Starting Tamoxifen - Spring 2015

I think she means that if you are pre- menopausal, you have the option of Ovarian suppression (OS) (via surgery or a drug like Lupron) then you can take the newer generation AIs. Forgive me if I'm butting in where I wasn't asked.

I thought I'd add my 2 cents worth on my Tamoxifen journey. I had diagnosis and surgery in January, and was told I would have chemo, then radiation, then hormone pills for life. Then during the post surgery scans, a couple of small bone mets were discovered on my hip, and I went straight to Stage 4. My chemo (and port installation) were cancelled at the last minute, as "that would not save your life, you are incurable" and I was told to take this little pill (Tamoxifen) every day instead, until my bone mets started causing pain.

As you can imagine, I went into shock at being written off, having lifesaving chemo ripped from me and given this little pill instead. Especially when I started this little pointless pill with no side effects - indeed, no visible effect at all.

I started Tamoxifen in March, and after a month or so started getting "warm flashes" - just mild ones. My family are getting used to me saying "is it getting warm in here or is it just me?" I am 2 yrs post menopausal but one of the indicators was only just below the limit, so they decided as I was still producing a small amount of oestrogen, that Tamoxifen would be better than AI's.

I have now read up a lot more on Tamoxifen and Metastatic treatment, and I finally agree that it is the first line drug of choice, but I still don't understand why they don't check for mets before starting chemo. I have not yet had any followup scans to see if it is working - hopefully some time in June.

Just this past week I have been getting quite dizzy - like I have just stepped off a violent rollercoaster. Has anyone ever heard this as a side effect of Tamoxifen, or is something else going on?

I went to my family doctor yesterday, and she says it's benign vertigo. I have no headache or earache so she doesn't think its a tumour or ear infection, She has given me Antinaus - Prochlorperazine Maleate, which should stop the world spinning, but may make me drowsy (not so far). She will also write a note to my oncologists, so they can do further tests when I see them later this month. I can't drive in this state, so I'm curled up at home waiting for the rollercoaster to stop.

I'm starting Tamoxifen today. Very nervous. I've been staring at it all day, haven't taken it yet.

BBwithBC45 - I FINALLY got brave enough to take 1/4 of a pill last night for the first time. My onc said to take it once a day but I've read others breaking it up and tapering. So I chose to do that. It's been one day, no side effects yet. I didn't sleep well but not sure if that was the anxiety.

eheinrich - I have a strong history of depression too but haven't been on meds in a few years. I am terrified of the depression and mood swings too. I normally would take Zoloft but now I can't do that since it's an inhibitor. ugh.

BB, Eileen, and KSusan- so nice to meet you in a different bar!

I think when I start ( I'm a few months off yet) I will taper. That seems to help me with any kinds of meds I take.

I too have had what I thought was really bad depression all my life. But finally figured out when life got TOO GOOD that I instead am Bipolar I. In order to keep meds intake to a minimum on chemo (mostly to manage liver enzymes) I have been living on the blade of the knife these last six months since surgery, under-medicated. I will definitely have to monitor myself very carefully and possibly tweak meds if the mood swings etc from the Tamoxifen affect me much. I don't have much margin of error, bring at times a full fledged Whack job

I'm one month in on Tamoxifen and I've noticed my skin is much more sensitive to the sun. Has anyone experienced this? I swear there are 800 SE listed for this drug and I want to believe everything Im experiencing is NOT a SE!

One more thing...I know someone who was taking tamoxifen and she ended up getting uterine cancer and had to have hysterectomy. This certainly scares me because I dont know what the percentage of women whoget uterine cancer from this drug.

Yes, the risk is incredibly small. And there has been no evidence of increased risk with premenopausal women. Not sure it you are pre or post meno.

Thanks guys!! I am seeing oncologist for the first time since my surgery April 29th. I has BMX with TEs (which I hate). Hopefully he will have my onco results. I am er/or+her- and my tumor was 1cm. I am assuming I am grade 1. I am post meno

Hey Shelleym,

Maybe it's all in the mind? Every little twinge or pin prick of pain, and I think, "Blood Clot!" My knees hurt in the middle of the morning after absolutely no exercise and I'm like, "Knee Pain!"

Geez...this is so mental.

Hi BB,

I too had blood clots previously and MO said' okay well then no tamoxafin for you'and instead did Lupron for ovarian shutdown and femera and she said that it is a better way to go anyway with my treatment. I would not be risking the tamoxifen with blood clots for myself so i would urge you to seek another opinion. Thank goodness there is another option with less risk of clots.

Hi Snowgirl,

Thanks for your reply. I have been told that they won't do any radiation on my hip until it starts to cause pain, and won't get a scan until the end of the year. My MedOnc says it's too early to tell if the Tamoxifen is working - is that true?? He says that it can take 6 months for its effects to kick in and start working on the tumor, so there's no point in giving me any scans until Xmas. And my RadOnc doesn't want to touch my hip because you can only have radiation once in an area, and I might need it more later.

With all the uncertainly, and badly delivered diagnoses, I now have PTSD, and am waiting for an appointment with a psychiatrist. I suspect the dizziness/vertigo is part of that, as is the inability to concentrate or remember, and my compulsory 2 hour naps every afternoon.

At least I am in no physical pain at the moment, but for how long that will last is anybody's guess. My blood tests in June all came back normal, and I won't see my Onc until September, so I just have to learn to cope with the new normal - whatever that is!

hi all

I am 49 started tamoxifen in January 2014. I spent a month worrying. I had trouble sleeping for about 3 weeks. And periodically I'll get killer calf cramps. I do get a hot flash now and then, they last 2 minutes and done. I get a few more if I don't exercise.

So I really think this is the easy part of the adventure. I had horrible hot flashes during chemo but never had a period after chemo (18 months and counting).

If tamoxifen turns out to be awful, you have the opportunity to stop. But with its effectiveness I think you have to try, especially if you are already thru chemo and rads. I went thru both and didn't think I could live with myself if I got a reoccurrence and decided not to take a pill every day.

Exercise, eat right, take care.