Estrogen Blockers ??? Take it or dont take it ?????
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I often feel that we're doing a real disservice to the newbies with all our frank talk about the POSSIBLE side effects of tamoxifen and the AIs. I know I was scared to death to take the first one - certain my life would be over from that one little pill. But you know what? Nothing happened. Knock on wood, 2 years later, I am still side effect free. I'm the same age as you, wonderingcancersurvivor, and you won't believe the things I've done in those 2 years. I painted the outside of my house, knocked down interior walls, remodeled a kitchen and 2 bathrooms, did several big landscaping projects and right now I'm in the middle of ripping up basement carpet and sanding off all the old glue. I refuse to let a little pill stop me. It didn't make me old, it made me determined!
What is it about this little pill that makes us so afraid? Dr says we need chemo - ok, if you say so. They say we need radiation. Well, I guess I can do that too. But that little pill leaves us quaking in our boots. Is it because we take it ourselves or that it's just the last straw in the whole scary bunch of treatments?
Everything has side side effects. I went into anaphylactic shock from over the counter Aleve, had horrible hives from prednisone and can't have garlic without hours of misery. We just need to be aware of possible side effects and discuss any issues we have with our MO so that we can take the best possible care of our own health. If one has debilitating side effects, then by all means, stop taking them. Quality of life is important. But don't just assume those issues without at least trying.
wonderingcancersurvivor, you asked about whether the pills help prevent a recurrance or a metastasis and the answer is yes. They are systemic treatments - in case any undetected cells escaped these drugs keep them from getting fuel to grow. My dr called it my insurance policy and I happily take it every day so I can thumb my nose at this horrible disease.
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I asked my oncologist how will we know if the anastrozole is working. He said there is nothing we can do or check to know it is working. It all about probabilities. I am a firm believer in questioning and becoming informed for yourself and not just take everything the doctor tells you. Use them as your expert advisors collect your information and you make a decision.
It is ok to be "afraid", or as I see it as cautious. I, for instance, said no to chemo after it was recommended from a high oncodx score. The numbers for benefit were unimpressive to me. I did however decide to take anastrozole and then exemestane. I still have lasting effects from the drugs after being off for 2 years. But I made the choice and don't regret it.
It is important to know all the possible side effects from any drug you take.
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Thank you all for your experiences and perspectives.
I am joining this thread as I was just prescribed letrozole by my Onc. I had a double mastectomy on 3/29 and my pathology report was not what we'd hoped for.
I'm a little surprised that this was prescribed already as I have not yet had my Radiation treatments and I thought hormone therapy was the last treatment after chemo, surgery and radiation.
Didn't think to ask about it at appointment time.
Going to keep following and learning.
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Luckynumber47, I was nodding in agreement when I read your post. You go, girl.
I have swallowed my letrozole pill every single night for close to six years. That first pill had me wondering when the thundercrack would hit and I would fall over into a joint-screaming, fatigue-flattened, flaming lady-bits, heap. Nothing happened. Nothing dire has EVER happened, at least nothing that exercise and some lovely lubricant couldn't turn around.
When I emerged from the treatment churn in 2012, if my oncologist had said "just walk around at the mall naked each day, it will significantly reduce your chances of breast cancer recurring," I would have flung off my clothes and grabbed a shopping bag. Yeah, it sucks that I take a pill each day that increases the risk of bone loss and other issues, but there it is. I HAD BREAST CANCER. That sucked too. It was serious. It was bad. I'll take my pill to increase the chances I'll be around for my granddaughter's wedding.
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sbelizabeth, well said!
Simbobby, I started anastrozole before radiation. Didn’t want to stay another month without protection and wit stage 3 diagnosis.
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Agree - the annoying joint pain, sour moods and hot flashes - are MUCH better than the alternative. Give me all of that and more - if it helps prevent an early death....
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Thank you Musial,
That makes sense as I don't start my rads until May 1 so they likely wanted a treatment in place in the interim.
Elizabeth- this is what I hope to learn here. Are these side effects simply an annoyance which is likely manageable, or are they intolerable to the point that you never have a good day or something in between.
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Simbobby - I'd have to say they're annoying. But, not that bad! One thing - I didn't mention - is that it makes me feel like I'm doing something - to help prevent Stage IV. And, that's a good feeling. Exercise - helps a lot - too!!
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Some people truly have no problems with these medications. Some have the bothersome "annoyance" variety. Some are quite miserable and suffer a poor QOL. And others finally quit.
You never know which group you'll fall into unless you try.
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Simbobby - experiences with the AIs vary so much! I've found that with a couple of modest exceptions the side effects came after I'd been using Femara for over a year. I was given one 3-week break (which didn't do much, frankly) and then switched to Aromasin, which was even worse. When I went back to Femara a) things settled down (a lot) and b) I found a couple new tools for substantially reducing joint pain. Mostly at this point they are an annoyance and NOT something I think about or am aware of every day.
I'm not crazy about the overall effect of eliminating estrogen from my body and would walk away from that aspect in a New York minute if I thought I could safely do so. But I can't and I won't.
I think the big thing is to go into treatment with an open mind and to go with the flow - change medications if needed, experiment with ways of minimizing whatever side effects crop up and keep your MO in the loop as to what you experience.
Finally, exercise is vital; it helps keep your joints moving, improves mood, and allows you to feel smugly superior to those who don't exercise (just kidding... ).
PS - I did take Femara during radiation. My RO said there are arguments for both sides but since I was already on it and doing well it seemed safer not to stop for the 7 weeks. I was fine with that!
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I could hardly wait to take Exemestane. If I read about SEs on here, it did not register. My fear/terror was cancer. Anything that would help me LIVE I was much more than willing to do.
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I've been happily taking my 20mg tamox pill without side effects for coming up four years now. However, I had a stroke recently which was caused by a blood clot in the brain. Fortunately I've made a full recovery, but knowing blood clots are a big SE of tamox, I'm seriously considering halving the dose. My cardiologist says cut it out all together. So, the option of a slow death with bc mets compared to having a severe stroke that either kills me, or worse, leaves me badly incapacitated is something I'm weighing up. I sort of prefer the former.
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Travel, sorry to hear about your stroke. That can be very frightening, my Mom had a stroke about a year and a half ago. Scared us all; she was so lucky we got her to the emergency room as soon as we realised she wasn't making any sense. She had a complete recovery. Now she takes eloquist. She never had breast cancer or any other health problems just high cholesterol and elevated blood pressure which are under control with meds.
I did AI drugs for 4 years and I am done. Still have pain and weakness in my right hip joint. I notice it at night. I am not on any meds, my blood pressure, sugar and cholesterol are normal. But those AI drugs really aged me. I sure hope the cancer doesn't come back, it has been 7 years. You never know but I feel so much better now I am off this stuff. This year I'll be 60.
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Thanks for that meow. Really glad to hear that your mom made a full recovery. The aim is to get medical attention asap. It's a bummer for me to have to consider not taking a drug I have no side effects for. That's why I'm thinking of halving the dose. Sort of like having a bet each way!
Good on you for your seven years NED.
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Travel, can you take an Al? I don't believe they have the same risk of blood clots.
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100% ER/PR positive. Femara didn't work for me, lots of joint pain. Taking Aromasin, hopefully for 10 years. I will take it for life if insurance allows. I love hugging my great nieces and nephews, my belief is Aromasin is fighting the cancer cause I'm 7 years NED. I have hot flashes, but lymphedema is more annoying than hot flashes.
My decision is to stay on meds cuz they are working, or helping. Maybe they only help mental health.
No regrets. I made decisions I could live with.
Just loving life day by day.
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Travel- I had blood clots on tamoxifen too. MO discontinued it immediately and I was put on Xarelto for clot prevention and switched to AIs. What do they have you on for clots? Have you tried any of the other AIs?
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pupmom and Lula, thanks for the replies. Men are generally not prescribed AIs because they don't appear to be as effective as tamox, which is the gold standard for men. My pal Rob did four years on Femara before progressing to mets and he wonders why he was prescribed that drug.
I'm now on a blood thinner, blood pressure lowerer and a statin. Taking these along with the tamox, but will talk more with the medical team before I decide what to do. Decisions, decisions!
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Traveltext, you are a hero. Thanks for representing the masculine side.
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Thanks sbelizabeth, but I don't really have any competition from other male BCpatients on BCO. Perhaps that's why I hang around. Plus, I've learned so much about real heroines over at the IBC Lounge where many people are really doing it very tough.
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i just passed my third year post surgery. I am grateful. I have tried ALL of the hormone blocker pills. I tolerated Tamoxifen the best but developed a blood clot while I had Covid so now I am on Aromasin. I am swollen in my legs like a blow fish. I am about to the point of giving up all these drugs and take my chances. This is awful. I am tired of a poor quality of life. I am going to die of something. I would rather enjoy whatever time I have left and not feel like a grumpy old, tired and dried up prune for the rest of my life. I find myself angry over this. I just want to be normal again.
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Babs, what was your diagnosis? And if you don't mind saying, how old are you? That all factors into your metastatic risk and how much risk reduction you get from these meds.
In the end the decision on whether to take or continue to take Tamoxifen or AIs is a question of weighing the risk reduction benefits of the meds against the side effects. And that's a different equation for each of us.
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ThIs decision is very personal and one many people will critique. It really boils down to your own diagnosis and comfort level on cancer returning (which it inevitably does). Personally, after three years of cancer I am deciding not to take anything with more side effects. I tried Tamoxifen and experienced terrible knee joint pain. As a runner and workout guru I stopped taking it. After three years of being a slave to cancer, I too am struggling with this decision. I am currently healing from my recurrence (diagnosed in 2018), a completion mastectomy and radiation therapy. I have decided to enjoy my six months before my reconstruction surgery free of any estrogen blockers or meds. Post radiation, my research and education tells me taking an estrogen blocker is to prevent any “rogue” cancer cell that could have broken off. I am alive and choosing to focus on reducing stress, returning to my workout regimen and being free from the shackles of cancer, including the medications everyone suggests. I want to enjoy whatever is left of my life on my own terms. Be what it may. 💪🏻
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Mati_Thori,
Small correction; breast cancer does not inevitably return. The recurrence rate, across all stages, is generally in the 30% range*. This is not individually predictive and is higher than we wish, but recurrence is hardly inevitable.
*This may not be the most current stat
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My mom had a mastectomy on the right side, and a couple of years later, another primary popped up on the left side so she had another mastectomy. She lived happily flat for 35 more years and died of generalized oldness when she was 96. Recurrence is not inevitable.
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