Bottle 'o Tamoxifen

WenchLori

Artista, I'm sorry to hear that you are still having problems with your radiated side from almost a year out? Did your MO rule out the Tamox as the problem for your skin being so bad? I'm just asking as I know nothing about Tamox and won't pretend that I do. All of the skin under my treated arm peeled away and was a weeping nasty mess. My MO wanted it to clear up before starting Tamox. My radiated side looks just like it did before I started radiation and it's been about 5 weeks since my last treatment.

Mom2, I've used Effexor about 25 years ago and it turned me into the most angry irrational person on earth. It's been 25 years so I'm hoping 1. I don't have any SEs (dreaming) 2. We can find something that will work for me. My bodies been through a lot in the past year and so much has changed in the past 25 years so I'll be willing to try Effexor again and take it one day at a time. Your random shivering must be hard to deal with. I'll be praying that it stops ASAP.

Gardengypsy, I'm glad you aren't having any skin SEs. My MO kinda scared me when we talked about all the SEs that Tamox can cause. I've tossed that fear aside and I'll just take whatever comes in strides. One day at a time

Artista928

My rad side has always looked angry so it's not the T. That's great that it looks the same as the other side. I didn't realize you had faired badly with rads. So it makes sense. Mine is as good as it gets with most of the time looking angry and some days where it looks a lot better. Weird.

And definitely do not not do it because maybe skin se's. People who have that seem to find a way to deal with it in order to cont protective tx.

WenchLori

Artista, thank you, I wouldn't dream of not doing everything I can to get through all the ugly stuff that comes with BC.

Anonymous

I had my 6-month follow up today. I was hoping to get off the T-train sometime this year if my bones got stronger, but my oncologist said that she'd prefer to wait up to the 5th year to recheck! I think if you have osteoporosis, you're scanned every 2 years? Anyway, I'm planning to still get the dexa in October and if my osteoporosis has improved enough maybe she'll change her mind.

Pamela23

ILSunrise, I took it upon myself to get a pap smear and a sonohystogram (they fill your uterus up w/ saline and ultrasound it to get measurements). I'm glad I did. She founds a polyp she will remove on Monday. I'll start Tamoxifen a couple weeks afterwards.

Anonymous

I'm also on Effexor to try to reduce hot flashes and have very vivid, detailed, and strange dreams! Yesterday I woke from dreaming that Michael Jackson was a vampire (which was a small detail to a far more complicated storyline lol).

My mother took Effexor before she passed away and used to comment about her crazy, vivid dreams, too. They aren't stressful to me...it's kinda like watching a movie (a movie I happen to be in lol)! I was on a different med before the Effexor and had the dreams then, too, so I think it's an anti-depressant thing rather than specifically an Effexor thing...

ILSunrise

Pamela23 - Thanks for the information. I'll mention it to my OB/GYN. I have an appointment coming up with her.

Pamela23

ILSunrise--call your GYN's nurse and let her know you want it beforehand so they can prepare for it. I was put in a different room than usual which had the machine and she needs an assistant to ultrasound while she fills the uterus.

ndgrrl

Hi, has anyone else returned to using Tamoxifen after being on Femara? I was put into surgical menaupause and bucked going off Tamoxifen for a year and then was put on Armidex which gave me severe cramping and ankle swelling. I then was put on Letrazole(Femara) last Oct. I had a dexa scan last month and in the 10 months I was on an AI my bones have thinned, still normal.. MO NP said if I got to the Osteoporosis stage I could get treatment then, UMMM why let it go that long? My cholesterol went up on the Ai. It was normal just a year ago when I was still on Tamoxifen. She told me my GP could treat me with a statin. UMMM why treat a side effect if I do not need to be on that drug. SOOO frustrating My original MO told me that an Ai gave me a better chance of no reaccurance since I was now post menapausal, he rattled off a number but I could not remember what the percent was. I asked my new MO she told me there was no way to know the reaccurance rate. UFFFF... Feeling defeated. I am currently on a 2 week break from LEtrazole as I have alot of tinitis and my ENT suggested Letrazole could be causing it- so far still no help on the ear ringing but now I have to decided what drug to go on and my MO is no help. SHe says it is up to me. How can I make that decision with no percentages of reaccurance. is it 1 % or 25? Thanks

Artista928

At stage III with other stuff that makes me high risk, I still stopped Letro after 5 weeks. It was so debilitating. That's not living and I'm 52 and not ready to feel like I'm 100. I already feel 80 most of the time with fatigue. If I were a stage I or II with or without nodes, I wouldn't have had a second thought and would not have put myself to 5 of the worst weeks of this bc journey of mine. Chemo was much better. My MO said IF it works as is the case for all these hormonals that it's only 3-4% extra protection v Tamox. No thanks. I still stand by my decision as I'm doing quite well on Tamox.

exercise_guru

I swear at one point or another in a 3 month period I experienced all kinds of side effects on AI. I tried Arimidex and then Femara and then went back to Tamoxifen.

The tinnitus did go away after I went of AI but it took awhile.

ndgrrl

I am happy to hear I am really not going half batty and that others have experienced tinnitus when on an A1. My MO's have both said it was not from the Femara. My ENT did a web search and found out where there are many reports of Femara causing Tinnitus. Do you happen to remember about how long it took to go away? I really hope it does soon before my ENT orders that brain scan and carotid artery scan. ;( Feels so frustrated that these things are not reported or known more by MO's.

Anonymous

ndgrrl...I am post-menopausal thanks to a total hysterectomy at 34 due to fibroids and endometriosis (16 years of HRT a potential cause of my cancer at 49). I looked at the risks of an AI and went with Tamoxifen for several reasons:

1. I already have Osteopenia (thining bones but not yet osteoporosis) and my mother had severe osteoporosis. Given this was a primary side effect of AI, I was less inclined to take on that side affect vs. the small stroke risk of Tamoxifen (no girlie parts, so I don't have the concerns about uterine cancer). Side effect = pretty much guaranteed; risk is "might happen"...I'll take the "might happen" over the "enjoy your broken hip"!

2. The stats the doctor discussed were minuscule compared to the side effect risks of the AI (it was ridiculously small the way she explained it). I suck at statistics, but what she explained to me (as I recall from 6 years ago) was if there is a 15% higher benefit, it's like 15% of the remaining risk. So, let's say you have a 10% chance of recurrence with Tamoxifen (reminder: I'm making up all the numbers here lol), if there is a 15% improvement with an AI, then it's 15% of that 10%. It ended up being like a net "1 person out of 100 won't die" type of result; whatever it was, it was ridiculously minor relative to the risks of the AI for me.

3. I had early stage BC. Grade 2 but no spread found. My Oncotype test cited a 14% chance of recurrence. I took that to mean I have an 86% chance I'm done dealing with this particular bout of cancer (I note that I've always said I'm a "lumpy, bumpy" girl given the fibroids, basal cell carcinomas, plantar fibromatosis, and such that I've had already...I'm bound to die of some cancer or another given my med history)!

4. I already have so little estrogen given the hysterectomy; that added confidence to my decision.

That said, holy cow the dryness, atrophy and burning that started a few months after they took away my beloved estrogen pills was a major issue for me. Replens did nothing for it (and was a complete mess since there wasn't anywhere for it to go but back out). I ended up accepting the additional (should be minor) risk of using an Estring (a silicone ring you insert once every 3 months that delivers estrogen to local tissue; it's not supposed to be picked up systemically). It was a *huge* improvement in my quality of life that makes it worth any additional risk (although I'd expect the Tamoxifen to address any risk just as it does for pre-menopausal folks).

So, my guidance is to try to understand how the stats translate into "out of 100 people...how many of those would die if they took Tamoxifen instead of an AI?" There are stats...studies are out there like this one. Oh, and when I went on Tamoxifen I was supposed to be on it for 5 years; new studies a year or two in made my doctor say I have to do 10 years.

Sorry this is so long...best of luck to you!

mellee

Anyone else start breaking out after taking tamoxifen? I did starting around the third month. This after having perfectly clear skin for almost twenty years!

A doctor friend of mine suggested spironolactone, but it's a hormonal treatment (an anti-androgen), which makes me nervous. When I looked it up, no interactions with tamoxifen are listed. But I'm still wary.

gardengypsy

Although I am post-menopausal, I decided that the Tamoxifen would be the right choice. The chemo was really tough on me and my onc said that Tamoxifen would be easier. It's been one year. My side effects are knee and joint pain, a lack of libido, and brain fog. I can live with this.

WenchLori

Gardengypsy, low libido? Awe man! My MO said Tamox might help bring my libido back. I'll accept whatever SEs come along. Has anyone else had lower/higher libido on Tamox?

gardengypsy

Lori- It could be from the chemo, of course. So many treatments and drugs and can't figure out what has caused which SEs.

ndgrrl

Thank you Tina, your explanation made a lot of sense. I have no libido on Femara, Tamoxifen did not affect me a whole lot- I was on it a year after my ovaries were removed as I wanted to stay on it but my MO talked me into trying Armidex- horrible joint pain and swelling and now Femara has took my libido and I do have problems with dryness and atrophy. I feel like an old lady in that department. Do you get a lot of hot flashes on Tamoxifen?

My MO told me there was not way to figure out reaccurance rate difference between an Ai and Tamoxifen. I knew there was a way based on my own numbers.

Wenchlori. I did not have libido problems with Tamoxifen. I actually had to wear a pad for a bit when I first started because of the extra vaginal discharge.

These meds are sooooo frustrating!!

Thank you Tina for the link. That is really some confusing information. From what I understood of it, it is like a 1.4 percent upped reaccurance by doing Tamoxifen instead of an Ai. That sure is not much if I am reading it correctly.

Anonymous

ndgrrl...I think you are reading it correctly (but again, I hate the statistics thing lol). It was also my takeaway from my oncologist 6 years ago. I do have hot flashes every hour or two...that's certainly a trial! I'm really hoping they go away in 4.5 years when I come off the Tamoxifen! I hear you on the frustrating part!

BebeZF

Hi Annoyingboob

Are you still taking tamoxifen? I have just started and try to be optimistic, but already feel super tired. How are you doing?

Bebe

javamama

My MO is putting my on the tamoxifen for the next two or so years. He wants me seen by an Ob/Gyn before I begin. Anything I need to ask for or have the gynecologist look at for starting the tamoxifen?

Pamela23

Javamam--I had a sonohystogram done to measure my uterine lining for a baseline. They found a polyp that I'm having removed on Monday so I'm glad I did! Not starting tamoxifen until a couple weeks after healing.

javamama

Thanks, Pamela!

lala1

I had a transvaginal ultrasound (TVUS) but not till about a year after starting Tamoxifen. It found some issues that eventually led to my total hysterectomy. Other than the occasional hot flash and achy joints if I workout too much, I am feeling excellent!

Lordhelpmetoo

tinaj, you had bc 6 years ago. This gives me so much hope! And you had no chemo... that's great! Did you change your diet, cosmetics? Please shar

annoyingboob

hi bebezf,

No, I stopped taking it. I lasted a month, was crazy tired, my uterus felt huge, and I gained 15lbs. Mo wants me to try again, said SE go away with time, and I do feel guilty for not staying on it, but I've decided instead to try to get in the best shape of my life. Fingers crossed. Good luck to you!!

Anonymous

Hi Lordhelpmetoo! I haven't really changed anything that I can think of. I have gained some weight (and lost it and gained it again) since my diagnosis but I've battled my butt all my life and I knew I was going to get the menopause 15-20 lbs at some point! I've had a number of ankle and foot issues over the last two years (I'm wearing a medical boot as I write thanks the sprained ankle/slightly broken tibia I managed to inflict on myself two weeks ago rolling off a curb) that have limited my exercise so that truly isn't helping the size of my hind end!

As far as chemo...I was an Oncotype score 21 and a 14% recurrence score on the report, if I remember correctly. To me, that's 86% NO recurrence score; I'll take it! lol. It was my option whether to have chemo since I fell in the middle range. As I believe I noted in my profile comments (which I will have to read again after I write this because I'm no longer sure what I said in there lol)...I choose quality of life over quantity, if it comes to that. I didn't feel the need to "throw the book at it" since I don't have any kids (stepkids...but they're all adults now). I doubt I'll ever do chemo (although tell me I'm dying an maybe all bets are off...who knows lol). I chose not to share my diagnosis at work except with a few folks (work in a 5-floor corporate office with over 1,000 people) and not losing my hair really helped with that (although the daily early departures for several weeks for radiation probably clued some folks that I was having cancer treatments of some kind).

It looks like you've caught yours very early. Unless you have a positive BRCA score, you should be fine!

Best,

Tina

BebeZF

annoyingboob,

I hear you, the fatigue hit me hard. I am taking it in the evening and the tiredness is unreal. When during the day were you taking it? I also make myself move no matter what. I walk a minimum of 2-3 miles a day plus I work out 2-3 day in addition. I think this will be the only way, let's see how long I can last.

Keep me posted. Are you planning on starting it again? I promised myself 6 months unless it's completely unbearable then I will stop it for the summer and start again when my daughter goes back to school.

Did the SE go away quickly when you stopped? Or lingered?

big hugs

Bebe

Hopfull2

hi everyone, I've been on tamoxifen for a 1 1/2 months. My SE are not too bad. Hot flashes every once in a while mild joint pain But I do have mild abdominal pain. I went to my Dr and I had a abdominal and vaginak ultrasound and it came back normal. Do any of you experience the mild abdominal pain. My period has not returned since starting chemo and chemo ended end of February.

annoyingboob

hi Bebe, I started out taking it at night, but had insomnia, so then switched to the day. I was pretty nonfunctional, aside from dog walks and some attempted Pilates. The growing uterus was my biggest concern bc I have small fibroids, and I didn't want those ballooning up and requiring a hysterectomy. After I stopped, it took a good month and a half to feel better. I should mention that I'm very sensitive to all medication, and usually take half of needed doses. But the whole tamoxifen dose really did me in. I'm supposed to start again, but now that I'm finally good and walking and exercising, I can't imagine going back to that state. I'll re-evaluate once i lose the 25lbs I gained - 5 down so far!! Please pray for me that follow up mamms are clear!!!