Has anyone quit or reduced dosage of the hormonal therapy?
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What just happened, me too. I'm struggling really bad, in a lot of pain throughout my body. I'm trying every other day. Have you thought about Tamoxifen? I'm reluctant because I've read studies that it is not as effective for ILC, but consider it another option if I just can't take the Arimidex.
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JRNJ, so sorry you're having so much pain on the arimidex. Looking at your history, it seems like your your recurrence risk might be a bit higher than mine, so it's probably important to find something you can tolerate. I've heard the same about Tamoxifen being not as effective as AI's, but that doesn't mean it wouldn't provide any benefit if you tolerated it better. Quality of life is important too. I talked to my MO about going on Tamoxifen, because I have osteoporosis and didn't want to do the Prolia shots. But he wanted me to stay on an AI. He wants me to try letrozole now, and said some people tolerate it better than arimidex. I am being decidedly pig-headed about it. I don't think it is going to make much of a difference, and don't feel like adjusting to something new right now (trying to get the other conditions in check). The drop in estrogen is the problem, and that is going to be the case no matter what I take. I wasn't even close to menopause when I started all of this, so for me it was a jolt to the system, to say the least. I think the side effects would have been a little less if I'd been able to go through menopause naturally before the diagnosis. I imagine it's a similar situation for you.
I started off doing everything I was told, and just dealt with the health issues that ensued. But I've grown to hate that little pill and how it makes me feel. Plus if ILC is more likely to recur later, it's likely to happen when I'm off the AI, though I've heard of women taking it for ten years or more.
I would like to spend some time trying to get back to the healthy state I was in before my diagnosis, and then maybe revisit the AI. I apologize to those women who have more advanced disease than mine if I seem to be complaining too much. I realize things could be so much worse, and my thoughts are always with you!
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I’m actually deciding whether to take an AI again - was on Armidex for just 2 1/2 months before my Covid-delayed BMX but was already having joint pain along with nasty hair loss and lack of desire, etc. Anyway I stopped it the day before the surgery (June 23) and haven’t taken it since. I’ve had some wound healing complications from the DIEP flap but finally mending well - I’m older, 63 and former smoker so lucky my skin/nipples survived it). My oncotype in left (ILC side) is 6 and it’s 11 on Right (IDC side) so no chemo needed nor radiation. MO said my mets risk is 6% without an AI and 3% with it. However she strongly encouraged me to try Letrezole and not to try substituting any kind of alternative approach (just healthy diet, exercise, a few supplements) in lieu of an AI. So, I’m thinking about it although leaning towards no meds due to QOL issues plus I have a demanding job so need to stay focused and it affected my concentration too. I also asked the MO whether the fact I took HRT for too long ( it’s all now out of my system, quit upon diagnosis in February) should be taken into account and if it made sense to measure my estrogen levels. She said levels would be too low since I’m post-menopausal so not a factor, studies show an AI sill reduces risk in older women like me.
Anyhow just wanted to share with women who’ll understand.
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abigailj, I totally understand where you're coming from. It's all a crap shoot really- you can have a low risk and still get a recurrence or a high risk and never see a recurrence. We take the pill out of fear, so that if that day ever comes we can say we did all we could to prevent it. A 3% risk reduction might seem like a lot to some, and not worth it to others.
The AI's are the best weapon against hormone positive breast cancer- I get that. But the big picture has to be taken into account. If you're tired and achy all of the time, you're less likely to exercise and take care of yourself. At least that's been my experience. Add in some stress from work (I also have a demanding job) and it can become a toxic situation. Even these things I could potentially deal with, but I've just been dealt with a bad hand in terms of family history, and it's the aggravation of other conditions that I can't deal with.
There are also plenty of women who take the AI's with little to no side effects. A few months may not give you enough information on how it would be long term, since sometimes the side effects go away. It's not an easy choice, but I hope you find a decision that you're peaceful with. I'm still not at peace with any decision at all, which is why I keep trying to rationalize it 😉!
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@whatjusthapoened, thanks so much for your insightful response Yes, it really is a totally personal choice for each woman. I don’t think I’d hesitate to try taking an AI if I were younger and may still opt for them. This is going to sound really inane to many but I’ve had thinning hair for years, tried everything except PRP for it without success and the AI made it so much worse - to me, that was ever bit as bad as the other SEs and I’m scared if I go back on an AI I’ll wind up having to wear wigs for the rest of my life sooner rather than later.
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abigailj, that's a valid reason! We already have to give up so much! I have very fine thinning hair too, but so do both of my parents, so it's genetic. It's distressing to have it fall out. My Mom struggles a lot with it. I lost a lot last year but it seems to have slowed down at least. I take a lot of vitamins and I take collagen, which I do think helps. There's a lot of threads about hair loss on this site with a lot of helpful suggestions. Probably a dumb question but have you had your thyroid checked?
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whatjusthapoened, not a stupid question at all, yes, I did that around 7 years ago and I went to a derm who ordered a bunch of bloodwork about 4 years ago to see if any physiological cause but nothing showed up which I guess is a good thing... i do take collagen, B complex, D, biotin and C but they don’t seem to do anything (maybe it would be even worse if I didn’t...). I tried rogaine a while back, may give it a go again now that I take these other supplements and eat a somewhat healthier diet. I doubt I’m a good candidate for PRP but I’ll probably look into it - there’s a doctor not too far away from me who performs this proc and gets good ratings so i hope she’s ethical and tells me if I’d be a reasonable subject or “don’t waste your money “
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abigailj, I had to look up PRP to see what it was. I've never heard of that being used for hair loss-I'll have to read up on that. I hope it ends up that you are a candidate and that it works for you!
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I only came across it within the past year - it’s expensive and a few treatments are needed every year from what I’ve read but if I’m a reasonable candidate then I’m going to it. Of course I’ll tell you my outcome. I’ve seen discounts for PRP for hair loss offered in Groupon and Living Social- if there are any currently I’ll check into reviews of those providers and if good and not too far from me may try one of those instead. Please keep me posted if you decide to consider it also.
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abigailj, I will do that. I am hypothyroid and think my hair loss has a lot to do with that in addition to my genes. I've been on medicine for over 20 years for it, but It's always been tricky getting the dosage right. I was on too much medicine for several years which is why I suspect I have osteoporosis already. Now I think I'm on too little. I'm going to do some research on the effectiveness of the PRP with thyroid related hair loss to see if it would provide any lasting benefits. Do let me know how it goes.
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Risk reduction. Man of you have mentioned getting an answer on how much a given drug reduces risk and how that applies to you specifically. It sounds as if there is even testing for some drugs to make "risk reduction" clearer. What questions should I be asking about risk, how it applies to me, and if there are any tests. I am already fighting insurance (a year now) for genetic testing specific to BC. They denied the claim, saying that it had no relevance to diagnosis or treatiment. I am taking Arimidex and Ibrance, a year now. Joint isues were not bad initially, but seem to be getting worse, I'm also hoping that hair thinning is subsiding.
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BlueGirlRedState, I've wondered the same questions about risk. Did you have the Oncotype test done? That's where I get what little information I have. That and the general consensus that AI's reduce your risk by about 30% of whatever your risk is without them.
I know there is the Breast Cancer Index for those wondering whether or not to stay on AI's for a longer period, which is a genetic test done on the original tumor sample. I don't know what makes it different than the Oncotype-someone else will have to chime in on that. Then there is the Oncotype RSPC which is supposed to give you risk based on your Oncotype, but taking your other info (tumour size, age, etc.) into account as well as genes. I asked my MO if he could have that run and he said insurance would deny it, so it would be out of pocket. I let it go, though I never asked how expensive it would be. It's just an algorithm, so it seems like it shouldn't cost that much.
There are specific tests to determine how you metabolize specific AI's but I don't know much about them. Again, hopefully someone will chime in on that...
I had to fight insurance on genetic testing too. They denied my claim even though the results were positive and they absolutely affected treatment. They never did pay out but the genetic testing company cut me a break. Insurance even denied my daughter's genetic testing when she had a positive parent! They did end up paying hers though after an appeal. So keep trying-if you have a doctor to appeal it helps a lot.
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Hi Rah2464, thank you for your reply to my post. I think you are totally correct about the dosage level and reducing side effects by taking 10mg twice a day is a good idea. CYP2D6 could be, in my understanding, a metric of efficacy but not side effects so I believe your MO just confirmed Tamoxifen is effective for you, and it's nothing to do with adjusting dosage for side effects.
I am very curious to know why CYP2D6 test is uncommon. If Tamoxifen may not work for some people, it seems to me that CYP2D6 test could be mandatory for everyone who are starting on Tamoxifen. As it is actually not, there must be a reason and I'm trying to find it.
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New to this thread. Of course I ended up here today because of a bad exemestane day. Hot flashes and tears and mild anxiety, I'm sure partly caused by the insomnia I've been experiencing. I had 6 years of Tamoxifen; 2 months of anastrozole (had to quit for vascular side effect); and now 2 month into exemestane. My MO has suggested Effexor a number of times over the years. Today I'm considering it, but nervous for 2 reasons. Reading conflicting things about Effexor causing insomnia and weight gain. Already struggling with both in the last 4 months, as well as a first time spike in cholesterol since I started AI's. I'm really grasping at coping mechanisms to try to delay stopping treatment. Any comments on your experiences with Effexor for side effects? Thanks for any wisdom you can share.
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count_it_all_joy: Sorry you are going through this. Starting a new regimen is not always smooth. I started out on letrozole and lasted eight months and just stopped it three weeks ago. I'll start exemestane later this week. Back in January, the hot flashes were so bad, I was ready to stop everything. My doc put me on Celexa and it made the flashes better. Effexor is similar so you might want to try it. I also had one of those sweat cooling towels that I would wet and use during the night when I woke up sweating. Make sure your bedroom stays cool with cotton sheets and an extra fan, if needed. Good luck.
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whatjusthappened - I did have an oncotype test in 2016 to see if chemo would be helpful. According to the "test" the score was high enough, that chemo was considered a good idea. As it turned out, it had very little effect on the tumor. I did not know it would test for effectiveness of hormonal treatment as well. I keep hearing that once menopause, the body produces very little estrogen, but I guess any estrogen is considered bad. Is any level bad???? But there is no monitoring to see what the levels are before Arimidex and with Arimidex
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BlueGirlRedState, the Oncotype does give you a recurrence score that tells you whether chemo would be effective for you, and it also
gives you a percentage that is supposed to indicate your risk of recurrence while on AI's or Tamoxifen. That's the middle column (it's hard to read but you can see that it says "with AI's or TAM alone"). My recurrence score and recurrence risk numbers happen to be the same, but in most cases they are not. It unfortunately doesn't tell you what your risk is without AI's, so we're left trying to figure that out on our own. I wish they would put that number in the report, but I suspect that it's because taking an AI or Tamoxifen is considered the standard of care and they don't want women refusing it.Since estrogen fuels the growth of hormone receptor-positive cancer cells, the goal of treatment is no estrogen in the body. That's why the side effects can be so bad, since estrogen plays many important roles. I've never heard of oncologists testing estrogen levels to determine the effectiveness of treatment. Now that you've brought that up, I wonder why not. As far as I can tell, everyone is given the same dose, so I imagine that it's effectiveness is going to vary based on metabolism, body size, etc.
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whatjusthappened - thank you for your answer. I will ask in a few days about what the score said for recurrence. But my oncologist strongly feels each episode (twice left, now right) is a new occurence rather than recurrence, but also says there is no real way of knowing. So where do these scores come from if there is no real way of knowing? Supposedly chemo should have been beneficial, but probably was not. Interesting comment on dose and body size. I also wonder if some have naturally higher levels of hormones and if that was ever tested.
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Whatjusthappened, My report was 15, 14%, No apparent benefit. ILC usually scores low. But note, the clinical trials for node positive are still ongoing, that is why the node negative reports actually quantify the chemo benefit and the node positive reports don't. "no apparent benefit" The SWOG trial was very small, 367 people over 5 years. My first two opinions didn't want to give me chemo, but I wanted to be aggressive, than my third opinion, Sloan said yes. Who knows if I really needed it, or if it did anything, but CMF wasn't as bad as other chemos. Now that I know how horrible these drugs are I'm pissed that they assume you have to take them and make chemo decisions based on it. Chemo was a blip in my life, this could be for the rest of my life. The pleomorphic thing bothered me too. Some Drs. ignored it, Sloan did not.
So I'm currently on every other day Arimidex. My MO said to try every third day, but I told him I could probably tolerate every other day. When I take it every day the pain gets really bad. I asked him to test my estrogen in July when i was on lupron and aromosin. It came back less than the method detection limit, 5 I think. I read there are more sensitive tests. I still am that person that wants to be aggressive, regardless of what any of the reports tell me, they could all be wrong, but right now its a matter of being able to get out of bed and function first. I'm still wondering what is better, every other day on AI, or should I try Tamoxifen. My gut is telling me stay on the AI every other day. I read, probably on this thread, it has a 54 hour half life,
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BlueGirlRedState, to get the Oncotype score they analyze certain genes in the tumour sample and plug the results into their algorithm. You'll notice that the recurrence risk says that it's with an AI or Tamoxifen "alone". Meaning, if you've had chemo, your recurrence risk is theoretically lower than that number. It would be interesting to see if your Oncotype scores for each occurrence are similar or very different. Might give a clue about whether they were actually recurrences or new cancers, though I know that recurrences can sometimes present differently than the original cancer.
If you've had three separate occurrences, I really don't understand how your insurance company can get away with refusing genetic testing.
JRNJ, I didn't know that the node-negative Oncotype report actually gave a number for chemo benefit until I saw you post that on another thread. It scares me a bit how much they rely on that Oncotype score, especially with the clinical trials bring so limited for node positive (and ILC, for that matter). My MO tells me all the more reason to stay on the AI. I'm taking mine every other day as well. As much as I fuss and say I'm not going to take it at all, I eventually scare myself into taking it again. Every other day will have to do though, as I can't handle it every day. I'm glad you said that your MO is ok with you taking it every other day. I made that decision without talking to my MO about it, but I have an appt coming up and will discuss it with him then.
I definitely would have pressed for chemo too in your situation. I don't think the Oncotype was meant to completely take the place of the clinical presentation. How are you doing after your recent surgery?
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whatjusthappened - I only had the Oncotype done once. This was to help decide if chemo would be beneficial. That was the second occurence. Are facilities required to preserve biopsies? Would there be a way to compare the cancer in 2009 (left, lumpectomy, radiation, tamoxifen) with the one in 2016 (chemo, bilateral, tamoxifen. initially AI) and again in 2019 (r-axilla, Ibrance and Arimidex). It seems like the oncologist said that even if they could be compared cancer tends to mutate so much that there is no way of really knowing. I am still waiting to here about the denial for the genetic test specific to BC. As far as I know, the lab that did the test is appealing the denial. Insurance sent me paperwork, but I dont now why they want my opinion, it seems like it would be the oncologist and lab that would have the answer. I have no expertise, even if I have a lot of opinions.
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BlueGirlRedState, I do think they keep the samples (if they have enough), but the Oncotype test is very expensive, so I doubt they would go back and test at this point. I don't think it would change anything treatment-wise, which would be the only reason they would do it. Like you said, cancers can mutate, so unless the samples were all exactly the same it wouldn't tell you much anyway.
I hope you get good news about insurance paying for your genetic testing. Insurance companies have certain criteria about whether or not they consider someone a candidate for genetic testing, and if you don't meet that criteria they will deny you. It might even be their policy to deny everyone the first time it's filed. Having two (or more) primary breast cancers is one of the genetic testing guidelines. They have a list of the guidelines for genetic testing on this site. It would be good to look through it, since you might meet other criteria as well.
Would your oncologist's office be willing to help you with the appeal? Or even a patient navigator might be able to help. When I was going through my appeal, it was my breast surgeon's office that fought for me with my insurance company. They were truly wonderful in their efforts, even though the insurance company still refused. In my daughter's case, it was the appeal from the lab that got insurance to pay.
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"It unfortunately doesn't tell you what your risk is without AI's, so we're left trying to figure that out on our own. I wish they would put that number in the report, but I suspect that it's because taking an AI or Tamoxifen is considered the standard of care and they don't want women refusing it."
Whatjusthappened, my MO told me that on average, AIs and Tamoxifen reduce metastatic risk by approx. 1/3rd. For Tamoxifen, it's closer to 30% and for AIs, closer to 35%. This is confirmed by the PREDICT and CancerMath on-line models. You can input all your information and have the program calculation your metastatic risk percentage without any systemic treatment. Then you can click to add either Tamoxifen or an AI, and have the program recalculate your risk. The metastatic risk percentage will drop by approximately 1/3rd. The models are not precise enough to differentiate between Tamox and the AIs, but studies have shown a slight benefit to AIs.
https://breast.predict.nhs.uk/tool
http://www.lifemath.net/cancer/breastcancer/therap...
So this means that if your 9-year risk is 13% assuming your take endocrine therapy, then without endocrine therapy, it would be approx. 8.5%.
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Thanks Beesie for the info and links. They are very helpful. Why is my risk lower without endocrine therapy than with endocrine therapy, or is that a mistake?
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That's got to be a mistake. Your risk definitely will be lower when you add in endocrine therapy as a treatment. Are you sure you didn't change anything else?
The way the data is presented is sometimes hard to interpret because both sites include both the number of deaths due to other causes and the number of deaths caused by the cancer. So some subtraction is necessary. I find with Cancermath that choosing the Pictogram (you'll find it in the drop down menu for "Display As") makes it easiest to understand the results. With PREDICT, the similar presentation is if you choose "Icons" to show the Results.
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So this means that if your 9-year risk is 13% assuming your take endocrine therapy, then without endocrine therapy, it would be approx. 8.5%.
Beesie, this is the statement I was referring to. I figured the risk is about 20% without therapy, give or take. I tried both those calculators and the Predict model gives much better outcomes than the Cancermath model does with my information. Maybe because the Predict doesn't ask for the histological type of cancer. By the Predict model there is hardly any difference in mortality with or without anti-hormonal treatment (2% difference). Hardly worth the side effects. The Cancermath model shows the risk reduction at 32% like you said, though it shows the overall risk to be higher than the Oncotype report does.
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AHHH, sorry, you're right - my mistake. Since you'd commented about your risk being lower without endocrine therapy right after referencing the links to the on-line models, I thought you were referring to the results from the models. I never looked at my previous post, which, yes, is absolutely wrong. Proves I shouldn't write posts when I'm rushed.
So, to try again, this means that if your 9-year risk is 13% assuming your take endocrine therapy, then without endocrine therapy, it would be approx. 19.5%.
Sorry about that!
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I was just diagnosed the end of July and had a left mastectomy with an expander September 14. I saw the oncologist last week but she didn't have my test back - mammaprint - is what my BS ordered. The oncologist acted like it was a sure thing that I take femara. I am not too committed to taking a pill with side effects for five years. I have IDC around 2 cm; no lymph nodes affected. I had the mastectomy so I wouldn't need radiation so I don't want something else like a pill with side effects.
If my mammaprint says low, I am thinking of going without. The oncologist said that the test only shows whether the cancer might metastasized and not my chances of getting it in the right breast. I want quality of life. I work a demanding job now, but I do work remotely and I used to travel but that is stopped for awhile now. I can't imagine having all those side effects and trying to work. Also I am overweight now and am trying to lose which I probably couldn't do on that medicine or it would be very difficult. I am very on the fence. Any input would be appreciated.
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Beesie, that's ok, I figured as much. Just wanted to make sure you weren't figuring something in the equation that I didn't know!
marie914, I also struggled with the decision about whether or not to take an AI. I still struggle with it. Odds are you don't need it, but there are plenty of women with recurrences that thought they were low risk. You just have to decide if you're willing to forego whatever protection the Femara might give you and accept the extra risk.
I've never taken Femara, but you can look through the posts about it to see what kind of issues women on Femara face. Side effects are similar for all the AI's, but individuals might tolerate one better than another. Keep in mind that people who are doing well on a medicine don't often post about it, so the information is a bit skewed. I refused to take letrozole, but only because of a family member that took it and quickly gained a lot of weight.
Speaking of weight, the weight gain concern is real. I feel that some doctors trivialize it, but weight gain is more than a cosmetic thing, and can lead to other issues. This I've definitely experienced. Between the surgically induced menopause, stress, lack of exercise while recovering, and anastrozole, I've put on over 20 pounds since my DX. I can't blame it on just the medicine, but I know that it doesn't help. So my chances of dying from cancer are just traded for an increased chance of dying from something like heart disease. I have really been trying to lose this weight and it won't budge like it's done in the past. Maybe because of the medicine, but then again maybe not.
I don't know if you've seen this side by side chart comparing the different hormonal treatments, but Femara is not your only option. You will see on the chart that it is the only one that actually lists weight gain as a side effect. Not that everyone on it gains weight or that no one gains weight on the other ones.
https://www.breastcancer.org/treatment/hormonal/co...
There are women who have no problems whatsoever on AI's, and it's possible you could be one of them. You won't know how any of the AI's would affect you until you try them. And if you decide to try one and it doesn't agree with you, nobody's going to force you to stay on it.
Wishing you the best with a very difficult decision.
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whatjusthappened...sorry you are having problems with anti hormone therapy. I've never taken it but increased weight is associated with higher recurrence rates. Weight loss and exercise has been shown to lower recurrence rates by 40 percent which is about the same as aromatase inhibitors. IMO it's very contradictory to take a drug that makes both weight loss and exercise difficult. Of course this is a very personal decision, but just so you know I refused it from the start, lost 30 pounds and try to exercise daily. I'm 5+ years from my diagnosis. So far so good! Wishing everyone well...
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