Has anyone quit or reduced dosage of the hormonal therapy?
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It is truly a struggle to know what to do. I like many others have reduced my tamoxifen to just 5mg per day. That has lessened the side effects but has increased the thoughts of potentially getting a recurrence or a new primary. It is very stressful. How do we balance? It weighs on my mind when I stare at that pill every day.
Currently, I am awaiting for my pathology report on a D/C that needed to be performed because my uterine lining had thickened to 14mm which could be attributed by Tamoxifen.
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mom2bill- uggg I am sorry you didn’t have relief after stopping tam. I really hate the way it makes me feel and I totally understand the desperation for a reprieve. On a side note, I use a magnesium lotion on my calves before bed and it really seems to help my leg cramps. All the best as you start back up on tamoxifen.
Old lady blue- I hope you have the best party ever for that birthday, you absolutely deserve it!!
Molliefish- I am sorry you are dealing with a new primary. Cancer is such a sneaky little jerk. I so agree about QOL, mentally and physically. It has to matter. I get so tired mentally when thinking how much my body has changed. If stopping or altering the dose of tamoxifen can bring back a little piece of the old me I am willing to take the risk. I hope your upcoming surgery goes well.
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Dani444 the magnesium cream and a pair of good quality compression socks work wonders for me when the leg cramps fire up.
Also, I will echo Lillyishere - I had also heard that Tam not the best option for ILC
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Yes, I cut the dose in half after 6 months (Arimidex, also tried Exemestane). And in consult with the oncologist , I will stop altogether in a few more months (total of 13 months of what I call "the evil pill"). I have Rheumatoid Arthritis and I understand it's just a bad combination. I believe I have now had every side effect except bone loss (i negotiated a good rate so I could have the bone density test more frequently).
1. We all know the AI's are amazingly effective - cutting the risk in half of metastases.
2. BUT I am not sure we all know that the benefit is not spread evenly over the 5 years - it is "front end loaded" so that much of it is in year one, then diminishing returns. So depending on your risk profile from Oncotype or something else, 5 years may not make a lot of sense (or it might). (this distribution of benefit was told to me first by Duke Univ oncologist and then confirmed - albeit reluctantly it seemed - by my local MD)
3. My side effects have not 'evened out' - they've continued to worsen. So in addition to my afternoon "fatigue wall" and "extra" joint pain, my list includes severe dry eye that may risk damage to eyes after 2 years on AI, bizarre tendinitis I have never had, elevated BP, "trigger finger", various muscle issues and so on.
Finally , what is so frustrating to me is that while you can find dozens of studies being done to LENGTHEN the time women take this, "they" have not even tried to find the lowest effective dose - and as one MD put it, whatever that is will surely be less than what I have been taking. I believe in my heart it will be like birth control pills - it took so long to lower the doses that women for decades took 20-30 times higher doses than needed. I think that will be the AI story ---
but I am unlucky in that I have Rheumatoid but very very lucky with the type of cancer I got (mucinous) and a very favorable risk profile. But 13 months will be it for me and the AI.
Wishing you all the best
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I quit Letrozole after 6 months. Now, 2 1/2 years after quitting, I have breast cancer again, in my other breast. I had IDC in 2003, followed by two lumpectomies, 24 nodes removed, all negative, (due to failed SNB), chemo and radiation, then ILC in Dec 2018 in the same breast, treated with mastectomy in 2019 and Letrozole.
I don't think staying on Letrozole would have changed things, maybe delayed them, but I will never know. I also wanted a bilateral mastectomy in Jan 2019, but my surgeon at the time refused to remove a healthy breast. I don't look back at things I can't change, only things that I can learn from.
On the upside, I switched to a breast surgeon at a local hospital, from a city cancer hospital where I was treated in 2018 and followed until I switched. I had an appointment with this surgeon prior to my diagnosis, which was great because the previous two times I was diagnosed, the surgeon was assigned to me. I really like and trust both my breast surgeon and plastic surgeon. I even saw a medical oncologist per my new breast surgeon's request. Ironically I made the appointment with the oncologist for the day after my mammogram expecting to just re-visit the Letrozole issue. Instead, I came to that appointment knowing my mammogram was BIRADs 4, and was already scheduled for a biopsy. I was pretty sure I had cancer again. The oncologist said after going over my history and the reasons I didn't want to take the Letrozole, that we can go over this again, once I know exactly what I am facing. In other words, after I get the surgical pathology report. I will have my surgery in mid-October.
*Someone, I believe on this thread, said to me when I was trying to decide to stay on or go off: "Just make sure you will not blame yourself if you stop the Letrozole and the cancer comes back!" Great advice. I don't blame myself, for me it was the right choice. My cancer didn't come back exactly, but I have no idea, if the Letrozole would have prevented the cancer in my opposite breast, since it was very likely there in 2019, just not detectable. This time I have DCIS with microinvasion. I heard there are studies that are using Letrozole instead of surgery for DCIS. Doesn't make a difference in my case. I am moving forward and not at all feeling regret with my choice.
Treatments are totally PERSONAL! We can hear what others do, get comfort in sharing experiences, but in the end, we are all individuals and must choose our own path to take.
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beachnc, Wow, I never knew that about the AI's, meaning you get the most benefit in year 1! How come they don't tell us that! Sheesh! I managed 3 years on letrozole, and that is it. I just can't do it anymore. Mavericksmom, I am so sorry you must face this again. Thank goodness, it was found. Best of luck.
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I'm confused as to how the most benefit would be year 1. Our risk of recurrence itself increases each year due to BC often comes back so the further out you go, the greater risk it will come back. And, the AI decreases the amount of estrogen the body produces so it slows down any growth. I wonder if what they mean is the AI still cuts your risk but not as much because the risk goes up each year out. So, it is continuing to slow down any cancer growth which increases the likelihood of us being alive longer but not stopping recurrence. And, after 5 years any cancer that is there will then be found but can be treated which is the reason we take it 5 years.
AI also do not decrease risk of mortality compared to tamoxifen but it reduces recurrence which means we will likelylive longer without a recurrence if on it.
I do agree we are taking more than may be needed. These drugs are unfortunately too cheap for anyone to study because they will not profit from selling it.
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Mavericksmom, so sorry to hear you are going to be doing the cancer battle again. It's hard to know when the cancer actually started in your other breast. Is it "new", was it there and just undetected, etc? I've had 3 different doctors tell me 3 different ideas on when my tumor actually started. I wonder if doctors are daily taking their "best guess" in trying to help their patients?
Edwards750, thank you for your post earlier when I was trying to decide to stop my AI or not. I appreciated very much your comment: "Good luck in your decision. Do what's best for you and your husband. Life is too short to do otherwise."
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oldladyblue, my recent Dx is not a recurrence of the ILC I had in 2018/2019. I had IDC in 2003, and it is similar to that. This time it is high grade DCIS with microinvasion. I don't regret not taking Letrozole one bit! I have no intention of taking an AI after this surgery. Of course, that isn't etched in stone. Honestly, after I got my Oncotype score in 2019, there was such a small difference between taking an AI and not taking and AI, that I didn't see the point of taking it.
I do not like to mess with my hormones, and health wise, I think not taking them allowed me to be much healthier than I would be had I taken Letrozole longer. My sister takes an AI and has had no ill effects. To me it is personal preference, and each woman needs to evaluate if an IA is beneficial for them or not. It really doesn't matter what anyone else does or doesn't do.
I feel extremely lucky that my cancers were all found very early.
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I too am confused the they AI’s are most beneficial in the first year. I was told that the radiation as well as the chemo hangs around for quite some time and I would think that would stretch out the chances of early reoccurrence.
I take a half of a letrozole Monday/Wed/Fri. That’s all I can handle and have any quality of life. Some weeks I try for a 4th dose on Saturday or Sunday night but the side effects are awful and i have very painful arthritis in my shoulder.
I am also concerned about my eye sight. Has anyone experienced a sharp decline in their eye sight
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Mavericksmom, what is an Oncotype score and how does it effect reoccurrence?
I completely agree, it’s a personal choice, just like a lumpectomy versus a mastectomy and implants versus nothing. If there was 1 way to approach cancer there would only be 1 book, … or 1 website with the knowledge and all the answers we need.
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trippositive, Oncotype Dx is a test on a cancerous tumor which gives an indication as to whether or not chemotherapy would be beneficial. It also gives scores for recurrence when using an AI or Tamoxifen. Oncologists go over the results in detail with their patients. You can get more information simply by Googling Oncotype Dx.
Hope this helps.
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I started exemestane 25mg middle of Aug after taking month break from anastrozoleand after seeing PA for my 6-month visit. I've tried the other two over 2 and a half years and like others can't stand the SE. I have a new oncologist that I've never met. The one I had left the practice over a year ago, so I've just been seeing a PA. surprise surprise, the PA I've been seeing got me an appt with him for my next visit. I say that because I told her I was thinking of stopping all AI's. Anyway, SE no different on Exemestane so I've gone from every day to M,W,F. Some is better than none, I guess. Has anyone noticed that these pills make you look (and feel) old before your time? I saw a picture of myself that was taken in 2019 before I started AI's and I looked a hell of a lot better back then.
Trippositive, my eyes are dry, itch and if I read too much get blurry. Had an eye exam, dr said they were ok and just to use eye drops.
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Similar to the one-year thing, I had a Dr. tell me that the AIs starve the cancer than it dies. I don't believe it. Why then are they extending the time from 5 years to 7, then 10, then as long as you can tolerate it. Because people are getting recurrences after they stop. I'm afraid the cancer is just dormant. I am on 28 months of struggling, constant muscle pain. I went from every other day to every day, because eventually I felt it didn't make a difference, I was in just as much pain, so might as well take the full dose. It seemed skipping a dose may have been contributing to my insomnia, rather than being on a consistent schedule. I just don't know anymore. No problems with my eyes. I have progressives, same ones as before diagnosis and haven't been to the eye dr. in 4 years. And I had chemo too.
trippositive, I am guessing you didn't getting an oncotype because of your diagnosis I am assuming of triple positive, which automatically gets chemo.
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I'm still trying to decide whether to start anti-hormone therapy. I had one 1 cm tumor removed, nodes negative, had radiation therapy, Oncotype score of 12. Tamoxifen is the option I'm considering, since I have osteoporosis. I'm 60 years old, and in otherwise good health and am active. I'm considering trying tamoxifen with the idea that I will definitely stop it if it's intolerable. But now I'm worried about even starting it. I've read some comments from women who have had experienced side effects AFTER stopping. Does it screw up the body for life, I wonder? I hate taking any meds because I do not want to support Big Pharma in any way.
I would love to hear from others about whether you think that the side effects indeed do go away and your body gets back to normal, once you stop taking the anti-hormone pills. Please let me know your thoughts! There's nothing like first-person testimonials ... I trust what real women have to say more than doctors pushing a drug because that's the "standard of care". Yes, it's the standard until people suffer for years and it's finally determined that it's actually detrimental. Thank you, fellow BC women!
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nomed, what isthe grade of your tumor
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I took Tamoxifen for the same reason - I have osteoporosis. I only had to take it for 5 years. I am 11 years out from my DX. When my MO told me I could cease taking it she said to do it gradually which I did. Zero problems for me.
I should also say though that a number of ladies had severe side effects taking the drug. I was fortunate mine were minor.
Frankly I don’t care if it supports Big Pharma or not it’s our lives we are talking about. The choice is yours of course just don’t look back and wonder what if..
Diane
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nomeds, to answer your question, I feel that all of my side effects went away after stopping the AI I was on, except I still have thigh pain at night (lighter than it was), which I never had at all before AIs.
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I believe it was a grade II. TY
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TY to everyone who replied to my initial post. This community is a great resource.
Another question ... has anyone had any experience with taking a lower-dose tamoxifen? 5 mg (or even 10 mg) rather than the 20 mg that is routinely prescribed across the board.
Thanks everyone!
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@Nomeds, I take 5mg of Tamox daily. My choice, which my MO supports. I’ve been on the same dosage since I started taking Tamox about a year ago. I had hoped to increase to 10mg daily, but the side effects I’m experiencing have held me back. Some of the side effects have decreased or disappeared (dry mouth, night sweats); however, some remain (hair loss, weight gain, dry skin and nails). There may be some brain fog as well, but it’s hard to say with everything else going on that could be contributing factors. I’ve spoken at length with my MO and while it’s not his preference he supports my decision. Particularly because of my specific pathology, OncoType Score, etc. Best of luck to you
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I am currently on 5 mg of tamoxifen. I started out on 20 mg but after two months and extreme side effects, I had to quit. After five weeks of no medication, I went back onto tamoxifen but only at 5 mg and haven’t increased it since and its been about 2 years now. I currently have very little side effects. However, I did have to get a D&C a few months ago because I was getting cramping and slight bleeding in between my periods. A biopsy showed that I had benign polyps in my uterus. My oncologist said that the polyps were a side effect of tamoxifen. She would like it if I can increase to 10mg but she is accepting the 5mg rather than nothing.
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I've asked my MO if I can start at 5mg dose. She seems unwilling and is saying she recommends starting at 10mg every other day for a week, then daily for a week, then 20mg daily. That doesn't sound like much of a compromise. Maybe if I tell her it's either 5mg/day or nada. If she says no to 5mg, then I don't know what I'll do.
I don't know whom else to ask for guidance. It's a hard thing to figure out. Doctors are so pro-medication. There's just not enough data for my taste. I can't forget that my using an estrogen patch for years after my hysterectomy very likely contributed to getting breast cancer to begin with. Just seems drugs are the culprit too often, and we find out too late.
TY for your thoughts and input.
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I take Letrozole and so can't comment about Tamoxifen, but I absolutely hate the side effects of what I take and agree with you wholeheartedly about the doctors and drugs thing.
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nomeds, Tamoxifen is an older drug and there are clinical trials that show taking 20mg has reduced recurrence for estrogen positive BC. Unfortunately there haven’t been any trials for a lower dosage other than those with DCIS. I would take 20mg if I could have handled it; the possibility of a new BC or a recurrence is always in the back of my mind. If you start taking it and you get unbearable side effects, then you can talk to your doctor about reducing the dosage. I do hear that the majority of women have little to no side effects on Tamoxifen. You just might be one of them.
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TY, pinger, for your response. This is a good reminder (to myself) that doctors only go by completed clinical trials and that's the law for them; I must remember that that's where they're coming from. I get so frustrated that after all these years, they still haven't studied a reduced dosage. I've read bits here and there mentioning "this needs to be studied further". Any way, TY for your words, it was very helpful.
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I know that they have lowered the tamoxifen dose since it was first introduced. Apparently, the toxic effects were too severe at the original dose. I think there is a ethical challenge with lower dose studies on invasive cancer patients . If you lower the dose by half and then experience a 10% increase in Stage IV patients, then you have proven that dose was insufficient but you have also shortened the lifespan for the women in your study.
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TY, findingoptomism, for your input. That all makes sense. But my brain still can't get around the fact that they still haven't studied a lower dosage in women like me, Stage 1a, no lymph node involvement, 1 cm tumor, etc. I feel like I'm beating my head against a brick wall. So, for now, I've decided to give in ... after weeks and weeks of struggling with this. I'm going to do as the doc has suggested and try it. If I get unbearable side effects, I'll just stop it completely if she won't agree to a lower dose.
Let's keep this conversation going, ladies.
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There is no money to be made by the pharmaceutical companies in studying the effectiveness of lower doses. These drugs are approved based on the “highest tolerable dose" (not sure who exactly gets to determine what is tolerable…I guess as long as trial participants don’t die, become bedridden, etc.), so there is no incentive for pharmaceutical companies to invest in studying the effectiveness of lower doses. It's all about the $$.
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I just reduced my T dose from 20 to 10 with my doctors blessing. I gave 20 mg a full year. My depression got so bad I wasn't suicidal but was thinking about it. Hard to explain. I took 2 days off of T and the fog immediately lifted. So we knew it was the med. I am much more like my old self at 10 mg. My doctor said "so it turns out your brain needs a little tickle of estrogen to be happy". He said 20% of women can't tolerate T but he said 10 mg was better than nothing.
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