Has anyone quit or reduced dosage of the hormonal therapy?
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JLBinPDX, here is one study regarding low and intermittent doses of letrozole.
https://pubmed.ncbi.nlm.nih.gov/26667449/
"... Significant estrogen suppression was observed in all dose arms with an average of 75% to 78% and 86% to 93% reduction in serum estradiol and estrone levels, respectively. There were no differences among dose arms with respect to changes in C-telopeptide levels, lipid profile, adverse events (AE), or QoL measures."
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I just want to point out something about the articles saying a reduced dose of tamoxifen is as effective as the full dose. That study was done on DCIS, not malignant cancer, which is what most of us had. A malignant cancer cell is inherently a meaner cancer cell than DCIS. No one knows how effective lower doses of these medications are for reducing the recurrence of malignant cancer. That study also had a pretty short follow up time, only a few years. Recurrence risk is for life.
That said, my doctor does think it's better to be on a lower dose than to be on nothing.
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This is what I read: A lower dose of tamoxifen may be able to deliver the same results with fewer side effects; however, this was not evaluated in women who previously had invasive breast cancer. No new testing has been done. I have been doing well splitting my dose 10mg in am and 10mg in pm. I did start out slow taking just 10mg for a few weeks then upping my dose to twice a day. Taking a 10mg tab instead of cutting a 20mg tab in half seemed to work better for me. Tamoxifen actually lowered my LDL cholesterol level, but did nothing for the triglyceride level. That has come down with diet and fish oil. Maybe if you cut your dose for a couple of months it will give your body time to get used to it so you could up your dose later. The first year you are still recovering mentally and physically. It's way too much with hormonal therapy added in.
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I love reading responses from everyone
JLBinPDX you are not alone. Poisedandpink you had a large tumor and two positive nodes like me
sometimes I feel like the odd one out having a large tumor, its nice to see someone close to my age with a similar diagnosis. Its also soo nice to hear your oncologist supports you! Im thinking of switching to liquid Tamofixen (Soltamox) instead of the pills and Id like to do 10mg every other day. If you dont mind me asking, how are you maintaining your weight and other SE's on Tamoxifen? Im hoping I gain a leg up with my fitness by taking Tamoxifen alone instead the AI+Lupron.
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Good questions on recurrence, effectiveness of AIs, dosing, treating SEs with more drugs. One I will add when I see DR net week concerns Exemestane/Afinitor. Seems to be the last resort. Is it not as effective? Are the SEs worse and more likely, so maybe try something else first? Tamoxifen........ The first time with BC (2009), Oncologist prescribed that even though I was already menopaused. He said he had more confidence in it than AIs, that it had a much longer track record. I had very few SEs from tamoxifen. The occasional leg/calf cramps mostly went away when I upped the Mg and lowered the Ca in the supplement I was taking. I read one article, wished I had bookmarked, that about 30% of women will have recurrence, and of those, 40% will become metastatic. I think this only looked at ER+. I do not know how many years were included, which would be important if diagnosis and treatment are getting better. But if those stats are accurate today, just how effective are these drugs?
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besides the join pain, muscle stiffness my hair is thin and fragile. I have bold spots on top. A neighbour recommended Nioxin. Anyone of you used this shampoo -conditioner? Comments? T
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HersheyKiss, thanks for the article. The worst part is reduced dosing, "resulted in a similar side-effect profile compared with standard dose." This is a big bummer. I just assumed that an every-other-day regimen or some reduced scheduling would result in less side effects.
I'm not sure why Anaztrozole/Arimidex or Letrozole instead of Tamoxifin after menopause, but seems there's more research on Tamoxifin than the other AIs. If anyone has articles about reduced or intermittant dosing of AIs for post-menopausal women, please link them. I'm a doctor, but not the medical kind so they're tough for me to read and understand, but I'll try because I want to get way down in dosage. That's a tough decision for someone that had triple negative in 2017 and the ER+ on the other side (new primary) in 2020. I've put up with these side effects for a year and now looking for a better path.
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Hi JLBinPDX, I'm postmenopausal and chose to take Tamoxifen because I have osteoporosis and some cardiac issues. For younger women Tamoxifen isn't good for the bones. My MO wanted me to switch to Letrozole because she said it would eliminate estrogen production the best. I would have to go on a bone building drug as well and didn't tolerate the last one I was on that well due to the side effects. Tamoxifen, inhibits the activity of estrogen by competitively binding to the estrogen receptor(breast), aromatase inhibitors block the conversion of androgens to estrogens and reduce estrogen levels in tissue and plasma. Research on reducing your dose, and its effectiveness, are older studies. I have not found anything current. I have read where some take letrozole every other day to reduce the dose on this site and their MO is okay with that regime. Saying all that I did have a hysterectomy last Feb due to the tamoxifen causing my fibroids to grow and it was a good decision for me. Today, 2-years in I am doing well with the side effects and do not want to change. I'm finally able to sleep most nights. I hope you can find a better path. Best wishes
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JLBinPDX, here is another study involving exemestane and postmenopausal patients:
https://pubmed.ncbi.nlm.nih.gov/9274439/
"Treatment tolerability was satisfactory."
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Thanks for this. The only thing is that it's from 1997, so data is 25 years old. I don't know if I should take that data seriously in regard to the improvements that have been made in all of these years.
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JLBinPDX, I believe that most of SE from AI or Tamoxifen are from inflammation these medicines cause in our bodies. Some people handle them better than others since we are all different. In my case, going from severe SE to less severe, more good days than bad days, is to take anti-inflammatory (over the counter like Mortin) anytime you feel the aches and pains are not under control. I am someone who doesn't like to take pills but an aspirin a day or occasionally Motrin has been helping me. If aspirin makes your blood thinner, skip it every 2-3 days. I am not a doctor but this inflammation from anti-cancer medications has to be controlled. On one hand, we reduce estrogen to starve the er+ cancer cells, on the other hand, these meds increase inflammation that cancer cells need to grow. I guess that's why they work up to 40% of cases. It is like gambling. I'm sorry I don't sound very optimistic but I am trying to figure out tricks to reduce SE in order to continue these meds.
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PrincessButtercup, did you see a retinal doctor? I am not yet even on these drugs but already I am very much on the fence about taking them. I have had bilateral retinal tears and laser photocoagulation (successful) and these drugs are known to cause retinal traction as a side effect. I emailed both my retinal doctors and plan to get a baseline exam before I even give them a try. They are a risk/benefit in so many ways for women. Plus I already have osteoarthritis in joints and the thought of having even more joint pain to contend with will most likely cause me to stop taking them. Quality of life and not more bad effects for the rest of my life is equally important.
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Racheldog, I'm on tamoxifen and had this discussion with my ophthalmologist. She told me they had seen issues at the higher doses, but not the 20mg. I retired, had cataract surgery, then BC. A lot of women blame tamoxifen for cataracts, but they start to develop in your late 40-50's and do not usually affect your vision until after 60. Unless you spend a lot of time in the sun without sunglasses. Hormonal therapy no matter what you are on gives most of us very dry eyes. I didn't have dry eyes after surgery. Fish oil is helping and staying hydrated. I see my doctor routinely as I know you do too. Good luck at your baseline exam. Maybe your doctor will want you to start at a lower dose and monitor your symptoms. You can always give it a try and see how you do if you get the go ahead from your ophthalmologist. You will also need a baseline transvaginal ultrasound, Gyn exam and a bone density. Your MO might say you don't need a Gyn exam, as mine did, but I went anyway. It is important with these meds. Best wishes.
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Hormone Therapy, one of breast cancer patient's difficult decisions!
I never liked the idea of messing with my estrogen. When I had IDC in 2003, I took Tamoxifen briefly, about 10 days. When I had ILC in the same breast in 2018, I took Letrozole for 6 months in 2019. I honestly wish I had never taken either. That does not mean I don't think it is beneficial for some women, I do. But I strongly feel that because they can't cure breast cancer, the medical community offers all the "big guns" to their patients because they don't want to see them get breast cancer again. The fact that it harms women too, isn't their concern. They just add more medications. Again, this might be the right thing to do for many.
Whether to have hormone therapy or not, whether to reduce it or not, ultimately depends on the woman. It is your life, your choice! Everyone needs to apply what their doctors tell them to their cancer, then make their choice.
Someone gave me great advice when I was trying to decide if I should continue with Letrozole or not. They basically said: "If you can say, should breast cancer return or metastasize, that you have no regrets on your decision to stop the AI, then do it."
For me, the harm of decreasing my estrogen levels was greater than the risk of getting breast cancer again. This is my personal decision, for my breast cancer. Each of us needs to make our own choice.
I should make a note that I recently also got the ok from my oncology NP to stop seeing her (at a cancer hospital about an hour away), and will only get mammograms to monitor for breast cancer. My scripts will come from my PCP or gynecologist. I am also very comfortable with this choice. I feel in control of my life and that is the way I like it!
In the end, there are no right or wrong choices, but the choices can be some of the most difficult decisions we make!
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A week ago, I reduced my hormone drug, toremifene, by half due to severe fatigue and severe depression. I'm still having the side effects, but maybe one week isn't enough time to see an improvement. I've been on the drug for three months after discontinuing OS+AI due to intolerable side effects. My oncologist wants me to give the toremifene another three months to see if I can adjust, but last night I didn't have it in me to even take the half dose. I have a horrific history of chronic severe depression that gets a lot worse during PMS, so it's affected by hormones. I don't think the oncologists understand the severity of my problem with depression. Hormonal therapy has seriously exacerbated it. My psychiatrist has me on stimulants to try to counteract the fatigue and depression caused by hormonal therapy, but now I've built up a tolerance to the stimulants and don't have much of an appetite. They don't even work well enough, and they make me feel drugged. I'm going to take a week off of toremifene so I can get off the stimulants because this just isn't sustainable. I'll try the lower dose of the toremifene again, but if I don't start feeling better, I'll have to discontinue it. It doesn't even feel like a choice because I'm having thoughts of death and am unable to function at work. I've become irritable and withdrawn, I get little pleasure out of things I used to enjoy, and I have little hope, interest or motivation. All of this really started crashing in on me about a month after starting toremifene. I had been feeling better when I was in between hormone drugs.
I hope my story doesn't scare anyone. My response to hormonal therapy isn't typical, and most people can do ok on it.
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Orangeflower: Please!! hang in there. Life isn't static...it changes all the time. Maybe you should get off all the drugs... take a break. You can always try again when you feel better. I am worried about you.
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Mavericksmom, I agree with much of what you're saying. The first time, 2017, that I had triple negative, I could not handle all that was going on and had found the right/nearly perfect oncologist to whom I could turn everything over to. That was not like me--teacher and researcher--but it was the best I could do. Cancer, chemo, lumpectomy, radiation was simultaneous with my adult daughter fully falling apart in her life and she and her 5 and 6 year old crazy active (adorable, fun) boys coming to live with me in my 1-bed, 560 sq ft condo with not a shred of outdoor space. I hope another 2017 never comes along. It was all I could do to just get through that year.
I thought all I had to worry about was a recurrance with the high rate for triple negative. But, surprise, another primary on the other side, ER+, PR+. That was an easy one to get through just last year. What hasn't been easy is dealing with AIs as I've been lucky to never having to take meds. It is not MY decision as to how I handle this. For those that say, "my oncologist won't allow..." or "my oncologist might allow..." ask yourself if you have the right oncologist. You are in charge. He/she/they are working FOR YOU. You're a team. I gave my treatment over to my oncologist the first time and we were a great team. The second time was different because I could handle it and the challenges with an adult child had improved--poco a poco--and we her issue, not mine. My aftercare is very much my thing, not my oncologist's. The question you present, Mavericksmom, is an important one. In the future, will you not regret your decision? I'm not yet there and don't yet know what to do about Anastrozole that has helped me (in a nasty way) gain probably a whopping 20 pounds in a year. I'm seeking alternatives to the med or the dosage. My oncologist supports whatever I choose. Those oncologists exist so if you don't have one, reconsider. You're fighting cancer, fighting recurrence, you should not have to fight your medical team.
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Orangeflower, I think you're telling it like it is. I, too, think that you need more help than you're currently getting. It sounds to me like you could use some assistance beyond your oncologist. Reach out for what you need and/or want, as soon as possible. It's hard for me to follow what AI you are on; is that toremifene? I haven't heard of this so can't even speak to it. I did listen to a podcast last night about AIs, mostly Anastrozole and Letrizole, and it was stated that side effects are oftne toughest the first six weeks and then settle in. I'm struggling a bit with my own after almost a year, but yours are significantly worse. Also, I'm not willing to get on the merry-go-round of treating this side effect with this drug and on and on and on. You need more help than you're getting. Reach out. Recommendations from your oncologist for other types of services may be a start--a PCP? A naturopath? A psychologist or pychiatrist? A counselor? A nutritionist? Social services at the hospital?
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Thanks guys. I think I'm going to stop both the toremifene and the stimulants for right now. My psychiatrist made a mistake in loading me up on stimulants, and now I'll have to withdraw from them, which means more fatigue and depression. Psychiatrists can be strange people...I've known several who are way too liberal with drugs. I should get a different one but I keep seeing this one because she's one of the only ones around who provide ketamine for depression, which has been very useful for me. The ketamine treatments don't seem to be making a dent in the depression caused by hormonal therapy, though. I do have a nice therapist, who seems worried about what's happening and wants me to get off hormonal therapy because of the adverse impact on my mental health. She thinks the suffering I'm going through is not worth a risk reduction of 5%. Unfortunately, I don't have much of a family or support network to help me. I do think that once I get this situation straightened out with these medications, I'll feel better. It's such a shame...In January of last year I was doing so much better after my course of ketamine treatments, I had a new lease on life, and I had decided I could discontinue the treatments. I was diagnosed with breast cancer one week later, and my life has never been the same since.
JLP, toremifene is a SERM, the same class of drugs as tamoxifen. I can't take tamoxifen because I need to stay on Wellbutrin, which interferes with tamoxifen working. They put me on ovarian suppression and an aromatase inhibitor at the beginning of all this, but I was miserable on that. They hoped that switching me to a SERM would be easier on me but it's not.
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Orangeflower, PLEASE, contact your psychologist or pharmacist before stopping any of the medications she prescribed cold turkey. Many drugs, anti-depressants, anti-anxiety medications can put one over the edge if stopped cold turkey.
I am not familiar with those you mentioned except for Ketamine which I used it on cats when I was a technician in the veterinary office.
I did have a bout with depression almost 40 years ago. I was thankful for having it because I was lucky to regain a normal mental state yet it gave me great insight into what depression is like. Logic was all but absent from me when I was depressed, in fact, I felt very illogical. I didn't even believe my husband loved me, or anyone loved me. It was as if I was in some kind of horrible world, a world not grounded in reality and surrounded in sadness and lack of motivation.
When I had cancer in 2003, I had a difficult time dealing with it. My mother and oldest sister were diagnosed shortly after me, adding to the stress. My oncologist prescribed Lexapro as I was aware that I was becoming depressed again, although not anywhere near as bad as I was years before. I was on Lexapro for about 6 months and decided I didn't need it any more so, I went off of it cold turkey! Bad decision! Thankfully, I managed to get through it, but only afterwards did my oncologist tell me how dangerous it was to stop it that way! It was the right decision to go off of it, but I went about it all wrong!
It is not enough to decide to stop a medication, we all need to know how to stop any medication we are prescribed SAFELY!!! I learned that the hard way, I don't want the same to happen to you!
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I think you have a point there, Mavericksmom. I just looked up how to stop taking Ritalin, and apparently it should be tapered, even if you've only been on it for a few weeks. I didn't realize that, but it makes sense. What I'm reading says that if you just stop it, it can cause depression and fatigue! I don't have much experience with this kind of medication, I just know that taking it every day is not for me. It's been over a month that I've been taking it daily, and I take a total of 40mg a day now, which apparently is an average dose. I didn't take any today and I've been feeling quite bad today. Ok, I'm definitely not going to just discontinue this cold turkey. Thank you for your help! Sending you big hugs through the screen!
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Hi Girls,
I'm sorry . . . I have not been on this thread in awhile . . . Orangeflower, I answered your message to me and then saw your posts here . . . I am so sorry for what you are going through. And Mavericksmom . . . . I absolutely love what you had to say. I've written about my experiences on different threads about my nightmare taking Tamox . . . I felt that I had to be open and honest about my experience in order to help others who are suffering as I did. And I am one of those "suck it up people" . . . . I just do what I am supposed to do and keep my mouth shut . . . but my experience taking tamox almost sent me off the deep end. As you said, Mavericksmom, ultimately, it was my decision . . . . of course my oncologist wanted me to stay on it ... wanted me to reduce the dosage . . . but it was all or nothing for me . . . reducing dosage, was that really going to turn around the SE's, really . . . its mission is the same at any dosage?? I still struggle with the decision I made . . . for me it was quality of life but then I think, wow, if it returns and/or metastasizes how will I tell my daughters, who of course want me to take anything that will keep me here in this world with them for as long as possible. It is hard . . . it really is . . .
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orangeflower, I always told my daughter don't go to a psychiatrist because they like to give out way too much medication. As a retired nurse I enjoyed working with a psychologist. He really listened and made recommendations for medication to the PCP after reviewing the medical history. I agree with JLBinPDX, maybe your MO can help you find the right person to talk to and help you with your depression. All the medications that you are on have side effects. They might be working against you. It takes time for your body to detox and you have to do it safely. Thinking of you.
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Mavericksmom: Thank you for pointing out that drugs should be tapered off...not stopped cold turkey.
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Orangeflower, sending you big ((((Cyber Hugs)))))
lleepak, I totally understand what you are saying!
This really is an amazing cyber community! I can't imagine going through breast cancer without all the support I received here and I am so very thankful to be able to help others whenever I can.
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It really is wonderful. I talk to my sisters more about things than I do my husband. His mother was "sickly" growing up and he doesn't deal well.
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Once I came off the Lupron all the weight I had gained flew off with my regular work out routine and mindful eating. I'm only 3-4lbs away from what I was pre-diagnosis!
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Racheldog, yes I went in to see a retinal specialist immediately when I started to see flashing lights out of the side of one eye. What I have is a partial vitreous gel detachment which is apparently healing on its own. I’ve had two appointments and will go back in a year again. Dr said that Letrozole is not known to cause eye problems and this is age related (I’m 60). Personally I feel like Letrozole affects every part of my body, but as long as the specialist is following it I will take that off ofmy plate of worries!
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How long were you on the Lupron? Just curious since our stats seem somewhat similar and we were both diagnosed young. I was on it for a few months, but quit due to numerous issues. I'm only on Tamoxifen right now and I think that's all I can handle. The side effects for me are bad enough with that alone.
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Princess Buttercup - I don't have a link, but you can google around. I have seen things on the internet that say Letrozole does cause eye issues and if I remember correctly it does affect the retina, gel, etc. I know there are articles out there and I've read them before. I also seem to think there was something fairly new that came out about the same issue: eye trouble and Letrozole. Like you said though, as long as it is being dealt with, maybe it doesn't matter what caused your problem, but I have seen things in scholarly articles that contradict what your eye doctor told you about Letrozole affecting eyes.
I agree with you wholeheartedly that Letrozole affects every aspect of a person's body! I don't think there is one single cell in my body that has not been affected in the negative by this drug.
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