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Tamoxifen - a good thing?

User
Posted 27 September 2017 08:18:54(UTC)

Hi all

Following lots of treatment, I am currently on Bicalutimide 150mg for two years.  At the start of this treatment, I received RT to my chest (10 mins each side) as a preventative measure to stop breast growth and breast pain.  unfortunately, it didn't seem to work - growth and more significantly, pain have occurred anyway.  I spoke with the PCUK nurses, who suggested Tamoxifen as a potential remedy.  For those who have not come across this before, it is a hormone treatment most commonly used in treating breast cancer and works by blocking oestrogen, in much the same way Bicalutimide blocks testosterone.  It seems that our bodies have a constant struggle for dominance between the two hormones, so when Bical blocks testosterone, oestrogen takes the upper hand and manboobs ensue.  Something like that anyway.

So I have read lots about Tamoxifen, the most useful report being https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-96  From what I can deduce from this, it seems more efficient than chest RT in avoiding breast problems.  So I wonder why my onco didn't take that approach to start with?  There seems to be a question about long term use of tamoxifen, but two years doesn't come under that heading.

Armed with my knowledge, I asked my onco for a prescription of Tamoxifen and explained my thinking.  She OK'd this, and prescribed my 10mg daily.  Strange, as the report states that 20mg daily is notably more effective.  I guess some of this is down to how different trusts around the UK take different approaches, and it's often down to us punters to do our own work. PCUK nurses are great!  Also of note, my GP told me that 28 days of 10mg Tamoxifen costs around £50, whereas 28 days 20mg Tamoxifen costs about £2.40.  Strange world!  A pill cutter costs £2...

Side effects/adverse events:  Seems that an mild extra level of fatigue and possible hot flushes are the main concerns, and even then not as likely as with some of the other meds we get to take.  Apparently it doesn't reduce boob growth, but does stop the pain.

And finally, I get to my questions.  Have any of you fine people out there had any experience with Tamoxifen, and if so, would you be OK to share?  I promise to keep this thread updated with my progress.

Many thanks

Graham

User
Posted 27 September 2017 13:09:43(UTC)

Hello Grahamt.

I just put Tamoxifen in the search box (the one that says "show search") and a couple of posts come up. They might be of use while you are waiting for answers.

Hope so anyway.

We can't control the winds - but we can adjust our sails
User
Posted 27 September 2017 14:49:34(UTC)

I was on Bical 150 mg for a whole year. My Onco prescribed 20 mg Tamoxifen once per week. No moobs nor pain at all. I was 48 yrs old.




If life gives you lemons , then make lemonade
User
Posted 27 September 2017 20:28:58(UTC)
Hubby has moobs as a result of diethylstillboestrol (also an oestrogen drug), he was never given the RT but has been on tamoxifen for quite a few years now, it hasn't affected the size of the moobs but has mainly stopped them hurting.

Cheers
Devonmaid
User
Posted 25 October 2017 13:35:45(UTC)

one month in, here's an update on the Tamoxifen experiment. I've been taking 10mg daily, and it's really only on the last week to ten days that significant differences are happening. No more discernible growth, and the pain has decreased notably. There is still a sharpish tenderness just in the nipples, but no longer in the surrounding area.

Interestingly, I am now getting the hot flushes. Bizarre!

User
Posted 25 October 2017 13:46:19(UTC)

Maybe ask about the once per week 20 mg dose ??




If life gives you lemons , then make lemonade
User
Posted 01 December 2017 09:55:21(UTC)

Hi all

Last update on my personal Tamoxifen trial. I've been on Tamoxifen 10mg daily since the end of September, and will continue to do so while I'm also on Bicalutimide 150mg daily. No more breast pain, which is great as my 10 year old daughter can now take flying hugs at me without me curling up in agony! No more growth, good for self image. Hot flushes have pretty much gone altogether. No other side effects to report.

I have done more reading into Tamoxifen, and found the following more recent paper: http://journals.plos.org...371/journal.pone.0136094

So it seems that Tamoxifen is more effective than radiotherapy, which begs the question why many oncos appear by default to recommend radiotherapy for gynecomastia. I would suggest that if any of you unfortunate chaps find yourself in the same situation (courtesy of Bicalutimide), it is very worthwhile discussing the tamoxifen option with your onco, and maybe present the reports in this thread.

Good luck all, keep strong.

Thanked 1 time
User
Posted 01 December 2017 21:41:52(UTC)

Postcode lottery again - John was refused both :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


 
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