Aromatase Inhibitor and just walking away.

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

    I bought Loratidine last week and it seems to be working as well as Claritin did.

  • Ade
    Ade Member Posts: 740
    edited December 2016

    Looks like this post kind of faded away. But if anyone is there I will update on my end. I was put on Exemestane after a bad bout with Letrosol. I am me again mentally which is WONDERFUL! Still have bone pain but am going to try the Claritin (generic) that I take anyway for seasonal allergies. My problem with the Exemestane is the weight gain and extreme fatigue. Both become depressing sometimes but I am still far better off than before. I have a new onc (brand new - I was one of his very 1st patients) who I think is very much up on the latest. He doesn't offer any suggestions for my 2 complaints but did say he went to a big San Antonio conference recently and the consensus on length of time on meds is back to 5 years from 10. (GOOD news when you're on an expensive one like mine!) Hope you're all doing ok. Ade

  • Momof2boysandagirl
    Momof2boysandagirl Member Posts: 1
    edited December 2016

    Not sure how active this is, but I have a call in to my oncologist about walking away from my AI. I can't go on tamoxifen due to a blood clotting issue, so I am getting a Lupron shot every month to put me into menopause and then taking Arimidex. I hate it. It has only been two months and I have lost all vaginal sensation and I am so fatigued that my quality of life sucks.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Hi Momof2boysandagirl-

    We wanted to welcome you to our community here at BCO. We're sorry to hear of the decline in your quality of life; we understand how difficult it can be. We hope you find support here, and that stopping your AI brings some improvements!

    The Mods

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

    I did my time sort of 4 years total. I am never going back as long as cancer does not return. It takes a long time to feel better.

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

    Hi all. I refused anti hormone treatment from the start for many reasons. Most important one being I already have a debilitating autoimmune disease. I refuse to take anything that will impact my QOL even more. I have chosen to lower my estrogen levels naturally. I have lost 30 pounds and try to exercise daily. I take DIM, melatonin, and berberine. I'm 18 months out and so far so good. Good luck to all navigating this disease...

  • KatieMarie
    KatieMarie Member Posts: 3
    edited December 2016

    Hi,

    I just found this site and this is my first post. I'm on exemestane. I had stage 2B ER PR positive. Finished chemo and radiation treatment in November 2014. And then began taking exemestane. It made the bones in my hands and feet feel stiff but not unbearable. I was wicked, wicked tired and depressed, but it's always really hard to tell whether it's the cancer and other negative situations in your life or the medicine. I was so depressed and tired I stop taking it. I think I felt a little less fatigued but it didn't help the depression go away (even though I'm on an antidepressant, which I was on anyway before I ever even had cancer).

    But here's my question;

    Rather than going off it completely, I have been taking it for two months on, then two months off, then two months on, then two months off for year. I just didn't want to think about cancer anymore. And I could not get the words "estrogen BLOCKER" out of my mind in terms of thinking that an estrogen blocker is going to SUCK the life out of me. Started taking it when I was 53. Isn't the "estrogen BLOCKER", in a sense, just accelerating a woman's age and doing damage anyway in terms of sucking her dry of her womanly hormones? That was supposed to keep us vital? I can't understand why people are not freaked out when they are told they are going to take a pill for five years that's going to BLOCK their estrogen! Am I out of my mind… Does anybody have any similar thoughts or information contrary to my logic? I'm really worried about not taking the pill. Katie

  • KatieMarie
    KatieMarie Member Posts: 3
    edited December 2016

    it's unbelievable the varying degrees of side effects that women have. I've heard absolute horror stories and then I've heard stories from women who are so so happy they are taking it that they think of it as their daily "oxygen" pill. I don't understand it, I'm very confused, and I'm really sorry about your situation.

  • KarenAus
    KarenAus Member Posts: 94
    edited December 2016

    I gave up on the inhibitors after my 10 time in hospital in 2 years, most of them due to one complication or another. The straw was this last one, I had an infusion for osteoperosis due to the femara. After I came out of hospital I went and saw my Onc and told him I was pulling the plug and to my surprise he said he didn't blame me.

    Some of the side effects I have had through my treament have been life threatening. My thoughts are no point in stopping the cancer from returning if I die before hand. I will deal if it comes back.

    I am now going down the natural road, keeping my body alkaline and tring to look after myself as best5 as possible.


    KarenAus

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    KarenAus, have you tried Tamoxifen? I assume you are in menopause from chemo, but if not, what about Zoladex shots? Even post menapausal women take tamoxifen if they can't tolerate the AI's.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2016

    I completed 5years on Tamoxifen a couple of months ago. I walked away, opted out, just plain decided not to go for another 5years. Tamoxifen caused me quite a few problems. Growing uterine polyps(at least 1 per year) that had to be surgically removed was one of them. I'm post meno now & could switch to an AI. The benefit is small for me. It was presented as an option but not strongly recommended.

  • KarenAus
    KarenAus Member Posts: 94
    edited January 2017

    Can't take tamoxifen due to have a blood clot in my heart while on chemo. Just not worth the risk. As my Onc said there is nothing left to try that wouldn't cause me problems.

    KarenAus


  • Variable
    Variable Member Posts: 77
    edited January 2017

    Thank you KatieMarie!

    "I can't understand why people are not freaked out when they are told they are going to take a pill for five years that's going to BLOCK their estrogen! Am I out of my mind… Does anybody have any similar thoughts or information contrary to my logic? I'm really worried about not taking the pill."

    I could not have articulated my fear of changing who I am as a woman to prevent BC from returning better than your earlier post! I am absolutely terrified of starting down this road!!!

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    Variable, remember you can always stop taking the pill. I took different AI drugs for a total of 4 years. I was a healthy person before treatment and I developed some issues that may be permanent but time will tell. I feel pretty good overall since I have stopped treatment. If you feel these drugs are not worth the risk then I would stop but if you believe they are preventing a recurrence take them.

    It is all about weighing the risks.

  • CCtoo
    CCtoo Member Posts: 41
    edited January 2017

    Will arimidex? Benefit an 80 year old woman...Who does not have much estrogen anyway....I do not want to take it....And decided not to have radiation either.....Just lumpectomy....Surgeon said he removed all the cancer!!


  • Hope1201
    Hope1201 Member Posts: 3
    edited January 2017

    I had a lumpectomy (1cm) no lymph nodes affected, clear margins (T1b, No, M0) and am undergoing radiation. I was told that I would have to take letrozole. I have horrible hand arthritis and bone pain now and was told that it causes bone pain, fatigue, naseau,hair thinning and other side effects. I am 71 & don't want to take the aromatse inhibitor, but was told that if I didn't the cancer could metastasize. If I take tetrazole metastasis will decrease by 30%. The oncologist wanted to also do chemo, which I rejected, because my ki-67 rate was 40 (cell proliferation high), so she said the aromase inhibitor is a must. I don't want to take lerozole, because of the side affects, but really have to weigh my options and don't know what to do? Do I want to live thinking that my cancer can metastasize, or do I want to live with the horrible bone pain and side effects? I finish radiation at the end of February and then have to start the aromatase inhibitor.

  • taag4
    taag4 Member Posts: 100
    edited January 2017

    Hi Hope1201 I am on anastrozole after trying letrozole and one other. Because I had a blood clot these are my only options. Your right I did have terrible bone pain and was able to handle it for maybe 8 months then I was onto the next pill. Anastrozole is my last chance at taking some kind of estrogen blocker. So needless to say I will stay on this pill for as long as I can. I was at my oncologist office yesterday to go over a ct scan because they have found nodules in my lung. I guess what Im trying to say is that after all that I have been through I will put up with the pain because thinking your cancer might have metastasized is a terrible feeling. You could always try the pills and see how you feel everyone is different, maybe it won't bother you as much as you think. You can alway stop taking them. Again its a personal choice only you can make.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2017

    Please bear in mind that while all of those side-effects are possible, they are NOT likely to happen to every woman, nor to the same degree. Furthermore, some women have fewer side-effects with one AI than another. I think we all owe it to ourselves to at least give them an honest try - and also to be upfront with our MOs about whatever issues we may have.

    Being well-past menopause does not mean you don't have estrogen being made in your body (converted from aromatase). Having existing joint issues doesn't dictate that they will be any worse on AIs.

  • florida_jo
    florida_jo Member Posts: 15
    edited February 2017

    I am so amazed and jealous of women who have no side effects! On Arimidex first 5 mos could not walk at night because of the Achilles tendon pain. On Femara last month, only slight, bearable Achilles tendon pain, but raised my cholesterol too high and have to take statins. I wonder if anyone have alternating drugs and how often with what results? I am thinking alternating them frequently would somehow disrupt the SE? Any thoughts, experience? This is my first year of hormone therapy and already I am not happy, wanting to quit every day.

  • Bright55
    Bright55 Member Posts: 176
    edited February 2017

    Newbie here

    just read you old post

    How are you going after the ups and downs

    I have caught up on...slices of joy..... posts here to read someting uplifting

    Thanks for your comments


  • Ade
    Ade Member Posts: 740
    edited February 2017

    Welcome Bright55!

    I'm still hanging in there on Exemestane now for 10 months after a nightmare time with Letrozole last year. I am EXTREMELY tired and have gained WAY too much weight - both are depressing...but not as depressing as cancer returning! :o)

    I have found that taking L-Theanine everyday is helping me to level the emotions and cope better. I feel for me it is safer than taking antidepressants.

    Just 4 more years to go. :oD

    Hang in there, girls!

    Ade

  • Ade
    Ade Member Posts: 740
    edited February 2017

    Good call, mfsanders. I take 5,000 of D in the morning AND at night. Magnesium helps too. I hope you do well this time around. Yes, I hate the se's too but it's better than chemo & radiation - right?


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    Must correct a misconception—aromatase isn’t converted to estrogen. Instead, it’s the enzyme the liver makes, which converts the androgens made by fat (especially belly fat) cells and adrenal glands into estrogen. So long as we have fat cells (which can be reduced in volume but eliminated only by surgery) and adrenal glands (which we can’t live without), we ER+ patients need to chemically inhibit the aromatase our livers produce. Androgen is converted to estrogen by aromatase.

    Those hives may be caused by an allergy to one or more inactive ingredients in your AI—dyes, metal salts, lactose, talc, etc. Before giving up the drug, try switching manufacturers to a version that contains the fewest inactive ingredients you can find. In my case, the letrozole made by Roxane has fewer inactive ingredients than brand name Femara, which in turn has fewer than Teva, which most patients report they can best tolerate.

    Letro has increased my LDL almost to the point I may have to start a statin (only my very high HDL keeps the ratio in the “okay” level). But my a1c is creeping up, and statins do increase both that and blood glucose. So I may also have to go on metformin. It’s a bitch to realize you’ve reached the age where when one thing “breaks,” “fixing” it breaks something else, then fixing that breaks yet another thing, ad nauseam.

    We are so often exhorted to “do all that we can do” to “kill cancer” and prevent mets that we lose sight of the difference between “all that we can do” and all that we should do. That’s one reason I like my MO. She “gets it."

  • Ade
    Ade Member Posts: 740
    edited February 2017

    The thing about statins is that they reduce your body's natural CoQ10. This actually weakens muscles - which the heart is. It is thought that cholesterol is not the villain. Our brains NEED it as do other body parts to function. The true culprit is inflammation which causes plaque and clogs the arteries. People with high cholesterol are not at a greater risk than those with low cholesterol. Reduce inflammation and you prevent risk of arteriosclerosis. Big Pharma has pushed statins on us far too long because it's a real moneymaker for them, and too many physicians go right along with it rather than visit the research which indicates that using them over a long period of years not only causes other serious problems but only lengthens the life by an average of 3 months.

    Ade

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    My PCP is very conservative about most meds, especially statins (unlike my DH, a cardiologist). He is monitoring my total cholesterol-to-LDL ratio and CRP, and advising lifestyle measures so long as my ratio remains in the desirable range and my CRP not elevated. Practicing an anti-inflammatory lifestyle & diet sounds like the key. But avoiding all sources of inflammation is easier said than done, especially when it makes life extremely boring and unpleasant for many of us. I try to stay away from refined carbs & sugar, but stress and AIs make it very difficult (especially when I had to take a steroid to combat severe laryngitis & asthmatic bronchitis in Dec. & Jan.). I do take CoQ10, low-dose aspirin and krill oil for heart health, though. Testing to determine extent of plaque is either invasive (angiography) or high in radiation (ultrafast CT) or both. And neither can determine whether those plaques are stable or friable.

  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    Chi- What's the difference between Krill Oil and fish oil? What brand of Krill Oil and CoQ10 do you take?

  • LM070917
    LM070917 Member Posts: 323
    edited February 2017

    This might sound funny, but what I don't get about hormone therapy is, is it supposed to only protect you only whilst on it or is it supposed to protect into the future when you are not on it anymore..whether that's in 5 or 10 years? Because when people come off it, obviously estrogen is going to start to circulating again..whether that's from your ovaries or what goes in your body in general..so if you're ER/PR positive, does that mean any amount of estrogen can now set off recurrence or is it only when estrogen dominant? Excuse the ignorance 😀

  • BeachKate
    BeachKate Member Posts: 6
    edited February 2017

    Meeting with my MO today to make a decision about hormone therapy. I am still confused and don't know what to do.....

  • Bright55
    Bright55 Member Posts: 176
    edited February 2017

    hi beach kate

    Consider starting the AI ..this seems to be recommened protocol world wide

    Did you have lymph node involvement?

    Tocombat osteoporisis keep fit follow info from this site lots of fitness and nutrition info

    Loose weight reduce carbs and alcohol

    Im 9 months on letrozole still active no side effects

    For me it is reducing the size of my lung mets

    Good luck


  • Ade
    Ade Member Posts: 740
    edited February 2017

    Lottemarine - my understanding is that the longer you cancer free the better your chances are for non-recurrence. I wondered about that too.

    Chi - sounds like you have a good handle on it!

    BeachKate - I'm praying your MO has wisdom for the very best treatment for you. Remember - if the first treatment meds don't work out for you (too many se's) there are usually others that can be tried. You're not 'doomed' with a hard one.

    You all have a great day!

    Ade

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