling. if they were cutting off mens *&*## you know what, you bet there would be studies. So, here I am again, fighting the norm and up against the medical establishment, took me a month to find a surgeon that would do what I wanted, not what they wanted... have surgery July 1st and will once again refuse tamoxifen. I know I am gambling but I said to my ONC, ""i look around your waiting room and I want to cry, it appears to me you are not winning the war on cancer and we need to be exploring new methods to fight this disease." he was quiet and said, "they could be out there but until it generates revenue, no one will know." My God, this is unreal to me. We should be looking for ways to prevent this and sure I am scared, but I made it 11 years which statistically is pretty amazing. I intend to make it another 11 year..If we were making so much progress in treating cancer why is it that 1 out of 2 men get it and1 out of 3 women....I am trying something different, I will keep you updated whether I am right. Since starting this protocal all the fibroid lumps in my left breast are gone, miss my Suzy Q's and Diet coke but feel so much better..
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Hello Nikki,
Just saw this strand. I am perimenopausal and have been prescribed Toremifene (Fareston). Side effects are fewer than Tamoxifen. I was put on it because I am a poor metabolizer of Tamoxifen. I know the labeling for Toremifene says post-menopausal BUT there are doctors prescribing this to premenopausal women. Please reconsider this as a possibility to reduce your side effects before undergoing more surgery. Hope this helps as an alternative to Tamoxifen. The article Timothy referenced also said Torimifene can be prescribed for pre-menopausal women. Five year survival rates are NO DIFFERENT than Tamoxifen. In fact, Toremifene appears to be LESS TOXIC than Tamoxifen. Food for thought!!!
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So....I posted on the Tamox SE thread yesterday. I took it for 6 months. Nausea, fever (daily), personality change, insomnia....general craziness. I switched oncs during this time, and my current doctor took one look at me and told me to stop. (He is extremely well respected, and has been around for a long time). In his opinion, my quality of life for the next 5 years is really important. I am ER+/PR+, so I was really worried about what the risks were. He said 2-5% higher without the tamox. I was willing to take that risk. It took about 6 weeks to get out of my system. Because I have some bone loss, I qualified for 2x a year Zometa. You have been through hell for 4 years. Talk to your doctor about your risks if you stop, and consider getting your life back. I get blood work done every 3 months, and he watches me very carefully. Oh....I also had a D&C last month. The tamox had increased my endometrium in a crazy way, plus huge polyps that I was losing a lot of blood from. My iron stores disappeared. Had 2 IV bags of iron and am now back to normal. Think about quitting. A year is a long time. In my case, I have 2 teenage boys to launch. I was 44 when all of this started. PM me if you like.
Daff
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Nikki - as you are already 4 years down the track not sure if this can be of any help but I started taking tamoxifen just going on 15 months ago and had the most horrendous time that after 3 months I stopped taking it (horrible depression). I became very scared not taking it (didn't do chemo) and saw my Onc who asked me to try it again and gave me a script for Effexor. I was addicted to these boards during that time and I came across a woman who had split her 20mg tablet and took 10mg morning and night, she also started taking her pill at a "good" time during her cycle. I tried this and have not looked back. I had the CYP2D6 test as I have none of the "typical" side fx - no hot flashes, night sweats etc. I have, after 15 months, aged a little and have a few aches and pains (I am a runner) and have functional ovarian cysts which I take a little iodine for. It is however very hard to keep my weight on track, not like the old days pre bc. I have never had the script for Effexor filled. I have no idea why things changed so dramatically for me but I am extremely grateful. I am also keeping my fingers crossed another option for treatment will surface over the next few years.
I do hate the fact that I am ageing before my time and I do struggle with my vanity and energy levels but I struggled more with the fear when I wasn't taking tamoxifen.
BTW I am 48 and have two daughters 8 and 11.
Congratulations on your 4 years - you have showed incredible strength to get this far. I care that you are having such a bad time honey. My sister was 35 when she was diagnosed and couldn't handle tamoxifen (all of the things you mentioned) and had her ovaries removed instead. She is 46 now and struggles with a variety of things (she also did chemo) but she has a wonderful life.
big hugs
Helena
(edited to add that my CYP2D6 test showed that I am an Extensive Metaboliser)
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I do understand, like the devil you know (tamoxifen) and the devil you don't (recurrance). My doc took me off to give my body a break for 2 months, I am pretty much thinking I don't want to go back on it. I posted on another thread, I am just tired and wore down. Tired of the worry, the doctors, the drugs, everything. Just want my life back. I also had 2 biopsys, and an ultrasound, am bleeding again this week, they put me on progesterone to stop the bleeding, but said they won't do another biopsy. I think the drugs are just screwing up my body. I too am venting.
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I had written previously on this board about the tough time I was having with Tamox and how I stopped taking it, twice. I hope by writing about my difficulties w/ Tamox, I may help some others too. I started it on May 1...was fine for 3 weeks and then everything took a downward spiral. I felt like I had the flu, was completely wiped out, couldn't think straight (literally couldn't remember names and words). I had trouble doing my job or doing everyday chores. It was just awful...I had absolutely no energy at all. My oncologist told to stop taking it for 3 wks and then start it again which I did. The minute I started the Tamox again, the SE's started up! I'm now off it.
Oh, btw, I haven't done chemo or rads. My general attitude has been pretty good throughout this whole BC. I'm actually happy that my cancer was caught relatively early and that I had a BMX in order to be as proactive as possible. Anyway, I met w/ my oncologist on Friday. She said that it's VERY rare but she has had it happen with one other patient. Some people have big trouble handling Tamox and the hormones cause a deep depression...not just a depression but SEVERE depression. My oncologist said the SE's are being triggered by the Tamox, not that I was depressed about my cancer. She is going to have me try Effexor or 2 months by itself and then have me start the Tamox again after my exchange surgery which is scheduled for 9/1. If I still can't handle the Tamox, then I don't have a lot of other choices. I may just have to gamble, not take it and hope for the best. This was not a matter of slugging thru it, I literally felt like if I stayed on it, I wouldn't be able to function at all on a daily basis and I'm scared to think what my mental state would be as time went on. I have to think about the quality of my life too.
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