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TonyaM's avatar
TonyaM
Member
11 years ago

4 years on Tamoxifen

I've been on Tamoxifen for 4 years now. However, to be honest, I stopped it several months ago for a break.

I've done this before and inevitably, I get some spotting which leads me to have a pelvic ultrasound. I also needed a well overdue pap test and routine blood tests. Now don't you just love it when you go for routine checkups and come out with all sorts of issues you never knew you had!

Now it is at this point I'm going to blame it all on poor ol Tamoxifen. I have found out a few things that it can do to you over time. I sure wasn't told about it at the start of taking this drug. One of my liver enzymes was raised and I now have a fatty liver.

I rarely drink alcohol so my gp is putting it down to Tamoxifen. I also have changes in my Endometrium(cysts) which is a "given" when you are on Tamoxifen apparently. My hair started thinning which is another Tamoxifen treat.

So I am blogging about these issues, not to alarm, but rather to make you all aware that Tamoxifen MAY cause changes to your liver and uterus over time.

I think we should have yearly blood tests and pelvic ultrasounds and possibly abdominal ultrasounds. A fatty liver can lead to a chronic inflammation condition which could then cause liver impairment.

This is enough to make me question whether to keep taking this drug for another year. Back in 2003,Tamoxifen was usually prescribed for 2 years. Now it's for 5 years with a view to increase it to 10 years. I know it's a very effective drug against hormone positive breast cancer but I worry about the long term side effects.

Is 5 years on Tamoxifen going to impact on my health? Just at a fork in the road.

Hugs to all who are online tonight. xxxx

tamoxifen

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  • June1952's avatar
    June1952
    Member
    11 years ago

    Thank you, Tonya, for raising this issue.

    Yes, it is fine for them to say the benefits outweigh the bad bits but it is not them having to deal with it all on a daily or long-term basis, eh ?

    I see an oncologist next week and have been trying to find out more of the long-term effects of the drug before I go.  My surgeon did not seem at all impressed with hormone therapy so I will have to listen to the oncologist and ask heaps of questions.  As you say, 2 years is one thing but 10 ?????  Sometimes I feel the medicos just keep things going for the sake of the pockets of their mates and chemical companies !

    The alternative drugs are no better for my circumstances.  I do have severe arthritis and will need knee and hip replacements (surgeon wanted to do knees 4 years ago) so the idea of possible osteoporosis does not appeal !

    If anyone else has some info for us all it would be appreciated.

    Hi Robyn - good to see you still posting regularly.  You are always so helpful and positive.

    Hope all are feeling well and happy on this glorious day in Victoria.

    Summer

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    Hello Tonya.I was reading up last week on side effects,and apparently,a fatty liver is not that uncommon.Isnt that what a person who drinks too much alcohol can suffer from? My oncologist does send me for an internal ultrasound every 12 months.I had one at the beginning,and I have another one booked just before Christmas.In the beginning,I didn't think a lot about side effects,but lately I am starting to think that if you stay on these types of drugs long enough,it seems that you will get some sort of side effect.Like you said,it used to be a couple of years,and now they are stretching it out to 10!!!!This is a good subject,and definitely one that I feel we aren't really told much about.Cheersxox Robyn
  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    Hello Tonya.I was reading up last week on side effects,and apparently,a fatty liver is not that uncommon.Isnt that what a person who drinks too much alcohol can suffer from? My oncologist does send me for an internal ultrasound every 12 months.I had one at the beginning,and I have another one booked just before Christmas.In the beginning,I didn't think a lot about side effects,but lately I am starting to think that if you stay on these types of drugs long enough,it seems that you will get some sort of side effect.Like you said,it used to be a couple of years,and now they are stretching it out to 10!!!!This is a good subject,and definitely one that I feel we aren't really told much about.Cheersxox Robyn
  • nicole_h's avatar
    nicole_h
    Member
    11 years ago

    Hi Tonya, Omg!!!! I have been trying to find out more about this drug since i was told over the phone to go on it without any consultation but  was concentrating on the current side effects. The long term ones were glossed over with the benefit far outweighing the risk. Good luck to you and thanks for the heads up.I started it 3 days ago. My oncologist has some serious questions coming his way.  Nicole