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Timba
Member
5 years ago

Tamoxifen half strength effectiveness?

Seeking thoughts on 10 mg Tamoxifen efficacy versus the recommended 20 mg? Any studies been done on this? My onc has suggested to me that this drug has been around for 30 years with no consideration as to whether the dose befits the women’s size. In other words same dose prescribed for a 52 kilo woman as a 65 kilo woman. One solution to adverse symptoms might be the 10 mg.  Also is it common on this drug waking at 3 am simply unable to go back to sleep. Not worried, not even a busy mind, as if I have lost the ability to sleep. Had to take prednisolone for asthma some years ago. Same bug eyed feeling. Tips on how to cope appreciated. 
  • Hi @Timba

    Tamoxifen stinks for sure and you would think a drug that has been around for decades would have had some side effect tweeking by now huh?.  Not sure how long you've been on it but for me it took 12 months before sleep came back to somewhat normal. 
     I'm not sure about 10mg studies , however, I am a member of a couple of Tamoxifen support facebook pages and the reduction to 10mg seems to be a very popular recommendation for the girls in the States who suffer greatly with SE's on the 20mg..  
    Then there is some study being done on the fact that it you don't have side effects is the drug working properly anyhow?  There's another one about the efficency of 3 months on 3 months off.  I run 3 months on, 1 month off for a reasonable balance.
    Of course, no onc is going to recommend that but mine seems to think it's better than not taking it at all.
    The choices and studies are endless. Damned if you do, damned if you don't and a multitude of confusion thrown in.
    My percentage increase with the HT is also 3%.  All these stats are averages so it could be anywhere between 0 and 6%.  Who knows.  I have spent a lot of time pondering whether it is worth the decrese in quality of life or not given that there is a 1 in 3 resistance rate any way and many people who have done all the right things still have a recurrence.
    So, what to do????  
    Changing brands can help.  I switched from Genox to Novladex after 18 months of hell on the first one.  There was a significant difference.  The SE's did not disappear but did calm down to a more managable level. It might be something to try. 
    It is a choice only you can make whether to continue or not.  If you choose not and it comes back, can you live with that decision?  Will you feel guilty and blame yourself if it returns or will you be satisified in your choice that it could have anyway and you did the best you could.  That is the $64000 question and it is a hard one with no definitive answers.
    Best of luck with your decision lovely.
    xoxoxo


  • Hi again, it might take a few months to adjust to Tamoxifen but perhaps you need to chat with your dr about increasing Endep? I had a lumpectomy and radiation back in 2003 and I didn’t persevere with Tamoxifen because of the side effects. As a result my cancer came back 7 yrs later in the same spot so had to have a mastectomy and chemo. After that,I was determined to take Tamoxifen and I did so for 4yrs.It was beginning to affect my liver at that point so I stopped. I would recommend you have an annual blood test to check liver enzymes and cholesterol as Tamoxifen can affect these over time.Try and give it your best shot as this drug has been around a long time and is very effective against bc.
  • Thanks all for replies to me.  TonyaM your reply was of particularly relevance for me.  Very interesting about the liver connection. Of even greater interest for me was to hear about the Endep. Sadly post surgery (lumpectomy, reduction and re-constructionn all at same time) I developed extreme nerve pain in both breasts. Hurt to breathe, car rides were a nightmare all those speed bumps etc. Went to a pain specialist and he suggested Endep for the nerve pain, didnt realise it was an antidepressant as well. I have been on 5mg Endep post surgery for about 8 weeks now. I am leading up slowly to taking the full dose of Tamoxifen. On 10mg every day now, trying to get to the 20mg. The hot flushes are manageable, about 10 in a 24 hour period but the insomnia is really impacting even with the Endep. As you can imagine quite worried about symptoms increasing once I am on 20 mg, hence my question about 10 mg being effective at all? I have been told by my Oncs (one radio Onc, one medical Onc) that post surgery chance of re-occurence 10 years is down to 10-15%. Post radio it is now down to 5%. with Tam it is down to 2-3%. Makes me wonder if the extra 2-3 % is worth it if my quality of life on Tam its compromised. I want to give it a very good try however. Oh and btw, nerve pain has settled to bearable now but suspect it will be with me for a long time. Endep may be my long term friend!
  • Hi Timba, tolerance and side effects of Tamoxifen may have more to do with each person’s liver ability to metabolize it rather than weight. Many years ago I was asked to join a trial whilst on Tamoxifen and it involved taking blood at various intervals during the day to see what my Tam levels were and how my liver was metabolizing it.They thought some women might need a higher dose of the drug!! I declined as I didn’t want to know if I was one of them! The only way I coped with the hot flushes and sleepless nights was to take a very low dose antidepressant called Endep 10mg — it really helped and I had no side effects from it.
  • Totally agree re sleep disturbance. I tried Circadin 2mg at bedtime. No improvement. Magnesium is good for getting to sleep. Staying asleep is the problem. The cooler nights have helped with the night sweats, at least.