Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Arimidex

13132343637118

Comments

  • sue-61
    sue-61 Member Posts: 262
    edited October 2009

    I just had a colonoscopy yesterday. What a pain in the A$$, pun intended. I had to stop taking all NSAIDS for a wk before. OUCH! So I went to bed with a heating pad for my aching hip and I can say that that helped a lot. My hip only hurts when i am lying down on it. I also was lathering up with Ben Gay, but that has an aspirin component in it. Oh well, I didn't bleed after the colonoscopy.

    NSAIDS can lead to GI bleed. Tylenol to liver disease. I am sticking with the ben gay.

    PJ, you are very clever and should consider a stand up comedy routine. Loved the song.

    Sue 

  • ChrisC433
    ChrisC433 Member Posts: 70
    edited October 2009

    PJ:  You are too funny!  I'll have to learn the lyrics and sing when my body can't take it anymore!

  • carolehalston
    carolehalston Member Posts: 8,274
    edited October 2009

    Thanks, Pam, for giving us a smile with your clever song lyrics! 

    So far the SEs of Arimidex are very bearable.  The most annoying are the hot flashes and night sweats.  I know my dh must get tired of the covers being thrown off and pulled back up, but, bless him, he doesn't complain.

    Can't blame my weight gain on hypothyroidism because the synthroid has been working all along on this bc journey.  Portion size and food choices are the culprit. 

  • Sukiann
    Sukiann Member Posts: 88
    edited October 2009
    Love the song Pam!!!  You are very talented.  Kiss
  • Sukiann
    Sukiann Member Posts: 88
    edited October 2009

    I just found this article.  Throw my theory that all AI's will give the same side effects.  Maybe I will switch.....

    http://findarticles.com/p/articles/mi_hb4365/is_2_41/ai_n29432795/

  • ChrisC433
    ChrisC433 Member Posts: 70
    edited October 2009

    Great article Sukiann...thanks!

  • carolehalston
    carolehalston Member Posts: 8,274
    edited October 2009

    I was told I would be on Arimidex for 5 yrs, then switch to Femara.  One of the women on another thread I follow has been taking Femara from the beginning. 

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    I hope doctors know more about how and why the AIs work in 5 years (let's see... 4 yrs and 7 months for me).  Surely there will be a statistical consensus with some more definite guidelines. And I surely do hope by then they are off patent protection and don't cost as much!  So much has happened in the past five years and it seems to me that there is hope for these hormonal and biological drugs to do more in a less toxic manner.   Good luck to all of us guinea pigs and hang in there!

    Pam 

  • Biker54
    Biker54 Member Posts: 1,042
    edited October 2009

    Pam, your song was hysterical!

    Carol, I don't know why my onc is switching me to Aromasin instead of Femara after 5 years on Arimidex.  They all seem to do things differently.

  • mgm42
    mgm42 Member Posts: 18
    edited October 2009

    Sukiann - I read the article and I have been on all three AI's.  I started on Arimidex, and for 8 months, I had no side effects.  Then my hands stiffened and I developed trigger fingers and stiff joints.  I was switched to Aromasin.  I lasted on that for three months.  The joint pain wasn't as bad, but depression and muscle spasms set in.  So, I went back on Arimidex.  The muscles spasms did not disappear, although the depression went bye-bye.  So, we switched to Femara.  After two months on Femara, everything was worse.  They were going to put me on Tamoxifen, even though I'm post menopausal, but I had a blocked carotid artery so there was some concern about blood clots. Now, I'm back on Arimidex.  So far, so good.  I'm going to see a rheumatologist to determine if I have a type of myalgia - maybe fibromyalgia.  We'll see what turns up.  But, for now, I'm happy to be back on Arimidex - stiff joints and all.  However, my doctors did exactly what those doctors in Scotland thought about doing.  It just so happened that I wasn't a good candidate for the switch.   Laughing

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    Hi Sunflower,

    My approach to Arimidex is basically exercise. I walk three miles a day, try to ride my bike some but knees complain about that.  I take 1200 calcium and 800 Vitamin D a day.  I'm thinking about taking a multiple vitamin but not too enthusiastically.  I take Aleve but not for general joint pain, I have some bursitis ? in one shoulder that makes me uncomfortable.  

    I can't complain too much about SEs of Arimidex.  I have the usual hot flashes, always in the evening.  Just generally stiff all over but not pain really.  We eat pretty much a diabetic diet, balanced, fairly low carbs, not too much meat (mostly fish and chicken), lots of fruit and veggies, very little sugary stuff.  I find I am intolerant of cold temps... even the AC makes me ache more so guess it is lucky I live in Florida.  Really, the heat seems to loosen up my joints.  Wonder how it will be this winter?  I've learned not to sit too long, moving often keeps me loosened up.

    If Arimidex keeps the cancer from coming back this is a small price to pay.   Well, that and $339.00 a month :)

    Pam 

  • Kendrasue
    Kendrasue Member Posts: 107
    edited October 2009

    Thank you, JO-5, for sharing thoughts about going off Arimidex.  I'm glad to hear you are getting better.  I have a positive attitude, too.

     ~ Tangerine

  • sue-61
    sue-61 Member Posts: 262
    edited October 2009

    PJ, I had a friend who ordered her Arimidex from Canada. She is RN so I assume she knew what she was doing. She said it was half the price. I have an insurance policy that charges me a 30% copay so Arimidex still is pricey. But worth it. Except that my hip hurts and I am now "attached" to my heating bad and, I fear, addicted to Ben Gay.

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    Sue,

    I am looking in to that source.  I want to be sure I would get the genuine product so am a  little apprehensive.  But it would save a ton of $.

    Pam 

  • lollys
    lollys Member Posts: 44
    edited October 2009

    Hi I am new to this site--supposed to start Arimidex this week--when does everyone take it--Morning or evening??? scared to start but I know I have to --just dont want the weight gain or all the side effects--Thanks !!!Laura

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2009

    Hi Lolly...I took arimidex at bedtime..I did not gain weight on it but I could not lose any weight on it

  • kimbly
    kimbly Member Posts: 46
    edited October 2009

    I was on Tamox. for a nine months and then switched to Arimidex after I had my ovaries removed.  I didn't really have any SE on Tamox. either.  just hot flashes.  Arimidex increassed my hot flashes somewhat but not too bad, my biggest complaint is the hand stiffness.  It seems to be in the morning or if I hold my hand in one position too long. Not really any weight gain.  I walk 2-5 miles a day and do yoga. The yoga is very, very helpful for any stiffness! 

  • DENTHOMAS
    DENTHOMAS Member Posts: 27
    edited October 2009

    HI,

    I take Arimidex in the AM after breakfast. I've been on it for 9 months and the only side effect is hot flashes, just in the evening. I have some stiffness but since I have arthritis in my hands and have had carpel tunnel surgery in both hands, I take Tylenol twice a day. I do exercise and walk just about every day.  I think the exercise really helps.  No weight gain yet.

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    I take Arimidex in the AM, about 7:30 usually.  My hot flashes are exclusively in the evenings, rarely as late as 11:00 PM.  I was wondering... for those of you who take it at night, are your hot flashes clustered in the morning?

    Pam 

  • hrf
    hrf Member Posts: 706
    edited October 2009

    I take it in the evening. I have night sweats but not terrible. I haven't had any hot flashes but I have had a warm episode now and then. It's manageable so far.

  • carolehalston
    carolehalston Member Posts: 8,274
    edited October 2009

    I started taking Arimidex in the morning, but it made me feel bad for at least half the day, so I started taking it at night and like that much better.  The hot flashes occur mostly at night.  Every once in a while during the day.  If the SEs don't get worse, I can handle this.

  • lollys
    lollys Member Posts: 44
    edited October 2009

    THanks everyone for letting me know when you take Arimidex--looks like it is 6 of one half dozen of the other--so I will try a.m and switch to p.m if need be--hope everyone has a good weekend--trick or treat!!! Laura

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    So.. why are the hot flashes  worse at night?  It's not the Arimidex timing because it appears it does not matter whether we take our pill in the AM or PM.  Someone I read thought eating dinner triggered them but I have skipped dinner and it made no difference.  Also I have read posts by Stage IV women for whom Arimidex has stopped working, they say... they know this because tumors stop shrinking and/or start growing.  So how do those of us without mets who are on Arimidex, how do we  know it is working or if it stops working?  If we are not experiencing hot flashes or joint pain or whatever, is that actually a bad thing?  There was an English study that suggested women with the worst Arimidex SEs got the most benefit but that was later was said to be not true.

    Final question:  Does Arimidex cause rogue cancer cells to starve to DEATH or do they just go into hibernation?  From what I read chemo kills cancer cells but so far tamoxifen and AIs just hold them at bay.  Does anyone know more about this?

    Pam 

  • carolehalston
    carolehalston Member Posts: 8,274
    edited October 2009

    My bc dr's NP told me that she consoles patients with strong SEs from Arimidex by telling them the worse the SEs, the better the drug is working.  But sounds like that English study disproved that theory.  I started reading this thread months before I was due to start taking Arimidex because I wanted to know what was in store for me.  It became evident that there's no predictable pattern as to whether the SEs begin at once or develop later on or lessen as time goes on.  It seems to be a very individual matter.

    I felt awful the first week or two when I was taking the pill with my breakfast.  I dragged through the first part of the day.  Now I take the pill before going to bed and feel pretty good when I get up in the morning.  There's no difference as far as sleeping.  I take 1.5 mg of melatonin at night.  My PCP okayed my taking the melatonin.  I sleep very well. 

    It would make sense that Arimidex holds the cancer cells at bay.  I do worry about the ill effects to my body of being starved of estrogen. 

  • mgm42
    mgm42 Member Posts: 18
    edited October 2009

    I believe it's a mistake to believe "no pain, no gain," when it comes to side effects from chemo and AI's.   My onc explained that each person's system metabolizes all meds differently, be they antibiotics or cancer drugs.  The SE's that one person experiences may be similar to those of another person, but not identical.  If SE are more severe for one person than another, it is NOT a sign that the drugs are working better for the one who is more debilitated, just that the med is being metabolized differently.  Hope this helps. 

  • Irishsun
    Irishsun Member Posts: 5
    edited October 2009

    I just checked the mayo site, which made me feel alot better.  Unfortunately I have most of the common side affects and alot of the less common side affects ass well.  I've been on all 3 commonly used meds with about the same results.  But no matter how bad it is, I've had breast cancer 3 times since 2005 and one bout with skin cancer..so I'll deal with it!

  • carolehalston
    carolehalston Member Posts: 8,274
    edited October 2009

    Thanks, Marilynn, for the explanation.  It does help clarify the situation.

    Irishsun, sure hope your SEs get less severe.  I admire your determination.

  • pj12
    pj12 Member Posts: 18,108
    edited October 2009

    Irishsun,

    Forgive me if this question is out of order and just ignore me...

    but... have you been on AI's prior to and during your 3 episodes?  We put so much faith in the drug, it will be hard to hear if it has been that ineffective for you.   

    Thanks for sharing your story with us.

    Pam 

  • RoxanneC
    RoxanneC Member Posts: 37
    edited October 2009

    I have been on Arimidex for a month and a half. When I had my onc. check up a few weeks ago, she started me on Zometa, since I was already osteopenic. She said that they have just finished some studies on Zometa, and that it not only strengthens your bones, but also reduces your chance for recurrance.

    Roxanne

  • rreynolds1
    rreynolds1 Member Posts: 62
    edited October 2009

    Hi Everyone,

    I was told that the further a women is from menopause, the easier the SEs are.  I went through menopause 9 years ago and have very mild if any side effects.  I asked my onco if it was working and she said the SEs have nothing to do with how well it is controlling the estrogen.  I hope she's right!

    Roseann