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Life on aromasin

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Comments

  • chisandy
    chisandy Member Posts: 11,408
    edited November 2015

    I’ve been using melatonin (3 mg) for decades, ever since my first trip abroad when it was recommended to help trick your body into fighting jet lag. One time in Switzerland our son was still on Chicago time our first night there--gave him 3 mg; he slept like a baby and had no jet lag the rest of the trip. I also take a generic Unisom sleep tab (OTC, doxylamine succinate). Their sleep gels are diphenydramine (generic Benadryl, which I’d rather not add on top of the Zyrtec). I get more natural sleep with doxylamine than I ever did on a benzo such as Xanax, Halcion or Valium. Some have suggested that melatonin has anti-cancer properties, but I’m somewhat skeptical.

  • lago
    lago Member Posts: 11,653
    edited November 2015

    ChiSandy I'm in Chicago are you in the city too? PM me

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited November 2015

    Hi Everyone,

    I switched from Tamoxifen to Aromasin last week and I am watching and waiting for side effects. So far I'm only experiencing significant sleeplessness. I am wondering about how long it took you to experience joint pain, hair loss, weight gain and and of the other fun stuff that can happen.

    Thanks!

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2015

    For those of you that have taken a break from the AI's, how long before you noticed a different in the way you felt?

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited November 2015

    Warrior Woman,

    If you don't mind my asking, why did you switch from tamoxifen to aromasin?

  • lago
    lago Member Posts: 11,653
    edited November 2015

    LindaKR I took a break from Anastrozole before I switched to Exemestane. I noticed a big difference in 2-3 days but I do believe Exemestane stays in your system longer.

    Warrior_Woman Anastrozole the SE were about 3 months. On Exemestane I had fewer SE but probably about the same. Don't assume you are going to get SE. My lashes actually are fuller on Exemestane than they were on Anastrozole

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2015

    Thanks Lego..I've been off 5 days..no difference.

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited November 2015

    Hi lago - I am not assuming SEs but I am anxious. I do not want to deal with hair loss again or anything else as I'm trying to piece my life bak together. Fingers crossed.

    Wildflower - I switched from Tamoxifen to Aromasin for 2 reasons. First, I have mutations of the NF1 gene and it's unlikely I got benefit from Tamoxifen so they waited for post menopause and switched me. Second, the combo of starting on Tamoxifen for a couple of years and switching to Aromasin for the duration has proven highly effective in the studies.

    I am wondering about the timing of side effects for others on Aromasin. How long before you started to notice them?


  • lago
    lago Member Posts: 11,653
    edited November 2015

    Hair might thin. I had an issue with receding hairline before diagnosis so I do use men's Minoxidil 1X a day. I have a l ot of hair so if my hair thinned it's hardly noticeable.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited November 2015

    Warrior I too switched from tamox to aromasin after 3 years and have been on aromasin since August . I am experiencing the so-called mild joint pain which is most heightened in the morning when I get out of bed but not severe. No hair thinning.

    Best wishes


    Susanna

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2015

    Warrior - no hair thinning for me either.

  • claireinaz
    claireinaz Member Posts: 714
    edited November 2015

    My hair isn't thinning, but I take biotin every day. However, I had just had my yearly blood test done, and my bad cholesterol has jumped from 100 to 162 in a year--I've never had high cholesterol, nor has anyone in my family. My GP isn't worried since my good cholesterol is nearly 100 as well, but ... damn this drug and its side effects. We use it to keep from dying one way, and endanger ourselves in other ways.

    I, however, will not take one more drug to mitigate side effects of aromasin. I'll go off it before I do that. GRRRRR.

  • lago
    lago Member Posts: 11,653
    edited November 2015

    claireinaz I am on 2 additional meds due to SE of Exemestane (one for bones). being considered high risk for recurrence I'm willing to do it for at least the full 5 years. Will be discussing next 5 in the spring

  • april485
    april485 Member Posts: 1,983
    edited November 2015

    Warrior Woman, I felt side effects from exemestane in about 3 weeks from beginning it. I am willing to put up with them though. The alternative scares me too much and switching might happen (to Femara) next month when I see my MO. I will be taking one AI or another for the full five years.

    Linda, I felt better within about 2 weeks of going off for my 3 month holiday (which my MO asked me to do). I did not completely escape joint pain the entire time though so have decided that a bit of that is from normal aging. I did drop a few pounds which was great! But, when I went back on after my holiday, the tough joint pain was back in just a week or so and I realized that although I have osteo-arthritis, it is definitely worse when on the exemestane, particularly in my knees, hips and feet.

  • Pheasantduster
    Pheasantduster Member Posts: 1,986
    edited November 2015
    I had strong joint pain also after three weeks on exemestane - after month break off of letrozole. Was on letrozole for almost a year. I did try going back on the exemestane but then had stomach pains! No sure I want to continue any meds. Right now coping with neck problems, pinched nerve, disc degeneration etc. I can only cope with one thing at a time. Waiting for results of recent Bone Density X-ray - I'm sure not good.
  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited November 2015

    Thanks everyone for the information. I am hoping I tolerate this well as it's my best shot at avoiding recurrence.

    I've been to my MO several times before starting Aromasin complaining of bone pain. It was just recurrence scares. I've bothered him with all sorts of things that I thought were recurrences. And so, does anyone know how we distinguish joint pain as a SE of Aromasin from bone mets?

  • marijen
    marijen Member Posts: 2,181
    edited November 2015

    Alkaline Phosphatase lab test? Other symptoms beside bone pain. You can search bone cancer symptoms?

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2015

    april485  Thanks for the info, it helps to know.  Really afraid I won't want to go back on.  I think that I'm starting to have a little less pain, but it's only been a week.

    Linda

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited November 2015

    Thanks Marjen. I don't think I'm alone with the fear that every ache and pain is something terrible.

  • Leslienva
    Leslienva Member Posts: 343
    edited November 2015

    I'm on percoset for the pain from my implant exchange and it's working really well on my aromasin joint pain! I've been able to walk without pain for a week now! But I'll be going off the percoset this weekend so I'm sure the joints will start hurting again...

  • lago
    lago Member Posts: 11,653
    edited November 2015

    Just an FYI. I do exercise daily. I know for many of us keeping active keeps or reduces the discomfort. Just like exercise/movement helps arthritis.

  • elainetherese
    elainetherese Member Posts: 1,635
    edited November 2015

    I find swimming to be useful in keeping my joints limber. Also, after I had my lymph nodes on the right side removed, swimming helped me to regain my range of motion in a relatively painless fashion. By the way, I am not a very competent swimmer and never really learned any strokes other than the crawl and the modified back stroke. I just do my laps the best I can.

  • cajunqueen15
    cajunqueen15 Member Posts: 689
    edited November 2015

    Hi all! I start ai's after my ooph this spring. Is anyone taking them with Everolimus? I'm going to be participating in a clinical trial. Thanks!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited November 2015

    Suggestion for hair care - When I did chemo I used the cold caps to limit hair loss. I learned from the women that in addition to biotin, liquid silica is clinically proven to help restore hair. It worked wonders for me during chemo. In fact, it worked a bit too well. I'm hairy all over but that I can live with. And so, I want to offer that suggestion. Make sure to use the liquid form and not the pills. The liquid is what works.

  • Leslienva
    Leslienva Member Posts: 343
    edited November 2015

    CajunQueen--What is Everolimus?

  • cajunqueen15
    cajunqueen15 Member Posts: 689
    edited November 2015

    It's a drug they currently use for metastatic patients. They are testing it on early stage ER+/Her2- patients in combo with ai's to see if it lowers recurrence rates. Unfortunately one of the side effects is...you guessed it, joint pain!

    Per my MO bone pain that cannot be relieved by OTC pain meds, is chronic, and wakes you up at night warrants a PET scan.


  • Leslienva
    Leslienva Member Posts: 343
    edited November 2015

    Cajun Queen: I already have the joint pain! But it's usually not bad enough to even take OTC meds for. I just do a lot of walking. I will say the pain killers they gave me for the implant exchange surgery did work great in alleviating any joint pain. They didn't do much for the implant pain, tho.

    Is it given in pill form or injection?

  • cajunqueen15
    cajunqueen15 Member Posts: 689
    edited November 2015

    It's a pill. 50% will get Everolimus and 50% a placebo. It is double blind, but the doctor said will probably which I received, because Everolimus causes mouth sores.

  • orknitter
    orknitter Member Posts: 62
    edited December 2015

    Anyone else feel emotionally numb? Kind of blah, not really sad but not really happy either. Just nothing. This is a hard way to feel this time of year.

  • lago
    lago Member Posts: 11,653
    edited December 2015

    Yup also got bad anxiety on this stuff. Never had any issues before taking the ESDs. Talk to your doctor. I know many women that had the same issue. If your MO says no then go to your PCP to get treated. Trust me it gets worse if you leave it untreated. I'm now on a low dose of anti anxiety/anti depressant. Once I got on it it was the first time I felt like me again since I started the ESDs (estrogen sucking drugs)

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