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Jane221's avatar
Jane221
Member
11 years ago

From Tamoxifen to Arimidex

Hi all, after being on Tamoxifen for over 2 and a half years and experiencing all the fun of being thrust headlong into menopause including intense and (for the first 6-12 months) seemingly constant hot flushes, night sweats and aching joints, my oncologist is moving me on to Arimidex next week, as switching over from Tamoxifen to Arimidex (or similar) has been shown to improve overall survival rates, especially for women with hormonally sensitive breast cancers. Now, don't get me wrong, I'm all in favour of anything that might improve my odds, but I do have two concerns with this move, the first being that bone density scans show that I have borderline osteoporosis (although the latest scan shows that this has stabilised in the past 12 months), and Arimidex is known to cause bone thinning and was the main reason I have put off moving on to this drug before now. However, my oncologist has also arranged for me to receive a weekly dose of Alendrobell (Fosamax) to hopefully offset any further bone loss issues, although, once again, some of the side effects from this drug seem to be a bit worrying. My other concern is, am I likely to enjoy a repeat performance of all the other side effects I had on Tamoxifen (hot flushes etc) that have really only settled down in the last 12 months? I did ask my oncologist this question but she was pretty non-committal and I guess as it is a different type of drug and we all react differently she can't really predict my individual response...She did reassure me though that if I'm not coping, I can switch back - possibly a case of better the devil you know?:-/

Anyway, it would be good to hear from others who have made the switch from Tamoxifen to Arimidex, or one of the other aromatase inhibitors, and to hear how you have fared with the switch. I'm really hoping it's not a case of "out of the frying pan and into the fire"!    

Cheers, Jane    

tamoxifen

8 Replies

  • mum2jj's avatar
    mum2jj
    Member
    11 years ago

    Hi Jane, can't help with the AI's due to being triple neg. I do however post chemo have osteopenia, almost osteoporosis. I was initially put on  fosomax, I had quite bad reflux with it(suffer from relax anyway) so I have an infusion called Aclasta every 12 months. My bone density did not actually improve on it but my Dr said that it may have been a whole lot worse without it. I had no side effects from it. There is also The injection that I think Robyn is talking about which is called prolia. Not sure about side effects with that. I think I discussed changing to it but was put off by potential side effects. Can't remember what they are. Robyn have youx had any?  

    Good luck. 

    Paula x

  • Jane221's avatar
    Jane221
    Member
    11 years ago

    Hi ladies, just wanted to thank you all for your comments, I appreciate hearing from you all. I really hate the choices we get to make don't you, and I'm still feeling nervous about switching over, but as the rest of my medical team all think it would be beneficial to give it a go I guess I can only see how it all pans out. With any luck it will be all OK, I'll certainly let you know. Hope you are all doing well. Thanks again, Jane xx

  • Jane221's avatar
    Jane221
    Member
    11 years ago

    Hi Nicole, hope you don't mind me butting in here but I think it would be a good idea to have a chat with your oncologist about whether you need to get a bone density scan at some stage. I was only sent for this scan last year when my onc first started talking about moving me on to Arimidex (as I was by then post menopausal). As Arimidex is known to cause bone thinning I believe it's pretty standard to get a bone density test before going on to it. I take a daily Vitamin D supplement as recommended by my onc as my initial levels were low when first diagnosed (over 3yrs ago), but have now climbed right up. I also take magnesium to help with the joint / muscle aches and pains, which I mentioned to my dr last time I saw her and she was OK with that. Hopefully when you see your oncologist next they will give let you know what is best to do in your case - but those questions are all very valid. Best wishes, Jane xx

  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    Hi Jane, I didn't actually switch, I started straight on Arimidex and I did have a bone density test to use as a baseline. I have osteoporosis and have an injection every 6 months.I also take Vitamin D and calcium tablets.  I was very concerned about the possible side effects of Arimidex, but as with everything, guess we just have to weigh everything up and make these hard decisions. I was already getting hot flushes and these did intensify slightly on Arimidex. Apart from this and maybe a bit moody at times, I haven't suffered any short term hassles. Hope it goes well for you,

    Hazel xx

  • Mozzie_Bear's avatar
    Mozzie_Bear
    Member
    11 years ago

    Hi Jane, I have just started arimidex so it is pretty early to comment on side effects.  I had bone density scanning which showed I'm in the low end of normal and am taking vitamin D as that was also the low end of normal but I am 58 and started menopause in my fourties following a hysterectomy.  Arimidex should give me improved prospects over tamoxofin so I hope to stay well on it.  I am very tired but that is probably all the other treatment. Good luck with it and hope all goes well.  Maureen

  • Janet_Plummer's avatar
    Janet_Plummer
    Member
    11 years ago

    Hi Jane, I too have been on tamoxifen for about 2.5 years and it has been suggested to me that I switch to an AI. I have been reluctant to make the switch though because I haven't had any major problems on tamoxifen - mild hot flushes, hair not as thick as it used to be is about it. Also I've read a lot of posts here and elsewhere from women on AIs complaining about aching bones and joints and feeling like they are 20 years older. And libido?  You can forget about it apparently. I realise there is a slightly greater decrease in recurrence risk with an AI and that tamoxifen has it's risks too but when I weigh it all up tamoxifen looks better to me. I know I have to accept being getting older but the idea of blocking all estrogen production in the body seems very depressing to me. Yes I'll be 50 soon but I don't want to feel 80. However, I haven't actually tried it so maybe it's not as bad as I fear. Would be very interested to hear from you if you do make the switch. 

  • nicole_h's avatar
    nicole_h
    Member
    11 years ago

    Hi Robyn,  I started tomoxifen today. I haven't had any tests or scans to check my bone density. I have had 2 rounds of chemo & 33 rt's. Do you think I should to at least have a base line? Are you taking any supplements ie vitamin d calcium magnesium etc? Curious nicole x

     

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago

    Gosh it's hard to know what is best isn't it?I am on Tamoxifen because my osteoporosis is advanced.I have 6 monthly injections,and in 3 weeks I will have a test to see if things have improved.My oncologist said if they have,she may switch me,but she also said,the difference is really minimal .I am happy on Tamoxifen now,side effects have stopped,so I think that I will just stick with the devil I know;) I am interested to hear how you get on.Cheers Robyn xox