I am concerned about quality of life with hormonal therapy.

In past, when I wanted to know about a drug I didn't waste my time talking to a doctor. Doctors are not experts on drugs! If I wanted to know about a drug I went to the source, the pharmacist, with my questions and that is where I got all the answers that mattered.

When the onc put me on tamoxifen I went straight to my good old local drugstore guy and said, give me the dirt on tamoxifen. He said, here in Canada many patients get their tamoxifen as the hospital pharmacy, so since he gives out very little tamoxifen he gets very little anecdotal feedback on the drug. And you know who will be getting the feedback...the pharmacist at the hospital.

I would suggest that any discussion about tamoxifen, new drugs and new drug studies should be had with your pharmacist. Drugs are his bread and butter! And if you get your tamoxifen at the hospital, then THAT is the person to speak to about concerns and other problems. If there is new information out there, those guys should have it.

Someone (sorry, too lazy to scroll back) said they were going off tamoxifen and maybe starting again at half dose, 10mg.

That is what I am doing. Half dose. No, I did not discuss it with my oncologist. This was an executive decision. I searched the net for information on WHY the standard dose is 20mg. Is it because it was the most effective dose? Never, ever did I find anything saying that it was the most effective, but rather the most tolerated. Because at 40mg women were so miserable they ditched the drug in droves. So it was halved, to 20 and more women seemed to stay on it. This is NOT suitable scientific method, if you ask me (which no one did!)

I have read a few studies that seem to suggest that even 1mg or 5 mg can be effective at keeping levels of the drug in the system. So since I want to stay on this drug and not quit in misery and frustration, I take half a dose and hope to stay on for 5 years and maybe even beyond, at an even more reduced dose.

Even on 10 mg a day I had the full round of side effects. Leg cramps, weird dreams, constipation, night sweats, hot flashes, thinning hair and the abrupt end to my periods and joints that seem to ache in bed at night, moving around in bed hurts. There is some information that says it has less to do with the amount of drug you take, but how well your body turns it into a secondary component. If your body does not change it into (forget the name) then the drug has little effect for you anyway, no matter how much you take.

I have devised my own tamoxifen routine. Sunday 20 mg. Monday 10mg. Tuesday 10mg. Wednesday 20mg. Thurs, Fri and Sat 10mg.

I did tell the radiation oncologist that I was only taking half doses of tamoxifen. She said, 'I would prefer that you were taking the full dose'. I said, of course you have to say that, it's what the book says, but can you tell me WHY the book says that? Can you show me where they dialed the drug back until it had no effect, then dialed it back up to where they knew it saved women but also made it tolerable for them to take? And she smiled at me and said nothing and I said, I thought so. And I continue to medicate as I see fit, in a way that will hopefully allow me to stay on this drug for 5 years.

It would be foolish to play loose and fast with 'the rules' if we knew that tamoxifen at 20mg daily would 100% guarantee NO RETURN OF CANCER! But we know that's not true. We know women who have done everything, including the full dose of the drug and even as they take it , the cancer comes back! So. (shrug). I am certain that if my cancer comes roaring back someone will point a finger and say, see, it's because you only took half your tamoxifen. Which of course will be a load of crap since no one knows what triggers a lurking cancer cell to suddenly metastasize, and it is horribly simple minded and dim to attribute it to not following the doctor's rules. Is it fear or good sense that has us taking 20mg? I don't know. So I split it down the middle. 10mg, hope the side effects are tolerable (so far they are, the leg cramps eased off thank god! But the night sweats, I really hate those!) Good luck to all. No easy answers.

Michelle - good post. My plan is to get all the facts about Tamoxifen and how it meshes with my diagnosis. If I think it is beneficial I will take it. My mindset is to not expect SE’s. If I do get them, I will then deal with them. I’m so tired of women who don’t even have breast cancer telling me about “a friend of a friend” having her life wrecked on Tamoxifen. Stop acting like im going to go from 45 to 75 please. This disease is enough you deal with without the theatrics.

Wallan I understand where you're coming from. I'm at the opposite end from you. Caught my cancer so early that my MO says it isn't cancer, just pre-cancer. Which is well and good except that doesn't negate the fact that the SE's from the anastrozole can be miserable. And when I went to my PCP, because I had a cough that lasted 2 months and kept me up half the night , his glib remark after I talked him into giving me a script for tesla pearls was " It isn't like your immune system has been compromised. After all, you didn't have chemo."

Fortunately, I have a nurse navigator with the medical group I use. I told my MO when asked how I was doing at my last appointment that I was having difficulty with the aches and pains . His response was " That's just arthritis." I talked to my NN and she told me to try taking my meds at night instead of in the morning. I did that and the aches did go away. But, after 2 days I was having sleep issues. Then I tried adjusting the time. I started out taking the meds at 8pm and going to bed at 10:30 or 11:00. I moved it up to noon but suddenly found myself falling asleep at 3-4 pm if I was sitting down reading . I've started taking them at 3pm and that has worked out great. No problems with aching and no more sleep issues. I started taking the meds July 1st so that may have a little to do with it but I'm not sure.

My NN also said when I discussed my MO and my take on his manner that if I would like to change MO's she would be happy to find a new one for me. This MO isn't in the same medical group. I got him because I thought I would have to see him more than once every 6 months. She also said if my issues continue there are other meds I could try. Wishing you luck and hoping you can find a new MO who treats you with respect

VL22, I don't know why, when hearing you have breast cancer, people who have never experienced it seem to have an opinion about it. For me, there was nothing big, frightening, or too scary. I had Chi-Sandy, Molly50, Claire_in_Seattle, to help me during different phases of my journey. My girls (we are all girls) kept it real on here and were instrumental at "go time." Chi-Sandy help me through my lumpectomy and rads, Molly50 helped me through hyterectomy/oopherectomy, Claire_in_Seattle helps me get on with the business of living my best life. I have my anchors in the outside world, my husband, children, sisters, niece and friends, and my anchors in the breast cancer world. I have been so fortunate to have a great MO staff, Rads staff, obgyn staff. I hope that you have found your anchors, because it really helps to have them in place. My anchors in breast cancer have helped me so much, that I cannot express enough gratitude.

I am reading these posts and getting a little angered at how we refer to the REAL and ACTUAL effects as 'side effects'. As if they are imaginary, unimportant, easily brushed off and if we were big girls, strong girls, we'd ignore them and soldier on despite how crappy we feel and never utter a word of complaint. We would be good beasts of burden, surging forward under the mental and physical load that is breast cancer. Hooray for us.

Bullshit.

The female body is designed to have access to its female hormones. When you starve the body of those hormones (as tamoxifen does) you have EFFECTS - not side effects. The word 'side' should be removed from the entire conversation, in my opinion. It is demeaning for a medical professional at ask a woman how she is dealing with the 'side' effects of this drug (or any drug). Is a blood clot a side effect? Is risk of uterine or ovarian cancer a mere side effect? What about a vagina that shrivels up and quits working - who even thinks about such a little problem as a sex life that ends and the impact that can have on a marriage? These are not SIDE effects. These are powerful and often painful and destructive consequences of these drugs we take. Tamoxifen is not a cure, it's a bargain, a deal. We say to the Cancer God, I will tolerate and risk the consequences of this pill in order to not die from breast cancer, and you, God of Cancer, will you hold up your end of the bargain and not give me anymore cancer? And he just smiles, but he makes no promises and the risks and misery and effects, those all land on you. He risks nothing. It's all you. And in the end that back stabbing creep can get you again anyway, even though you bargained in good faith and did your part, taking the damn pill, living with the misery and smiling while you did it.

I have a friend who did 5 years of tamox and never batted an eye. Bless her! But me? I have flung myself out of bed in the night hobbling around the house with my thumb dug into my thigh muttering ohmygod, ohmygod, ohmygod as I try not to trip over the dog and vacuum cleaner. And then that damn thigh threatens, for the next 3 days, to repeat that performance at any time, hurting like hell, like I was kicked by a horse. This is all tamoxifen. At last haircut, stylist commented on changes to my hair! No periods. On HALF a pill a day!

I do not encourage anyone not to take tamoxifen. But I do view rigid and unyielding doctors who insist on the full 20mg as uninformed and maintaining their legal protection from lawsuit as opposed to helping their patients find the balance between some protection from returning cancer AND real effects that make life unbearable. I get upset when I hear women who say they quit in misery but their docs never suggested a dialed back dose or any tweaks at all to try and make it more tolerable for them. NOTHING is one size fits all, and that includes tamoxifen. Medical oncologists are not tailors, tweaking drugs to suit each client, but they should be. I do not believe any of them have investigated tamoxifen beyond learning that it is what the book says to prescribe. So they do. Drive thru medicine. NOT good enough! It pushes women into a corner where they make the choice of be miserable or quit altogether. That is the result of being told that the things that bother us are trivial 'side' effects. Like hell they are.

Ah... Carmstr835:

I'm so sorry you are going thru this crap. I hope your oncologist can answer some of your questions. And the cardiologist. At least you are being looked at.

Its ironic, but I too went to a cardiologist this past August for a fast heartrate and for chest pain and feeling dizzy and faint. After lots of tests, echocardiogram, wearing a blood pressure cuff for three days straight, stress test, and blood tests, I was told there is nothing wrong with my heart. I don't know why my heart races sometimes, it still does and I feel tingly and faint. The cardiologist told me its unpleasant, but its not dangerous. He says it sounds like my blood pressure drops sometimes - and this causes the heart to pick up and then this makes me feel faint and tingly. He says I may be dehydrated, or overtired when this happens... he wasn't sure. A friend of mine suggested it may be thyroid related.. I do have low thyroid. She said she read somewhere that taking my thyroid meds at a different time could cause spikes in my thryoid and my heart to race. This may be true -who knows?

I hope they find nothing wrong with your heart or anything else either.

wallan

Wallan: Thyroid replacement stressors can be fairly easily controlled and eliminated as a cause of your symptoms. It is not rocket science. Take it every day, the same time, separated by two hours from things that interfere with absorption ( dairy, calcium, iron, vitamins, metamucil, a few other things) . TSH target in most is 1-2, a little higher (meaning less thyroid) if you are older. Talk to an endocrinologist if your primary or cardiologist cannot straighten it out, then you can worry about the other issues remaining in the differential diagnosis for your symptoms

I would start with contacting whatever "manager" type person they have at the center and asking them about changing MO's. I'm sure this wouldn't be the first time that there has been an issue between a patient and one of the doctors.

I have never seen a medical note like that. The phrase about "bizarre conclusions" is particularly inappropriate. I would make sure to see a practitioner who does not have access to that note, since it will bias any provider against you. In this day and age, finding someone with no access to a certain record is hard, though.

That said your focus on the effects on your brain versus death from cancer, and your willingness to wait for stage 4 to take hormonal meds, is most likely frustrating for any physician.

Everyone has a right to their choices, and respect for them as well, but I would risk just about any side effect as long as it is not life-threatening, to be here for my kids and, hopefully, grand kids. I have been on Femara for more than 3 years now and yes, I have periods of time when there is pain, insomnia, fatigue and some mild memory issues that I may have had before I took it ( just the occasional blank moment for remembering a name). Right now I am in a good phase, fewer side effects, which makes me wonder if it is working still! I already had osteoporosis: I would rather be disabled than dead!

You could look at reducing dose but effects may be similar.

Your research supports not taking the meds but there is also research supporting taking them- a lot of it- so make sure to read all of it, from every point of view.

I sat with a woman having IV treatments at an integrative medicine center, who was fixed on the possibility of biopsies spreading cancer. So she never had a biopsy. But when I was with her, her cancer had already spread significantly! "Spread" from the original location was not an issue. She literally had NO treatment and kept telling me that she was sure her IV treatments had kept her tumors the same size. She found a doc to support what she was doing. If you are unhappy with your doc, maybe an integrative doc would be a good support.