Aromatase Inhibitor and just walking away.

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  • dtad
    dtad Member Posts: 2,323
    edited April 2016

    claire....just wondering who told you about the fat helping absorption? Why isn't this general knowledge? Ive often wondered about how they can tell if its absorbed and metabolized well. Since most docs do not test hormones during treatment anything that can help is great!

  • Ade
    Ade Member Posts: 740
    edited April 2016

    claireinaz my biggest concern with the hormone therapy is the depression craziness that I had upon surgical menopause in my 30s and last month with the Letrozole...which I stopped taking. Do you think those things - Theanine and 5 HTP - would help prevent the mental thing? I have never had a problem with depression otherwise and am fine now off all meds....but will need to try another when I go back to the Dr Thursday. What do you think?

  • tangandchris
    tangandchris Member Posts: 1,855
    edited April 2016

    I had mood issues on Tamoxifen...to the point of really dark depression and not being able to cope. I knew it was the Tamoxifen and I just couldn't deal with it anymore. I changed MO's and told him that I couldn't do, I was off of it for 4 months and he suggested that we try hysterectomy and an AI. It seemed extreme, but after careful consideration I did just that and am taking Femara now. I haven't felt the horrible crashing depression or anxiety like the Tamoxifen caused, but I do have massive joint pains.

    These are hard decisions, but for now I'm going to stick with the Femara until I just can't anymore. I also take an anti-depressant and have for 5 years even prior to dx.


  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    Ade, please try adding magnesium!!! I'm not the only one it's helped on this thread. Hugs to you..

  • Ade
    Ade Member Posts: 740
    edited April 2016

    barbe1958 I am on a really good slow release magnesium twice a day but will try stepping it up as it says you ca take 4. Thanks! Hugs back at you! :O)

    tangandchris Isn't it funny that it was the Femara that gave ME the horrible results! We're all so different. I read that Femara is the most effective medication and it was fairly cheap. . .I just can't take it. Will see the Dr. next week for an other to try.



  • tangandchris
    tangandchris Member Posts: 1,855
    edited April 2016

    Yes, it is crazy how we all react differently to drugs. Now I hope I haven't jinxed myself :):)

    I'm going to try magnesium as well.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Ade, sometimes the SEs let up after you've been on the AI for a while. It might be worth giving it a few more months to see if the situation improves.

    I had a few really dark, down-the-rabbit hole kinds of days out of the blue when I first started Femara (say, the first month) but haven't had the same type of response since then and my MO and BS have both told me that side-effects can let up once the body (or brain) adjusts.

    Good luck, whatever you work out.

  • Ade
    Ade Member Posts: 740
    edited May 2016

    Hopeful82014 I started taking Letrozol in January (bilateral mastectomy was end of December) and seemed ok until 2 weeks ago and it became unreal! Body pain and severe depression like PMS on steroids! I couldn't even think straight. I wasn't suicidal but thought that to check out would be a relief! I would be terrified to ever go there again. Shouldn't I have had the SEs up front and not after 3 1/2 months? I know SO little about these things yet. Hoping to start another med (maybe Aromasin?) soon. Thanks for your post.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    Ade, who knows? As timelines go, you're still in the early days of your AI treatment. I hope you do find one that you're ok with.
  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    I was just at the doctors and picked up a booklet on bone health in the waiting room. We should all be taking at least 1,000 units of vitamin D, 1,200 mil. calcium, and 420 mg. magnesium (which is necessary for calcium transport). I knew about the calcium and vitamin D, but not about magnesium, so I am definitely going to get some and start taking it. (I am done with my 5 years of Arimidex but noticed Barbe's post about magnesium.)

  • flowergrl63
    flowergrl63 Member Posts: 10
    edited May 2016

    Don't forget gals that magnesium can also loosen the bowels! That's why I love it for my irritable bowel syndrome, but others might be caught by surprise.

    Peace

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    I take a lot of narcotics so I use Sennokat-S every day. It's non-addictive and the S part is the stool softener. Have been using it for about 8 years now and find the magnesium helps as well.

  • dAd
    dAd Member Posts: 94
    edited May 2016

    Obviously everyone has to make this decision for themselves. My MO wants me to take Letrozole with monthly IV infusions of a drug to prevent bone density loss. However, after doing thorough research of these drugs with respect to probable and possible side effects, I have decided to take my chances and refuse both medications. My primary concern is quality of life and I'm just not prepared to take any more risks with that. I'm Stage 3a and if there is a recurrence, I will take the consequences.

  • nancym712
    nancym712 Member Posts: 51
    edited May 2016

    take magnesium glycinate as it is absorbed best. My naturopath says take as much as your digestive system will tolerate. Take it at night as it helps with sleep.

    Good luck

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    Thanks for the info nancym!

  • taag4
    taag4 Member Posts: 100
    edited May 2016

    Ade I too could not take the letrozole. Believe me I tried for three months then that was it. Next my OC had me on Aromasin which caused numbness and tingling. After trying that for three months I moved onto anastrozole which I guess has been the best of the three. Still don't feel like myself with body aches and pains, and having to push myself to get out and do the things I no at one point I loved doing. I was told I would be on these drugs for five years, but now worry I see some people posting they are changing it to 10 (maybe thats only in the US wasn't paying attention as to where the posts were coming from) I look forward to the day I can stop. There are days when Im still feeling really bad and think this is it no more. Then the next day Im feeling a little better and pop another little pill.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    I walked away from exemestane.

  • 7of9
    7of9 Member Posts: 833
    edited May 2016

    I switched makers for my AI and found TEVA works the best. I will be taking an IV infusion to prevent bone loss as my scan last year was normal and my onc is going to put up a fight to keep me there plus the infusion can cut the risk of bone mets. I have a six year old so it's all in for me. I do take Ambien (ever since orig diagnosis 4 years ago....looks like I'm a lifer though I get down to 1/2 pil sometimes) and I keep a stash of attivan as needed. Lots of exercise and prayers. Good luck to you either way you go/decide. It's a very individual fight and decision.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2016

    The TEVA brand of Anastrozole lessened my joint pain from about an 8 on a scale of 10 to a 2! It was miraculous for me. I told my

    Onc and he had me tested to make sure it was working! Also, magnesium has been a huge help to me.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    I can't stress enough the difference that Claritin makes for me! I have to be on "something" for life now so I really needed to find something that worked and it does. I was a NON believer and figured it was a waste of money as Claritin isn't cheap but honestly ladies, it has saved my sanity. I already had enough pain with my horrid skeletal system a FM so something had to work.

  • kmpod
    kmpod Member Posts: 234
    edited May 2016

    Barbe, Claritin has been essential for me in managing the bone pain associated with Arimidex. I'm within spitting distance of my five years and it's been tough to hang in. I honestly don't think I could have lasted without it. The name brand Claritin is expensive, but I've found the generic, Loratadine,to be just as effective and less costly. I'm in Ontario too and I find it at the local Pharmasave.

    The other thing that has helped in keeping me mobile is acupuncture. I get a treatment every two weeks. If I go longer between visits the stiffness returns big time.


  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    OOOooh, thanks for reminding me of it being Loratadine!!! I must remember that when I get the new ones. I'd noticed that was the active ingredient and told DH to get it when he refills my meds but I'd forgotten about it so surely he must have, too! I must admit, Claritin does nothing for my allergies, though!

  • Dice
    Dice Member Posts: 1
    edited May 2016

    stage 1a breast cancer..dual mastectomy followed by reconstruction. Mother died of a stroke. I have had a complete hysterectomy and I'm 70 years old. Started taking Arimidex a week ago. Terrible allergic reaction....itchy welts all over my face and neck. Has anyone else had an allergic reaction? I think with my history I should just forget taking hormone therapy

  • GG27
    GG27 Member Posts: 2,128
    edited May 2016

    Dice, I have had allergic reactions to different manufacturers. You could try a different brand or even try tamoxifen. Talk to your onc & but if you're having what sounds to me like an allergic reaction, you should not continue with it til you talk to your Dr.

    BTW, welcome to BCO, sorry you have to be here, but you'll get support & answers that you need. GG

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    for about one week my tongue felt fat, I think it was a reaction. My oncodx said he never heard of that side effect so I kept taking it.

  • Kaneli
    Kaneli Member Posts: 100
    edited May 2016

    KMPOD, That's great news about the clairitin. I take it pretty regularly anyway, since my sister has cats, and I have allergies! Is it the regular Clairtin or is it the Decongestant?

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    Kaneli, I've heard it doesn't matter which Claritin. I used the regular but then have to take a decongestant for my allergies! Go figure...

  • kmpod
    kmpod Member Posts: 234
    edited May 2016

    Actually, I believe it is important to take the Claritin without the decongestant. My allergist, when I told her what I was taking and why I was taking it, advised me to use only the one without the decongestant. She also added that, of all the OTC antihistamines, Claritin is the only one that is OK for long term use. I checked with my MO about its use too and he had no objections to me taking it.

    By the way, she was surprised when I told her that I was using it for bone pain associated with the use of AI's. She hadn't encountered anyone using it for that purpose before.

    I was seeing her for a penicillin challenge test and had to discontinue the Claritin for 2 weeks prior to the test. Within a few days of discontinuing the med the bone pain was back, keeping me awake at night. When I was able to resume taking it it took another few days to quell the pain again.

    Why it works (for at least some of us) is a mystery but after my experience I have absolutely no doubt that it works for me.

    I should say that it's effective at diminishing the bone pain (I didn't even know what that was until I started the AI) but the joint pain, not so much.


  • Kaneli
    Kaneli Member Posts: 100
    edited May 2016

    KMPOD, Do you take the Clariton 1x per day?

  • kmpod
    kmpod Member Posts: 234
    edited May 2016

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