Bottle 'o Tamoxifen

Falconer

Hi annoyingboob, it's your friend from Let's Post!
I'm following this thread bc I may switch to Tam at some point. My MO started me on Lupron and an aromatase inhibitor. I see that you only had a small DCIS grade 3, whereas my 5cm of DCIS had gone to IDC by the time we found it ( annual mammos since I was 35 no help).
The SEs are actually becoming manageable as long as I exercise lots, and since that's your goal, perhaps it's a plan you can keep in mind should you need it some day. I am thankful that you're sharing your experience with Tamoxifen so so I might know what to expect if I make the switch.

lala1

Hopfull2---I had nausea on Tamoxifen if that's what you mean. I think mine was a result of all the anesthesia from the surgeries. Once I found a really good probiotic, my nausea went away. Of course, it could have just been time too but I'm pretty sure it was the probiotics.

annoyingboob

hi falconer,

I should also mention that when I had bilateral lumpectomies, I also did a breast reduction. So in my mind, there is half less breast tissue to get recurrence, and that should count for something. Not very medical, but that's how I think. If I had idc, I would try it longer, I think. I just can't imagine 5-10 years of feeling like crap for 7mm of Dcis. Against all medical advice, I stopped it. But I do appreciate your advice regarding exercising through the SE - I had read that from a few other women too. I may give it a shot again at some point. Everyone is so different, in no way do I want to discourage people from taking it

BebeZF

annoyingboob,

I see what you mean. I am on my third day and take it in the late evening and shortly after feel super tired and foggy. Almost like I had 2 glasses of wine without the fun of having them. I haven't had the radiation so I know I got to give it a good try. I will pray for you for sure. Just know that the radiation reduced your risk dramatically so Tamoxifen is not a must if you can't handle it. It may protect the other boob (the non - annoying one) though. For me radiation was a no go, especially since Onco type DCIS showed 0 (on the scale from 0-100) which is no benefit. I know I got to do something so one day at a time....

I can't believe you gained 25 lbs, that's my biggest fear too and the uterus as well....gotta keep positive....we will be allright

Have a great Sunday

Bebe

Melibear

I just started my tamoxifen last night. I already had joint pain, hot flashes and leg cramps prior to starting. Hopefully the won't become unbearable. FYI. A shot glass of pickle juice helps with leg cramps.

molliefish

i think it's the salt...The last oncologist i saw told me to take tonic water at bedtime to help with cramps ..... i still just take a glass of water, but i'm thinking about increasing my intake of gatorade or some such thing daily... recently working out i got wicked cramps in my feet... and the other day while driving. thankfully it was my left foot....LOLOLOLOL

stephilosphy00

I started Tamoxifen last night!

WenchLori

Good afternoon everyone!

I'm at my MOs office right now getting my Tamoxifen prescription. I'll probably start taking it tonight. Fun! Fun! I'll keep you posted on any SEs but I'm really praying I skip that part!

HoundMom

I am starting my Tomoxifen on June 1 after a holiday weekend to celebrate rads being over. I am nervous but going to give it a try. Thanks for all the support.

Trvler

Welcome to the club, Steph.

Moderators

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WenchLori

I just got done at my MO's office. He's changed his mind about starting me on Tamox after going over my charts. He feels Arimidex will be a better fit for me, so we'll see!

I'll keep checking in just to keep an eye on everyone here.

Gentle healing hugs to everyone 🤗🤗

tbalding

Good luck all who are just starting tamox. Praying for no side effects. So far I've been one of the lucky ones and hope you all are too.

stephilosphy00

I think I won't be on tamoxifen for too long , my onc want to switch me to Aromasin and OS after I finish radiation. Anyone here start hormonal before radiation?

Artista928

Lower abdominal pain is probably your uterus. I have 4 fibroids that my pcp said T is most likely causing them to become agree and/or to go. I'm only 1 year in on T and am on the 10 year plan since I can't tolerate AIs (I'm 52 and in menopause). Problem for me will be easily solved once I'm ready to have a hysterectomy therefore getting rid of the problem and the small chance of developing uterine/endometrial cancer that T may cause.

duchessoftea

Hi,

I am new to the forum and would like some input on Tamoxifen. I have completed chemo and double mastectomies. The MO want me to take tamoxifen and I am not sure about this since I am only 43. I have noticed several women on the forum that had recurrences and mets while on Tamoxifen.....did you all take Tamoxifen initially and still get a mets or did you start taking it after mets or recurrences? I am trying to decide if the side effects are worth it or if I should take a wait and see approach....Thank you for any advice:):)

ParisParis

Good evening (well, it is evening where I am)!

I thought I try here if there is anyone who has had a similar experience. I am perimenopausal and have been on Tamoxifen for three months. A blood test done for an observational study about the quality of life after early stage breast cancer showed that I have oestradiol levels of 1258 pg/ml - these are the values of a first trimester pregnancy. I have not menstruated since starting with Tamoxifen, but still did so before The MD in charge of the study said that such high levels are normal on Tamoxifen. I find these results extremely worrying, especially when thinking about my uterus - not only the raised chance of uterine cancer, I also have three fibroids. has anyone had similar levels, gave they eventually come down? Thank you!

dtad

duchesoftea...I know it's a difficult decision. To start your age is probably why you should take Tamoxifen. You are so young and want to live a long life. Unfortunately there are no guarantees if you do decide ti take it. IMO most women who had recurrences on probably did take it from the start. It is suppose to reduce recurrent rates by 50 percent. I'm much older and stage one. I have decided to not take an aromatase inhibitor for several reasons. However if I was your age and had your stats I would definitely give it a try! Good luck and keep us posted.

duchessoftea

Thank you, dtad! I appreciate your perspective so much!!

Nancy2581

Hi ladies,

I have been on tamoxifen for 2 years and 4 months. On May 17th I had a Pap smear and for the first time ever it came back abnormal. I now have to have a cervical biopsy and an endometrial biopsy. My MO called me and told me to stop tamoxifen. I don't know what's going on, but do know I don't want to go back on tamoxifen. Be vigilant while taking it

Nancy

lala1

ParisParis--- My docs all said it is very common to have high estrodial levels while on Tamoxifen. I also panicked when those tests came back but my gyn wasn't worried at all. He took extra care to keep an eye on me with regular TVUSs. I also had a thickened lining, fibroids and cysts. Eventually it all became too worrisome and I had a total hysterectomy which, for me, was very easy to do and recover from. I'm now 2 1/2 years out and feel great! Don't worry about your levels. Just ask your doctor to keep a very close eye on everything and you can deal with it if/when you need to.

Nancy2581--I've been on Tamoxifen for 4 1/2 years and even having had the hysterectomy 2 years into it, still have regular paps. The latest one this past Jan came back abnormal which is very very common according to my docs. I've actually had an abnormal one about every 5 years as long as I can remember. And after doing a repeat 5-6 months later (to account for shedding of any abnormal cells) all repeats have been normal as was this latest one. And the closer you are to menopause (or actually there) the more often you'll get abnormal paps. So try not to worry too much about it. I've also done plenty of biopsies and found them to be uncomfortable but not painful. I usually pop a tylenol beforehand just to help. Anyway, I know I hate it when people tell me not to worry (because, really!, who can actually stop their mind from worrying if it wants to) but I hope this reassures you somewhat. Also, just FYI, my MO and GYN both said it was totally ok to keep taking my Tamoxifen.

ParisParis

Thank you, lala1! I am glad to read that it is not so freaky after all. What you describe is what I am afraid of, though, I do not want to lose my uterus if I do not absolutely have to.
I do not get a lot of survival benefit from Tamoxifen, 1% after 5 years, 1.5 % after 10 (if I am on it for 5 years). The risk of a local recurrence goes from 1% with Tamoxifen to 2.3% without it. Unfortunately I cannot work out my risk of distant recurrence, as I have only the percentages for the hormone receptors but not the H-score. But I doubt that it would make a huge difference. I wonder if it's worth taking it at all, if it means more surgery etc.
Have other people here stopped taking it for similar reasons?
I have no other side effects so far apart from the estradiol level. My mother was a poor metaboliser of CYP2D6 - so I am not sure if I have functional endoxifen levels.
I will see my gynecologist on Tiuesday, let's see what she says.

stephilosphy00

Hi Parisparis,

Do you have high percentage of ER+/PR+? I do, can I assume I am a good metaboliser of it?

ParisParis

Hi stephilosophy00,

I am 100% ER and 30% PR. The percentage does not tell you anything about your metaboliser status, however.

Tamoxifen is metabolised via the liver, and we need specific enzymes to be able to do it. There is a group of enzymes, the P450 cytochromes that are very important to metabolise all sorts of compounds, among them many drugs. The enzyme CYP2D6 is one of this group, and it is necessary to change Tamoxifen into endoxifen, which is the powerful agent, not Tamoxifen itself. Some compounds, among them some anti-depression drugs, inhibit the enzyme - this is why they have to be avoided.

There are a number of genetic variants of the gene that carries the instruction to make the enzyme CYP2D6. The incidence of these variants in the population varies with ethnic background, metaboliser categories reach from ultra rapid to poor. So far, there are a lot of contradictory research results about whether the metaboliser status influences the effectiveness of Tamoxifen. It is possible to monitor the endoxifen levels in the blood, which Indicates if Tamoxifen is metabolised correctly. There are genetic tests available to determine the alleles (variants) of the CYP2D6 gene, but they are not routinely done.

Nancy2581

lala1 - thanks so much for your response. Yes you definitely made me feel better. You mentioned you had a hysterectomy. Did you decide to have it done or was it recommended?

Nancy

BlueKoala

has anyone had coughing or acid reflux as a side effect of Tamoxifen? I'm going to have to go and get my cough looked at, even though I'm certain it's down to the air getting cooler (this happens every year), plus my crazy tight neck muscles, but there must be something else. The cough is slightly worse after coffee and eating, and a bit intermittent, but I am wondering if it's from the Tamoxifen.

I've just gone off it prior to surgery, so it will be interesting to see if the coughclears up.

lala1

Nancy---In the end my gyn recommended it. He tried to hold off as long as he could by doing a TVUS every couple of months but in the end, he felt that everything needed to go. I fought it pretty hard because I was convinced that since I was 52 and not menopausal yet I would basically dry up into a shriveled hag who sat around getting fat and hot flashing like crazy. He assured me he would not let that happen. And in the end, he was right. I feel great! The surgery was easy and I was home the next day with 3 little incisions in my belly that I can't even find now. I was off RX drugs the next day and off Tylenol the day after that. I got up and walked 4-5 times a day for 10-15 minutes and by 2 weeks I was on the treadmill at the gym, albeit slowly, and totally back to my life at 8 weeks. Now I feel the best I've ever felt because I no longer have periods, mood swings, bloating, cramping, nausea, dizziness, etc. It's certainly not for everyone but for me it was one of my better decisions. And I trust my gyn completely so when he said let's do it, I did it. I will say my first gyn wanted to do it immediately and said it had to be abdominal since I "hadn't had kids". My dad's a doctor and he said that didn't sound right to him so I got a referral from my BS for a 2nd opinion. Haven't looked back since. This guy immediately opted to watch and wait and when it was time, had no problem at all doing it laporoscopically. Gotta be sure you've got the right doctor!!

Nancy2581

Thanks lala1 you've made it sound like a piece of cake lol. Well we shall see what my biopsies reveal and see what my onc says. Oddly enough I'm not even stressed about these biopsies. I think I've been through enough crap so I'm used to it lol.

Thanks again

Nancy

lala1

LOL Nancy....that's what I said when my gyn called me back in Jan to tell me my pap came back "slightly abnormal". Now keep in mind I've had my uterus, ovaries and cervix all removed! He said "This is very common in menopausal women so I don't want you to worry." I told him "I'm not. I used up all my worry 5 years ago on breast cancer!" And you know what? I didn't worry. I waited 5 months for a repeat pap which proved to be normal and during that 5 months I just let it go. Once you do the cancer card, I think all the rest is just "life". Not that I don't worry sometimes that an ache or twinge could be cancer coming back, but what I have learned is that if caught early most can be treated. And if it's bad.....well....I'll just deal with it as it comes!! In the meantime, I'm enjoying the heck out of life which I certainly didn't do properly before!

ndgrrl

Hi, seems I am back on the Tamixofen. So here I am again! 😀I was put into surgical menopause March 2015. Took the dr a year to convince me to go on an Ai. First one Arimedex made me feel 90. Took myself off a month and them went on Femara. 7 months later after blood work and a dexa scan my BP is up,Cholesterol is up and bones are thinning. My new MO said its a matter of quality of life. She said it was up to me if I wanted to continue on any drug. I am a 2013 survivor so not sure why she does not want me on something for at least 5 yrs. she told me I could go back on Tamoxifen if I want. Not sure I like my new MO. She said up to 80% of younger women go off AI's because side effects are worse for younger women. I asked her how much less protection Tamoxifen would offer me than an AI since I am post menopausal. She said there is no way to know that. My other MO said an AI was better and gave me percentages.I am confused