I don't want to take Tamoxifen. Anyone else out there?
Comments
-
My onc called Tamoxifen "not very friendly." We each have different reactions, and we're each differently informed and differently motivated. I was more than ready for a mastectomy. But I quit chemo after one treatment. I switched oncs at that point, and the new one said that Tamoxifen (and, for me Aromasin) was more important than chemo. Who knows if that is/was accurate. All treatments can bring both short and long term/permanent side affects. We have to take it day by day, and listen to doctors and decide if we think the benefits outweigh the risks. We sometimes don't know until decades later that a particular drug might not have been worth it.For me, I did stick for 5 years. I managed a few "holidays" during that time (went off for a few weeks). Probably not worth it because the SEs didn't slow.
1. My own hair did thin, but it is thick again now. And it's hard to say if it was from the chemo (I lost my hair and it was coming back in when I started the Tamox).
2. I didn't notice much in the way of emotions, but this stuff is messing with our hormones; it's bound to create any number of crazy results based on our own individual cocktail of hormones.
3. I was a single Mom and not active in that department anyway. But, yeah, it makes sense that could happen. I know that when I briefly took some progesterone to try and decrease heavy bleeding during my period due to fibroids (before my cancer dx), I could really tell the difference. I could not STOP looking at/thinking about guys!
4. I hate to say that I had hot flashes the entire 5 years. And I had a lot of trouble sleeping, more so than usual.
5. I did not notice any dryness "anywhere" (I still don't today, 9.5 years later). I did have a sister who had a hysterectomy and they took her ovaries too...she said her skin changed overnight. Again, by taking Tamoxifen we're convincing some of our body parts they're not getting estrogen anymore. So it makes sense that normal menopausal changes will occur.
You mentioned, unnumbered "achy joints." I had bone pain/aches...in my lower arms and legs. So there is the "commiserate" part. Now for the "light at the end of the tunnel." I didn't find that my side affects "evened out" while I was on the meds. But I went through menopause while on Tamox, and I switched to Aromasin. The bone pain faded some. But now I'm about 3 years out (no meds). My hair is thick. I've always been the same emotionally. I am what I assume I should be at my age regarding sex drive. The hot flashes finally stopped (long story, but they've started again when I started taking vitamin D in large doses due to a deficiency). The bone pain eased with Aromasin and stopped after (also started up again with my vitamin D...so odd). I'm not any "drier" anywhere than I would expect to be 9.5 years later and post menopausal. So - I hope you're able to hang in there if you want to. And, if things get tough, ask onc if you can have a vacation from Tamox and see if it helps. Mine really didn't. You know how he/she said it takes months to even out? I personally think it took me that same 6 months for my body to begin responding like normal again. Best to ya.
0 -
GG....I did two years of ovarian suppression with Tamoxifen....went thru menopause and am now taking Femara. My body is dryer...everywhere....and I am on a slow simmer. I asked my doctor when I would do better and all he would say is "soon.". So four years out, " soon" hasn't arrived. However, I have taken measures to mitigate my side effects. Quite frankly, I look around myself and it seems with all my friends dealing with all kinds of body issues, I consider myself luckier than most. So the ceiling fan above my bed has become my best friend. I go everywhere with a Frogg Togg chilly sport neck scarf wrapped around my neck. I often hide it under another more fashionable scarf which doubles to hide my sinking chin and neck. I drink gallons more of water each day and lube up from my cheeks to my toes each night with Vaseline. Haven't quite figured out though what to do with brittle nails......I walk and walk and walk even more to fight achy joints...
Bottom line is that I've had to be pro-active in trying to stay ahead of my side effects....perhaps in a few months your body might settle down a bit....but if it doesn't, make sure your doctor APPRECIATES what you are going through and tell them how much you need their help in navigating your journey. You need a doctor who values your well being and cooperates in getting you in the best possible shape.
Good luck!
0 -
EnuffZEnuff... Well, I guess you and I one of the unlucky ones with all of the SE from Tamoxifen... On August 15th it will be 3 month as I stopped taking tamoxifen (took it for one year). Everyone is different, I wish I have some good things to tell about this medication, however, I can not... I saw my MO last month and told her that this is it, no more tamoxifen for me...no more any hormonal therapy. I feel much better, however, still have some of the withdrawal symptoms . But most important, my mental health...I finally got back to myself. No more of browsing internet about cancer...no more itchy skin, no more hair loss, I am happy again. I still have fear of reassurance (I think this will never go away), but the paranoia is gone. If it comes back, I deal with it then.
Good luck to everyone!
0 -
AK1971, for perspective, see if googling Karolinska Institute tamoxifen breast density gets you to some interesting and perhaps reassuring info about studies being done there, that may indicate which patients benefit from shorter use of tamoxifen.A.A.
P.S. My tumor was 1.9 cm HER2+++ and I took tamoxifen at full dose for 1 year and then at half dose for 3/4 year, and no further. But alas, sex life ended and never recovered.
0 -
Hi ladies I have a quick question, I finished rads on 7/7/14 and was put on Anastrazole and I am having the increased hot flashes and a lot of joints pain and aches. I had a F/U with MO last Friday and they want to switch me to Tamoxifen. I am 51 and post menopausal, if anyone can let me know if they were switched and if it was beneficial or not I would really appreciate it or if one of the other threads addresses that better please let me know.
Thank's Shary
0 -
Shary, my dr switched me from Arimidex to Tamoxifen because I have osteoporosis and Arimidex attacks the bones. Have to say despite the SEs it has helped a lot with my bone issues; in fact I am out of the danger zone. It's no walk in the park but its manageable. I have 1 1/2 years to go. Do have weight gain, not a lot, hot flashes and concentration issues. It is a drug that helps prevent a recurrence so I'll suck it up with the side effects. Btw no problems at all with Arimidex.
Diane
0 -
I am posting this in hopes of maybe helping some of you ladies that are having a hard time with the side effects of Tamox. I had terrible side effects and called my Dr after 2 months and told him I couldn't do it anymore. He switched me to Aromasin as I am in surgery induced menopause, I feel like I got my life back! I still have a few side effects but all totally livable! My hot flashes have been cut in half since switching as well. I know this is really only for post menopausal woman but I just wanted to put it out there.0 -
Diane, thank you for the information and yes I agree that if the medicine helps to prevent recurrence I will take it and do everything I can. Tomorrow I am going to start a walking program early in the morning as it is hot here in Eastern High Sierras this time of year, so I am hoping it will help. I was going to start walking after chemo but a month out I cut my foot really bad which required many stitches and no walking, then I started radiation and had to be careful not to out in the sun to much so walking was limited. Now providing I don't break, fracture or cut anything perhaps the walking will actually commence.😄
Smitty333, thank you for sharing your story and at least it is nice to know that we do in fact have a few options.😛
Shary
0 -
Thanks to everyone who has shared their tamoxifen story thus far. I went to my oncologist 2 days ago because I can't stand the depression of tamoxifen anymore. I've lost my lust for life. She gave a few options:: 1) light chemo 2)Aromasin with induced menapause 3)switch to a sister drug of tamoxifen 4) a light dose of anti depressant. I am very much leaning towards going off tamox and no more further hormone therapy.
When I told her my eyeballs skin and hair were dry, she replied wryly, "It sucks to have cancer!"
I couldn't agree more!
0 -
gowanusgal, i was just reading earlier that turmeric is also effective as natural anti-depressant.. it's definitely anti-cancer.. so if you're not already on it, can give it a go?
0 -
I hear you
0 -
I'm old at 56 and taking exemestane I hate it
Feels like a 5 year prison sentence but oncodx was 34 I just couldn't do chemo didn't believe it would work and the risk of harm scared me.
0 -
gowanus - I also have what I believe to be tamoxifen related low mood. I don't want to go off of tamoxifen because of the benefit re recurrence, so I started on Effexor just over a week ago. 37.5 mg for the first week and then 75 mg after that. I have to say that my hot flashes have already subsided and I'm feeling better. I had never had to take a anti depressant before, so I was wary of it, but so far (crossing my fingers) I'm not feeling any significant side effects from it.
0 -
I started Tamoxifen in November. I was having the same symptoms all here have reported but I thought it was just because I was still recovering from chemo and radiation. I also was experiencing breathing issues. and was seeing a pulmonologist who put me on an inhaler. My PS had me go off tamoxifen before my exchange surgery and overnight things changed. I was peppy and happy and not debilitated by fatigue. Within a week, my face was noticeably thinner. And I could suddenly breathe again!
I went back on Tami at the end of May and slowly, gradually all the symptoms returned. Now it is August and my breathing issues are back.
I am now on day 2 of a tamoxifen vacation. I just needed to feel normal again and right now I do. I CAN BREATHE!!!
My situation is fairly dire in that I had an incredible amount of positive lymph nodes. I know I need some kind of anti hormonal to give a me a chance to keep the cancer away but I am not sure that Tamoxifen is the right choice.
My FSH test showed that I am officially post menopausal (thanks chemo!).
Also a baseline ultrasound shows a complex cyst on my ovary.
I am seriously considering removing my ovaries and getting on something other than Tami. I don't like Tami very much. She seems to give me asthma.
0 -
I have been on Tamoxifen for about a year and a half; I now have "Fatty" liver disease (I do not drink and am not terribly over weight...10+ vanity pounds). Has anyone else had fatty liver from this? They found it when doing a Cat-Scan of my pelvic region with contrast (stomach issues since chemo). The research I read indicated that 1/3 of people taking Tamoxifen develop liver problems
shari0 -
I am not able to take Tamoxifen due to high stroke risk (virtually every woman in my family has a stroke, my 18 year old daughter had strokes as an infant and still has TIA's) I had a partial hysterectomy - uterus and cervix removed - at age 29 due to prolapse. I'll be having my ovaries removed in October. If I left my ovaries my risk of recurrence without Tamoxifen is around 25%. Too high for me! I just finished chemo and will have a BMX next month.
0 -
Poconos3, sorry to hear about the liver.. have you tried dandelion/milk thistle supplements? i take it during chemo too..and it helps with my liver results!
0 -
shari, many older women have fatty liver without taking tamoxifen, but most don't know it because they simply don't happen to be imaged for any reason. I have it too, discovered because of monitoring cancer. I mainly eat veggies and fruits, some fish and chicken and eggs, and use low-fat dairy. I'm more than 10 years out from dx and still NED. I did just 1 year of tamoxifen at full dose and then 3/4 year at half-dose.A.A.
0 -
How you react is specific to you. How you react might be immediate or it is possibly months or years out.
I took Tamoxifen ($0.67/dose) for 7 weeks. No depression, mild hot flashes, no change in sex drive. At 7 weeks, I developed hives on my arms and legs. Within 24 hours, my ankles and feet became swollen to the point walking became difficult. I stopped taking Tamoxifen and after 3 days of nurses and then a doctor telling me it was not due to the treatment, I met with a PA in oncology. She gave me an emergency dose and then a course of progesterone to counter the reaction. All these medical folks said they had never seen such a reaction. Today, the oncologist said given the hives did not subside for 10 days after the progesterone, it was definitely a Tamoxifen reaction.
Put on Exemestane ($9.16/dose) today with joint pain, osteoporosis, hot flashes, dizziness as a few of the common side effects. Hope for better results this time as I have a family history (mom, 2 aunts) of BC.
0 -
Wow....your story (& concerns) sounds just like mine GowanashGal. I was Dx at 41 with stage 1a ER+PR- 10 months ago. I had a BiMx & recon earlier this year. I refused Tamox due to already having ovarian cysts, possibly endometriosis + all the other SE. I also wanted a chance to investigate supplements. I worry about the same menopausal stuff & have been dragging my feet on further treatment. I don't think it's unreasonable to desire quality of life with extended treatment such as Tamox, etc. I went thru several scans (U/S & MRI) to find out if my cysts were suspicious. I like to keep my original issue parts & I already lost my boobs, so I want to keep my ovaries if possible. GynOnco suggested Zoladex instead to see if the cysts respond to lack of estrogen. MedOnco wants to put me on an AI along side the Zoladex later if I continue that route. Started Zoladex injections a week ago. I figured it was a reasonable alternative until I could wrap my brain around something else. Honestly, I am dreading the menopausal symptoms hitting. Been married over 20 yrs now & intimacy has just gotten good these last few yrs.....now this.
I'm usually told (by well meaning women) that having a hysterectomy was the best thing they did or going thru menopause isn't so bad. I then ask them if they took HRT. Most of them said YES. There's the difference. I did ask my onco about vaginal dryness & she said (as a last resort) that she could prescribe Estring. Not sure what can be done about libido. I also know that anti depressants can cause sexual disfunction as well. Dbl whammy. Been there, done that. She wants to monitor me for worsening depression. We'll see what happens now. I'm now speculating when my first hot flash is going to happen. Home.....church....school volunteering.....new job..... lol0 -
Good afternoon and blessings to all
I am 47 (body type, personality and health of a 27 year old) pre-menopausal. One of those 7% of why did this happen maybe its the 7-13% body fat with dense breasts my whole life? Cant be too thin or overweight need to be just right - LOL
I was dx 7/11/14 with stage 1 infiltrating ductal carcinoma. modified Nottingham grade 2. 1.5cm r breast tumor. No findings anywhere else. ER/PR+ Her 2neu negative. Lumpectomy with sentinel node dissection (3 nodes) No findings in the lymph nodes. Braca1/2 reflex bart test clear. Oncotype score 26(intermediate with 40% chance of inaccuracy). Waiting on mamma print. Just started localized direct target radiation to R breast and .07cm margin near chest wall. It has been suggested i do chemo then tamoxifen.
MY Questions are around quality of life:What would you do if you were me:
I have a 95% survivorship with R breast after lump and rad and 60% survivorship for rest of body. If I add chemo it goes up 3-6% and if I add tamoxifen it goes up 17-20%. Putting me in the 86-89% range. BUT what about "QOL" Quality Of Life issues???
With chemo and tam the SE's as you know and have read here are horrendous. I have never been able to tolerate hormonal deviations. At 17 when my menstruation began they put me on ortho pills to regulate menses they made me worse overall but periods were more regular. Weight gain, headaches, nauseous, very depressed and angry.
I take nutritional supplements now and they regulate my periods well but they are not helpful/contraindicated or recommended for chemo or tam. I now have osteoarthritis and I have not started any hormones or chemo yet.
My neurophysiological system is very sensitive.
My 17 year old daughter says don't do it. My sister and brother in law don't do it think of quality of life. My husband says lets wait for mamma print get a second opinion AND lets see what other women like yourself have to say about their quality of life. My friends say do it. My family all physicians and in the cancer field say look at the numbers. I am not a number though. I am an individual who philosophically is against toxins in the bodymind.
Many thanks, warm regards,
Jyoti
Thoughts, comments, feelings
0 -
Jyoti - I would say try the meds. You may be one of the lucky ones who experiences NO side effects. If not, you can reevaluate your decision at that time. What do you have to lose? (This is from a woman who has already tried 3 different meds, about to try one more. If that one doesn't work, then and only then will I call it quits.). You may be against toxins and meds, but you would be against a recurrance even more.
0 -
I have been taking tamoxifen for three years and have had little- or no side effects. So I would tend to agree with BayouBabe... why don't you try it first to see if you're going to be one of those women who do just fine on it.
0 -
It kind of depends on age/menopausal status. I was 52 when I completed chemo and rads. After just 2 weeks of tamoxifen I had no libido at all. That has never changed, even though I reduced the dose and then stopped it entirely after 1 3/4 years. The tamoxifen otherwise didn't give me much in the way of other problems. I dealt with the frequent hot flashes and sweating.
A female endocrinologist who is under age 50 and who has never done chemo personally told me that "probably" the chemo was the cause and not the tamoxifen, and that the tamoxifen "pushed me into full menopause" without being a cause itself. (???) My sex life was going fine after completion of chemo, though, so I don't understand why a drug that wouldn't cause that kind of abrupt change itself, when taken by itself, would have so suddenly and completely wiped out my libido permanently.
A.A.
0 -
I think we tend to read and hear more about side effects than hear from those who have few or no side effects. That said, I took Tamoxifen and did ovarian suppression with little discomfort. I'm now taking letrozole for two years. I always feel warmer than I did before this journey began. But then again, before this journey, I always walked around feeling cold....
0 -
Hi everyone,
I am starting my 3rd bottle of Tamox and still hating it every day. My face has become very hairy and skin is changing (wrinkles, pores -- sagging a bit) as my hair continues to fall out!! I hate to say this, but I am vain!! ha! I don't mind the fatty liver or some other internal changes I can't see. I do feel so depressed from not knowing who I am anymore. No libido. Weird moods. Looking middle aged. Yes I know all these things would happen anyway, but I expected them to happen much much later.
I don't really want to take anti-depressants so I am trying the work out thing to see it it will make a difference.
All I know is, I had to wax my face for the first time in my life today. And I'm only 40!
Oh cancer. You are a horrible guest in my house!
Purplelei - I FEEL you sister! I don't want to remove my ovaries or do anything else medical to be honest. I give it one more month and we'll see where I am.
I hope you all are doing well!
-GG
0 -
Hi all,
I just discovered the thread on half / low-dosing of Tamoxifen:
https://community.breastcancer.org/forum/78/topic/...
As well as a thread on Tamoxifen gel:
https://community.breastcancer.org/forum/78/topic/...
Since I am so close to calling it quits, I might talk to my Onco about doing the half dose of Tamoxifen. It may be our compromise since I simply want to quit.
Let me know if any of you speak to your oncs about this! I will report back after my 3 month appointment in September.
- GG
0 -
I have been on low dose tamoxifen for the last four and one half years, and only just recently quit it totally. Yes, I had quite a variety of side effects, the most visible one was a limp which I have had for almost one year. All the oncs told me it was not tamoxifen but my age (now 74) but after quitting on July 17 my brains are now more focused and the limp is slight. I am hoping the other side effects resolve within the next several months. I really tried to stick it out for the total 5 years, but the relentless hip/knee/ankle pain became just too daunting. Assuming that the all the side effects do resolve then I would be willing to try another year or two on T again.
0 -
Anyone feel like they have morning sickness with Tamoxifen? I do!!! (And pregnancy would be impossible as I had my tubes tied.) Also, makes me more tired towards the evening and a general feeling of being sat on by an elephant? also hot flashes (i can deal with those) but no desire whatsoever or energy to go out and "have some fun." my idea of fun now is sitting on my heating pad and watching netflix.
I feel like an old lady. 0 -
GowanusGal -- On the hair thinning, someone else on the DIEP thread talked about experiencing hair thinning and she was not on tamox, and attributed it to the surgery. I also had some hair thinning that peaked a few months after DIEP surgery. I thought it was the effect of tamoxifen. In any case, I started taking Biotin (2,000 mg per day) and it has stopped. I have no idea if the Biotin made a difference or not. Hoping yours stops as well -- it was very annoying to me -- finding hair everywhere.
I'm pretty close to being on tamox for a year. A couple of months ago I started Effexor -- I was having trouble sleeping because of hot flashes and was just feeling crappy/blah -- depression or low mood? In any case, the hot flashes are much less troublesome, I'm sleeping better and feeling better, so I'm feeling that the Effexor is a success for now.
Of course, I recently found out I have a few ovarian cysts, a fibroid and thickened uterine lining, so I'm off to see the gyno.
I sort of feel like I'm playing whack a mole -- I get one thing under control and the something else pops up.
0
