Bottle 'o Tamoxifen

Lolis197138

I would ask for a different ovary suppressant than lupron. I haven't read good things about.

Personally I didn't like it how I was while in chemopause. My hot flashes were bad and they stopped once the period was back and haven't had any since then. You can try the ovary suppressant and see how you react to it and if the side effects are hard to handle then you can switch to tamoxifen.

Scottiemom11

live deliciously I'm on the Tamox/Lupron combo b/c very highly ER & Pr positive. HFS on both are pretty bad,but MO put me on Gabapentin which helps. MO gave me the summer off from the lupron b/c of SES and exchange surgery. I'll go back on in the fall. Have you had BR CA testing? MO had me do that to determine if I needed a hysterectomy. Good luck

Scottie

live_deliciously

hi. I did gene testing and was negative.

CassieCat

I started Tamoxifen on April 6th of this year. So far, I haven't seemed to have any side effects that I can pinpoint to it. I was already having hot flashes due to chemo pause, but those don't seem to be happening quite so often anymore. I take the Teva brand and my MO had me start right at 20 mg from day 1. I have some insomnia, but again, it's hard to know anymore what is from what. I currently have fibroids and will fid out next month if there's been any change in them one way or the other. I worry about uterine side effects.

lala1

There are some threads on here about OS + AI that can give you some idea of what it would be like. I've heard AIs have worse side effects so when I had my hysterectomy in Jan I asked my MO if I would have to go off Tamoxifen. He said if he starts you on Tamoxifen he wants to keep you on it for 5 years even if you become menopausal in that time. Then at 5 years, he reevaluates. I also asked my BS his opinion on this. He said if you can be on Tamoxifen, he prefers it. Said the muscle/joint pain is usually pretty debilitating on AIs, much more so than Tamoxifen, without a corresponding huge leap in effectiveness. Of course, all this depends on your particular situation. In the meantime, I am staying on Tamoxifen as long as my MO will let me since I've managed to get my SEs to minimal.

live_deliciously

lala1 many thanks for sharing

Rosiesride

lala1... I have been on tamoxifen for 10 months...I have met with my gyno about a total hysterectomy as there is some thickening starting on uterine lining...I also have done ok on tamoxifen...I hope after surgery my doc also keeps me on it since I am doing ok with SE's....I never went into menopause...at 54 years old, my last period was my first day of chemo!! Chemo put me into menopause...go figure...all that estrogen probably helped grow my cancer! #shouldawouldacoulda....I will also ask my oncologist if he would keep me on tamoxifen after hysterectomy. Thanks for your post! I was looking for some insight! Rosie

Rosiesride

hi cassiecat...I also worry about uterine side effects from tamoxifen...I have been on it 10 months...had an ultrasound for fibroid last week,and to see condition of uterus...lining has thickened since March and doc did biopsy on uterine tissue...We are discussing when I will be getting a total hysterectomy...mainly because I am on tamoxifen, which has been ok for me with SE's....will keep you posted! Rosie

CassieCat

Rosie, please do. I have my annual exam next month and will request an ultrasound as well (not fun!).

Rosiesride

cassiecat...my gyno said that when the lining thickens past 4 mm, then they are concerned enough to do biopsy...mine was 7mm and 9 mm thick in some areas...she also found a little spot ( fibroid?) on one ovary...all of these changes makes me know I do need the surgery as I was hesitant about getting it ...a total hysterectomy with cervix included! Yeeks! Freaks me out! But I don't like the changes that have happened in the past few months!

Scottiemom11

cassiecat. . .MO referred me back to my gyno after putting me on Lupron/Tamox combo. I have just been going to regular GP for several years for annual exam but have had recurrent ovarian cysts since before kids were born, so I had a baseline ultrasound and have to followup with gyno every six months to track uterine lining etc. I'm guessing that at some point I will have a toal hyster. but who knows. I was not in menopause but lupron put me there.

Scottie

MarieBernice6234

Hi.

I have been taking the WPI manufacturer version of Tamoxifen. I recently had one episode of one CVS running out of the medication. The other CVS only had one more bottle left. I got it. It took several days for the stores to get their stock back up.

MarieBernice6234

Annie88

Mariebernice6234- I have been taking the Watson manufactured Tamoxifen, but my pharmacy keeps trying to give me Mylan. I tried taking that and suffered from insomnia terribly. My Dr. Said that they can't specify on generics, but she would write them a letter if that would help get the Watson brand. It didn't help they fill with what they have on hand. I spoke the pharmacist and she said that she could get me a 90 day supply if my Dr. Would write the RX out for 90. I am now set for 90 days thankfully. Maybe you can get 90 day supply and alleviate some of the headache. I actually paid for a one month and my 90 day because they overcharged me. I was already over it so I left just glad to have my RX for 90 days.

josie123

Annie,Marie, My MO wrote me a script specifically for the Teva manufacturer for Tamoxofin. I also had trouble getting it from CVS .So I took that RX to Walgreen s and They have been filling it since. I found Teva was the only brand I could tolerate . Once you find a brand that works try to stick too it. The other brands gave me itchy flaky eyelids. The several different manufacturers can add whatever inactive ingredients they want.

dtad

Hi everyone. I just saw my oncologist who wants me to begin Arimosin for 5 years. I know thats the standard protocol for my dx. Im very hesitant to begin after reading about all the negative posts on this board. When I told my doc I was concerned about the SE she looked at me like I was crazy. She said the majority of women have absolutely no side effects! So how about we hear from those of you that are doing well on the anti hormones.........

queenmomcat

A shy "I too would be interested in the experiences of anyone who has had no/minimal SE from anti-hormonals." Standard treatment as maybe, I'm not entirely enamored of the idea of taking something for FIVE years which will only drop my TEN year survival rate from 5% to 3%. (personal reaction only. That reduction may be worth it for a good many other people.)

Sofiejo

I have been on Tamoxifen for a year now. About 2 months ago I started experiencing diarrhea 3-5 times a day. Tried experimenting going off some of the other meds I was on under the supervision of my general practitioner plus doing blood tests, etc. Everything was negative so I was sent to a gastro doc for a colonoscopy. Still waiting on results, but I was wondering if anyone else has had this problem with Tamoxifen? I did not go off of that med. I have read about constipation problems

feelingfeline

Live Deliciously one thing I have read is that it is believed that tamoxifen sucess is someway linked with melatonin production. Studies done on the usual unfortunate lab mice showed that if exposed to even the equivalent of a streetlight outside a house at night the tamox was less successful. The conclusion being that it is advisable to sleep in a darkened room to let your body do it's correct melatonin production at night and ideally not to go on cell phones and tablets right before sleeping due to the light production.

http://www.ncbi.nlm.nih.gov/pubmed/25062775

the above is a US study from 2014.

I'm off for my postponed brain scan this afternoon (fun, fun, fun) and while away on hols a letter came that I have only just received giving me an appt with a neurologist on Aug 26th. May try and change this as it is for late afternoon and DS has his debs that same evening (this is like high school graduation prom) and I want to be home when he leaves to take the photo. So it looks like I will be continuing on tamox for the time being as I am sure MO will not be making decision until after neurologist has interpreted MRI....

To those who wanted to hear of no SE's on tamox I really had very little for the first two and a half years. Just the hot flashes. I have only run into problems recently. I had an Aunt who sailed through a 5 year course with no probs.

molly1976

Does it take a while for the side effects to kick in? I started tamoxifen last Friday and haven't noticed anything so far.

ladyb1234

Molly it took a few weeks for mine to kick in and boy they are still going. I like to see post from women who have minimal to no SEs :-). Hopefully you are one of them.

GirlPowerDebbie

My onc also wrote my Tami prescription for TEVA after I had bad reactions to other generic brands. 

live_deliciously

what an interesting article. I hope your scan goes very well. Thank you for sharing. Have any of you heard of foods impacting tomoxifen working? I heard not to eat grapefruit. When I asked my Dr she said because they both pricess thru the liver in the same way.

Karz72

Live_deliciously have a look at www.foodforbreastcancer.com - they have a good list on Tamoxifen & its interactions with foods etc that I'm trying to follow.

Molly1976 I haven't noticed any side effects yet, but I've been on Zoladex implants since December so the hot flashes started with that. I've been gaining weight since February once the chemo started working & am now back at my normal weight. Watching my waistline closely & starting to feel a spare tyre developing - my appetite hasn't increased & I'm trying to keep as active as possible to keep that off. It's completely superficial, but I don't want to have cancer AND a weight problem!

live_deliciously

thanks karz for that link. Very helpful but alarming what foods can do to help or hurt tomoxifen and breast cancer in general.

Does anybody understand why tomoxifen stops working after a while? I read that in a couple of places. And then why do they plan to keep people on it up to 10 years if it isn't working?

Karz72

Like any tx we use, cancer is trying to get around it & multiply. Some people stay on it for years beating the cancer, for others, the cancer wins & tx has to change.

Re: the change in recommended tx from 5 years to 10, my onc explained it as the result of a long term study of recurrence rates - people who had taken tamoxifen for 5 years (as recommended) then stopped, had a significantly higher rate of recurrence / progression after stopping than those who stayed on longer. Enough of a higher rate for the onc community to agree on a 10 year tx plan.

It's always a balance between the averaged stats & individual circumstance though.

islandmom

In 6 months it will be 5 years of Tamoxifen, my oncologist wants me to continue. I was so looking forward to being done.

"For women with ER-positive disease, continuing tamoxifen to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10. These results, taken together with results from previous trials of 5 years of tamoxifen treatment versus none, suggest that 10 years of tamoxifen treatment can approximately halve breast cancer mortality during the second decade after diagnosis."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596060/

SummerAngel

I've been experiencing very bad side effects for about 5 of the 6 weeks I've been taking tamoxifen. I'm surprised, I typically do well with medications. The worst is the eye trouble, I now have blurry vision, floaters, and achy, watery eyes. I'm getting cramps in my legs at night, which I've NEVER experienced before except when I was pregnant. I'm super irritable, and I have pelvic pain and pressure that goes from annoying to very intense at various times of the day.

I have grade 1 BC with no node involvement, a 6% chance of recurrence by Oncotype score (with tamoxifen). According to the cancer math calculator I have a 5.5% chance of death from cancer in 15 years if I take tamoxifen (very similar to the Oncotype result), an 8.1% chance if I don't. If the side effects don't improve in the next month, or if the eye exam I have scheduled for next week comes up bad, I'm going off of tamoxifen. It's not worth destroying my life over a decrease of 2.6% when I have a 92% chance of being fine without the drug.

feelingfeline

SummerAngel sorry to hear the problems you've been having. It might be worth trying the "banana a day keeps the leg cramps away" which works for pregnant women. Best wishes with your decisions.

Karz - thanks for v interesting info re foods and BC treatments.

Had my brain scan Monday and am now re-scheduled to see neurologist on Sept 2nd. Not worried about either as MO is really just ticking boxes. Apparently my GP (MD) will have results by Friday HOWEVER I got a letter in the post today from MO with new prescription for Exemestane (Aromasin) and Vit D + Calcium. He said to finish the tamox I have left (about 10 days worth) and then start the aromasin. I am taking it that this means MO has already seen brain MRI results and that they are fine, as expected.

So looks like I am waving bye bye to tamox and hopefully not hello to a new set of SE's!

Interesting note: BF's sister had BC at same time as me and had same surgeon, MO and Radiation Onc. She had a lower stage cancer than mine and hers was ER+/PR-, HER2+. This meant she got the same chemo as me plus herceptin, and the herceptin continued for a year after chemo. However MO decided her BC recurrence risk was so low that she did not need tamox. So i was surprised to hear she is also suffering the mental fog symptoms. Now MO did mention to me that chemo can cause problems down the line too. So hard to know what to do for the best isn't it!

Best wishes to all you tamox gals as I jump ship to AI's

molly1976

feelingfeline, thanks for sharing about your BF's sister - I am also ER+/PR-, HER2+ and have been kind of freaking out today because I've read that tamox isn't as effective for PR- ladies. But I'm also Stage IA, so maybe if I'd had her MO I wouldn't be taking it at all! So I will try to trust that for my Stage IA cancer it's giving me a little boost.

feelingfeline

Best wishes with it Molly.XXX

PS my hubby is from Charlotte NC