Aromatase Inhibitor and just walking away.
I was premenopausal at diagnosis. 100% ER/PR+. I took 5 years of tamoxifen and just three months ago switched to femara. I don't want to do this anymore. I want to stop taking the drugs and walk away. Have any of you decided to follow a similar path? If so, can you tell me about your decision making process and how you feel about it now?
Comments
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I get it. I didn't get any AIs or Tamoxifen 7 years ago at first diagnosis and was kind of glad. Now I'm stage IV and have to take Arimidex. If I'd taken Arimidex years ago I'd have to go on IV chemo now. Maybe I wouldn't have recurred, who knows. But I'm kind of glad I had that chemical break. In fact, I hate Arimidex so much I'm asking MY MO on Tuesday if I "can just walk away" too. So I truly know how you feel. You've paid your dues on 5 years of Tamoxifen. Of course they're now recommending 10 years - so did 5 years do you any good???? I'm curious to see what others have to say.
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Until relatively recently they said 5 years of Tamoxifen was enough and you've done your 5 years-so lots and lots of women have done 5 years and everyone called it good enough.
Now they say 10 years of Tamoxifen or switching to an AI after 5 years of Tamoxifen is better. If you did the tamoxifen for 5 years w/out many problems, maybe you can talk to your OC about going back to it rather than staying on the femara, if femara is not being kind to you. But if you just want to quit taking anything, I'd say that is a reasonable choice as well.
I've read about a test that shows how much a person might benefit from staying on hormonal suppressants after the initial 5 years-for some the possible benefit is very small. You might want to talk to your OC about this testing before making a final decision.
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I just spoke with my onco and I am going to stop taking the AI for a month and we will get together and discuss how I feel without it at that point. I am experiencing anxiety and depression, which came on at the same time as switching from Tamox to AI. If I am less anxious or depressed with NO AI in me, I can go back on Tamoxifen, which did not affect me like this.
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Good for you to talk it out! I hope you feel better soon ....
I've been on Zoloft and Welbutrin for over 25 years and don't know how I would be handling all this without the chemical assistance. One thing I did find is that I started taking Magnesium last Fall and it has helped TREMENDOUSLY with my stress through all this. Please consider adding the supplement to your system. I'm almost an expert on depression and anxiety and it took years and years to get the correct balance of my anti-anx meds. I tried Paxil years ago and ended up suicidal in a "mental" ward!!! Like, doi! Why give us drugs that do more damage than good????
Since last Fall, Magnesium has helped me:
- deal with a HORRID new boss
- deal with the stressors of my job (investments and banking)
- deal with a new lump in my chest
- deal with a biopsy Dec 29th
- deal with NOT telling the kids through Christmas as I awaited the biopsy!
- deal with told it's benign and buying a new (used) car
- deal with getting fired by that horrid new boss
- deal with getting a new job FAST $$$
- finding out 2 days after starting new job that oops, when they took the lump out they found cancer and went back and checked the first biopsy and it was cancer too!
- getting all the scans that becoming Stage IV means and new onc and new radiologist as we moved
- having to tell the kids
- my husband got fired the first day of my rads - thank God we were together!
- doing 25 treatments of rads
- having to continue working $$$$$
And handling it so calmly that my company didn't really "get it" until I wasn't there every morning due to getting zapped at a cancer centre an hour away. I'm sure I would have lost it by now if not for the Magnesium in combo with my other meds. We get crutches when we break a leg, sometimes we need crutches to get us through a crappy period. I have no shame. I have a chemical imbalance in my brain that needs daily adjusting.
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Unfortunately, I will not take antidepressants, I have not had good experience with them and am uninterested. Magnesium is something I would try.
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I hope it works as well for you as it did for me! As you can see, I had a bad experience with an antidepressant, too....
With the magnesium, I just bought a good brand, probably at Walmart and took the daily recommended dose not knowing if it was going to work. I had read an article saying that most of us are magnesium deprived. Anyway, as my world went into chaos it was amazing to realize that I wasn't reacting with undue stress, but handling it all very logically. A lot of people have wondered how I'm able to take on so much....I can only figure the magnesium was the difference as other meds stayed the same.
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After being diagnosed I had a lot of problems with anxiety and dipped heavily into the Xanax bottle. Since my anxiety these days tends to come at night when I'm winding down and trying to sleep, I've found melatonin to be very helpful. I take about 6 mg before bed and have been able to pretty much put the Xanax bottle in the very back of the medicine cabinet (for emergencies only now) since I started taking the melatonin.
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labelle, the nice thing about Melatonin is that if you wake up in the middle of the night you can take another one without adverse effects. Sometimes you can get a "hangover" from over the counter sleep meds. Not Melatonin.
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Dear Barbe
You sound like a gal I would like immediately upon meeting! TY for the great advice re: magnesium and sharing such a personal part of your journey as well.. My accupuncturist (sp) highly recommended M for me (not for BC) but chronic pain due to cervical neck disc degeneration (too many rear-enders) some months ago, and I'm not always consistent. She wanted me to calm down more (like you, I was working in a toxic academic dept.--yep--new awful, boss; but fortunately I am retired just this last Dec. so for me, a light at end of tunnel) Seeing the M benefit you so so much, I will get back on that regimen. I was dx early stage E+ 5mm early Jan. 2016.
I too have been on SSRI's going on about 25 years. And had almost always fairly good results because -- unknown to me until now--the meds worked synergistically with the estrogen patch I had been wearing for 16 years due to cerv CA resulting in radical hyst/oop, in 2001. I never really went through the menopause...I am very concerned -- having completed: lumpectomy, sentinal node, radiation -- 16 weeks---the repercussions for me with my SSRI's. Having done my research, I consulted with my shrink and like you recommended pretty much the same regimen.
I am now dealing with all the emotional, physical etc. maladies of the 'pause, and of course my ONC wants me to start the inhibitors...in a month...
I have much to weigh with this and REALLY a chicken re; hormonal anything....My RO said I was in single digits for reoccurence w/rads alone, but said, give the AI's a try at least; if the SE's are intolerable than think about quitting....
Again thank you for linking all this together for me an others as this is truly on MY plate at the moment.
flowergrl63
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flowergrl63, I'm glad my words helped! Please keep me posted on how you're doing. I don't recall how long it took, just realized at one point that I was okay with everything. I wasn't using magnesium for breast cancer, but for stress. I didn't know it helped bones - it hasn't helped mine - I take narcotics and am still in pain. I have added tumeric and it helps slightly but not enough yet. Good luck, sweetie!
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I was post-menopausal at bc and was given anastrazole (Arimidex) after my surgery. At the time the onco-doc said 5 years, maybe 10, depending on how things go or what new discoveries would be made. The SE's were so awful, but not the one we mostly hear about, the joint pain. May I should list them here as an opportunity to vent!
Dry eyes - - I had to use lubricating drops; dry, dull, thinning, brittle hair - - it was like the kind of hair your old cat gets when their kidneys fail , yeah, "kidney-failure hair"- - nothing helped; dry ears - - yes, dry ear wax - - had to use drops; headaches; dry sinuses and nose - - saline spray; dry throat - - always needed a lozenge - - had to get sugar free ones for bedtime; hot flashes - - I had hot flashes before but these were definitely different; dry skin, and it seemed to get thinner because the collagen layer was melting away (a normal aging thing, but accelerated here) - - never did find a really good product - - I must have aged at least 5 years; stomach started to feel like it was sluggish and always full; armpit and pubic hair got thin and brittle (probably more "kidney-failure hair") ; alternating constipation and diarrhea - - tough to figure out what to take; hemorrhoids; feeling of dryness in the rectum - - hard to explain, but if it happens to you, you will know it; trouble falling asleep - - they gave me lorazepam; gas - - tried all sorts of things; feeling of digestive slow-down; vaginal dryness - - I was using products every day.
I made a lot of diet adjustments and supplements and products to help but I was so miserable. They told me my body was "just adjusting" to the AI and would all settle down later. Try to take a week off and start again, it might be better. After one month of taking this stuff, I took a break, hoping that my body would normalize a bit and then I could resume. Things got a little better, I returned to a few normal bowel movement days and eleven days later I decided to return to the treatment. That was Feb 19, 2013. I took my anaztrazole half way through breakfast so that it would be "cushioned" by some oatmeal on either side in order to reduce the digestive effects. Bad luck. About 35 minutes after breakfast my stomach stopped working, that is, stopped contracting. How did I know? You never really feel your stomach working, but when it stops you notice. Big time! Felt like a big, heavy football inside. I ended up in hospital 3 days later for exams because it still felt like that, I had no appetite. Gastroparesis from vagus nerve damage. Hello.
Then I had to deal with that. The gastro docs called my onco-doc who wanted to see me. At that appointment he said he was very surprised that this medication could cause this problem and gave me a prescription for a different AI (Aromasin) to start taking after I get my gastro issues under control. "Make an appointment to come back and see me in May." "Thank you, Doctor."
I made the appointment. I never filled the prescription. My feeling was, if this AI did so much damage, I do not want to risk finding out what the next one will do. I'll take my chances with a natural approach. No more "industrial medicine" for me. I had bought WAKING THE WARRIOR GODDESS by Dr. Christine Horner, which has a lot of information about natural ways to help our bodies be strong in coping with cancer. I decided to read it thoroughly and make a natural program for myself based on some of her recommendations.
But, first, I had to deal with the gastroparesis. I shall save you the details, but, fortunately, I was able to make dietary and supplement and life-style adjustments that were helpful for dealing with both the gastroparesis (my immediate problem) and the possible recurrence of cancer.
This story has a happy ending. It took a long time, but eventually my body did return to normal. Except that my skin collagen never returned, so I still look older. Not a big f**kin deal for me. . . I still have the spirit I had at 19! Last year I got off the lorazepam (there's a story from hell) and eventually the vagus nerve did regenerate itself and I felt my stomach contract in hunger pangs on June 24, 2015. I was so thankful for that feeling that I waited two hours to eat! Oh, happy day. I still have some stomach issues, but they are more manageable now.
I don't have an onco-doc any more. I don't get any scans done. I'm OK with that. The cancer may come back somewhere in my breastless body one day. If it does, I'll deal with it. Not with any AI's though. Meanwhile, I am having a good life, trying to make a little art, work in the garden, trying to follow the little OncoWarrior F.I.G.H.T. program that I have created for myself, trying to be thankful every day, and be a good "big sister" to the many bc sisters that I meet along the way, in support group and elsewhere.
So, there was my long answer to your short question. I quit, I walked away, and do not look back. If cancer returns, I shall go to an Integrative Medicine program that leans away from industrial-pharmaceutical treatments and more towards natural ones.
natasha
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Thanks so much for taking the time and responding to my question. I am unsure I am at the point where I want to walk away. But my mental health has surely plummeted in the time period where I began to take AI. I am intensely anxious and I lean toward depression where I had not done so previously. I stopped taking the AI on Friday. I plan a vacation with my man in the next two weeks, after which I will make an appointment with my onco so that I have 1 months of NO AI to compare myself to. I don't think the AI works for me.
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MT1 - I had the opposite problem with those same side effects you described but while taking Tamoxifen. I tolerate Femara much better. As you already know we will respond and tolerate our treatments differently. (I was also 100% ER/PR+) We are fortunate to have these various treatment options for us hormone positive patients. You can always stay on Tamoxifen if it works better for you. Your doctor can best discuss that with you dependent upon your risk level.
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I want to take something. I too am glad that I have this medication option. It will be interesting to see how I feel after not being on the medication for a month. Tamoxifen worked well for me. When my doctor told me that perhaps the lack of estrogen to my body could create this effect, I came to wonder myself. This is unlike me. I don't go south like this for as long as this. Even my guy said something to the effect. It at least makes me hopeful to speak with my onco in a month.
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I recently went off Arimidex for 2 weeks and I've been on it for about 10 days and am NOT reacting as badly as I did the first time. I wonder if it's like "shocking" your system the first time and the second stab works....who knows.
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I can definitely relate MT1. I am bi polar 2, I was diagnosed when I was 17, after a different DC at age 13.
My balance of meds is perfection, I live well and function without a hitch. Both tamoxifen and ovarian suppression with an AI affected my mental health-I was hospitalized. I made the choice to walk away. I understand what could happen, I am a Nurse, and I am okay. Without my mind, without my mental health, I have zero quality. My body can be alive, but if my mind is unhealthy than what good is my body? I have chosen quality over quantity. Not easy, but I am okay with it.
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Thank you, VioletKali, for sharing your decision to walk away. I have similar issues, and I am finding it hard to get support for my decision.
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violet, you tag line says you're on meds, does that need updating? I had a long talk with my onc this morning and he wants to wait until the effects of radiation are long gone before he'll consider changing me. I agreed. Made sense. I'm 58 and had a hysterectomy about 10+ years ago so am used to not having large amounts of ER in my system. Maybe that makes a difference?
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Im sure by now that those of you active on this forum know I refused anti hormone treatment. Its a very personal decision. I was on HRT at the time of diagnosis and obviously had to come off of it. So for now Im already dealing with se of estrogen levels falling. I also have a sleuth of debilitating autoimmune diseases which will get worse with no estrogen. Actually they already have since stopping HRT. Im much more concerned about QOL than recurrence for now. Please feel free to private message me if you want to talk more details. Good luck to all.....
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kayb, I just use whatever the recommended daily dosage is. REALLY helps my stress!
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Tosca and Violet. I completely understand and wish you well. Although I don't struggle with my mental health I do struggle with my physical health. This is why QOL is so important to me and I refuse to take anti hormone treatments. So I get it.....
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I updated it. I did well for 3 weeks and posted that, I has forgotten about it.
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Tosca-
I think that people have difficulty understanding the idea of not treating an illness as aggressively as possible. Cancer causes death, and that scares people.
I have always said " I am not afraid of death, I am afraid of living with a poor quality of life ".
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GREAT point VioletKaili. When my Dad was dying of lung cancer I asked him if he was afraid to die and he said no, just afraid of pain. I was able to assure him that we would keep him pain-free and we did.
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I've been on arimidex for about 18 months. At first it didn't bother me at all but at about one year I started to get bad hot flashes, joint pain, vaginal dryness, low libido, and anxiety. It was making me miserable to think I was turning into such an old lady. If it would have continued I was prepared to have a talk with my MO about continuing.
Fortunetly, the side effects have since diminished and I'm feeling really good right now, actually better than before cancer. I hope I don't jinx myself by saying that. Sometimes I wonder if the arimidex is not being effective any longer and some estrogen is sneaking back in. Anyway, I know things can always change, but at least at the moment I feel good.
I hope every finds a path that gives good quality of life.
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Interesting thread...I've taken magnesium for years, but used it for an anti-anxiety tx. Now, in addition, I take theanine and 5 HTP to counter the affects of mood problems brought on by AIs. You might look into those supplements too. Theanine is an amino acid and 5 HTP is a chemical derived from tryptophan, another amino acid. I like these because they don't interfere with aromasin, which I take. Both of these, taken in the a.m.s, definitely help counter mood swings and anxiety. I was on a low dose anti-depressant for a long time to counteract hot flashes, but that drug was so hard to get off that when I finally did quit (I think it contributed to weight gain as well) I told myself NEVER again.
I take 3-400 mg of theanine and 100 mg of 5 htp, in capsule form, daily. Sprouts natural foods supermarket has them; so does every Whole Foods, and you can buy them online, but be careful to vet the website first. I know that there are some shady manufacturers out there that will lie about strength, etc.
Claire
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I was diagnosed with Mucinous Carcinoms in November, bilateral mastectomy in December, prescribed Letrozol in January and threw it away 2 weeks ago because I couldn't handle the body pain, fatigue and mental craziness another day longer. Since I lost my insurance and can't get Medicare until next month I am med free for now and feeling so much better. A friend had to stop the same med and is doing great on Aromasin. Next week when I will have medicare & can visit my oncologist I will discuss Aromasin with him. BUT . . . if it does to me what the Letrozol did I would rather chance a reoccurance of cancer than to live like that.
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The original poster here did complete her 5 years on Tamoxifen, so no matter what she decides to do in terms of treatment now, it is rather different than "just walking away" from the git go.
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thanks Claire I have heard of both of these recomended for a child with ADHD
Did they help your hotflashes? I just have horrible hotflashes at night and insomnia.
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Hi exerciseguru, actually I read some reports that 5 HTP was used to try to control hot flashes and results seemed to be inconclusive. But I think taking both Theanine and 5 HTP help me a lot. Certainly with mood. I know that I am never taking another SSRI for anything: even the 37.5 mg amount I was taking was a bear to get off; I had to wean off it a little tiny bit at a time. Horrible brain zaps, dizzy spells, etc. Terrible drug for me that was only rx'd to allieviate hot flashes.
Because I switched from arimidex (bad for me) to aromasin (much better for me) I also noted a decrease in hot flashes.
I also take my aromasin around 2-3 p.m. now, with some small snack that has fat in it to help absorption (handful nuts or one organic light string cheese) and since I began to take my AI earlier in the day, I am not woken up with so many hot flashes at night as I was when I took it right before bed. Since I'm done with the majority of my day by mid-afternoon, even if I do have hot flashes, they aren't as annoying as when I have one while I'm teaching a class.
Claire
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