Bottle 'o Tamoxifen

Hapb,

I too was talked into HRT to protect my heart and stopped the day the WHS results were announced. However, I do not blame the doctor who prescribed it as I did look at the available research at the time and HRT for cardiac protection was the practice standard at the time. My BS agrees that it was considered the wise thing to do back then. Too bad we're paying the price for it not being the wise thing to do.

Vamp - Gee, I guess I better have that triage nurse contact my father's heart specialist along with everyones MO who recommends it so she can fill them in on that news. That's crazy! I mean I'm sure it doesn't always work for everyone, but it's a very common recommendation that she's discounting.....and kind of dangerous too if a patient should be on it and decides to discontinue on her word alone.

How are you feeling today?? Better I hope!

HapB...I know this sounds cynical but after experiencing more than one life threatening side effect from prescription drugs FDA approved means nothing to me! I'm actually really lucky I'm still around. We have to be our own advocates and not take these drugs blindly without doing our research. I learned the hard way and if I can educate even one person about it than its worth it. Good luck to all.

Not only does 81mg aspirin help prevent clots that can lead to stroke but it helps prevent colon cancer.

Check out the talk I went to late last year. Link in that post in here.

everyone needs to go over their profile and risk factors with their mo. High risk people like me who can't tolerate the ses of AIs, T is all that's left.

People who are doing well on any anti hormonal are mostly gone from the boards. So there is this tilt. All meds have possible ses. Many same or worse than this. You need to carefully evaluate your situation. Stage 1 folks can make the no thanks decision easier than stage 3, so take that into account. Know your personal risk for mets and the common ses with any med you are looking at. Maybe some day there will be a better med. At least we have this choice. Other cancers don't.

T can decrease risk up to 50%. Of course no guarantee it will even work as with all meds, we are all different. That's why there are different meds for the same thing. Add weight control, exercise, diet and you up your chances not to recur or mets.

What confuses me about Tamoxifen is when do people tend to have side effects? Can you not develope them until months or even years after starting? Can some go away and new ones appear?

Also, it's hard for me to know if something is a tamoxifen SE or something else. For example, I've always had seasonal allergies, but this year I have pain/tingling in ear and jaw and cheek area. I've assumed it's alkergies, but them I google a and find others attributing the same thing to tamoxifen.

It's annoying and tiring.😳.

Rosabella- I hear you on the pill popping thing. I rarely take anything if I can avoid it. It’s like I’ve grown an aversion to pills after going thru it all. I also find the simplest medical appointments a grind....walking in the building makes me feel yucky (can we spell PSTD?) I attend all appointments, take my meds & vitamin d like a good girl but somewhere in my mind I get a feeling that I’ve done my time and should be free of having to continue face meds & appointments.I guess in a perfect world I’d get that.

Lula, isn't that an intense and anxiety provoking trigger; the smell. It's the SMELL of a hospital that gets under my skin. Or 4 people jammed in a room with nothing but curtains to separate and contain. Privacy and space are supremely important to me and when I am at my worst, sick in a hospital, the LAST thing I want is to be warehoused with 3 other people who are also at their worst, with no nurse in sight unless one of us pounds on that buzzer for 20 minutes. Yup .... the smell of a hospital makes me gag. Those limp, drab coloured woven blankets that are too small and too flimsy to be any use. AAGGGHGHG!

Docotrs know shockingly little about the drugs they prescribe. I always talk to my pharmacist if I want the Who's Who about drugs.

Lula and Rosabella - thanks so much for the information!

How does an individual know what their "personal risks for mets" is? Is it the genetic testing I turned down? At the time, it sounded like a $4000 scam that maybe my insurance would cover, maybe not. Since the only people in my family known to have gotten any type of cancer were distant AND elderly, I turned it down. My MO considered it irresponsible since I have a daughter, but my thinking was that if anyone were to have genetic testing done, it should be her - I already KNOW I am high risk - ha! - Monday Morning Quarterback.

So am I missing something regarding the calculation of one's personal risk for mets? Is it a lifestyle/diet and cancer stage/node involvement or is it genetic testing?

Lulu & Runor - OH. THE. SMELL. Once I step off the elevator I can smell the chemo chemicals, and the strange 'human' smell reacting to it. I had always wanted to volunteer in the chemo area as a helper....a way of giving back. I can't yet. the smell makes my nerves jangle and I'm left feeling right back at ground zero. I feel emotionally choked up and cannot wait to get my appointment over and get out. It's not the people or their sad stories that keeps me away, it's THE SMELL.

The sounds - Intercom announcements in that soft voice that you have to strain to hear, the phone buzzing, the sound of gurneys hitting the doors, the whirring sound of computers and imaging equipment....all again put me in a bad place. It all makes sense. The memory area of the brain is hardwired to the sight, smell and hearing portion of the brain. PSTD...oh yeah, I don't have a doubt.

Runor - Couldn't agree with you more on the SE points. I don't suffer much anymore because of my exercise regime, but I know for a fact that when I break from it, it all comes creeping back. I estimate my SEs at a hard medium without my program....and they were miserable and affected my QOA in a big way. I don't post about them because for now they're pretty much gone....but oh boy, yes they exist! I'm with you, I highly doubt we are a minority.

rumor-so true on both posts. I hate to say it, but everyone complains about drug reps and how they push the cost of drugs up, and they get the dr to write more expensive drugs instead of the cheaper generics. The reality is, todays Medicine is all about productivity and profitability first and healthcare second. How many patients they saw and how many ICD-10 codes they can charge for. In the US there has been a huge “takeover” of independent medical practices by big institutions. And it’s all about negotiating power over reimbursement. The bigger the group the higher the reimbursement for the exact same services. Many independent docs were ok with this while acknowledging it wasn’t fair but they got to keep their independence and didn’t have to deal with institution bureaucracy. Then Medicare issued a mandate: switch over to electronic medical records for filing claims or be penalized 50% of the reimbursement. Electronic medical record software alone is $$$$$ not to mention the equipment to go with it. Many practices agreed to join the larger institutions at that points of they didn’t bear the brunt of the EMR outlay. They were almost always promised that nothing would change in their practice except for addition of EMR, billing Office and who signs the paychecks. Biggest lie ever. The docs are being monitored everyday and if someone in the institution ivory tower decides the doc isnt seeing enough patients or he’s not billing enough codes/levels pressure to do so is put on that dr. That pressure negatively impacts care.

The big institutions aren’t typically friendly to drug reps - they interfere With productivity. With the increased productivity demand the dr doesn't have a lot of time to find out about newer therapies, side effects/effects of medications. For many docs meeting with a drug rep to get the skinny on a new product or a new Indictation or how to even use/dose the medication and get it covered is/was a valuable time of learning and staying on top of things. Why don't docs know how a med works and the side effects? Because they 1) don't have much time anymore as a corporate suit is riding them to see more patients. 2) the quick source of information they had thru a drug rep is blocked. That leaves google...and they're upset when we come in knowing more than them (from using google), the supposed expert. Advertising meds like Ibrance, Keytruda, Neulasta, etc on tv to consumers is the default to helping keep docs aware of these medications. If a patient asks, the doc is going to have to go look it up and at least get some basic information on it. While everyone likes to complain about newer meds and they cost more than a generic that does the same thing...what they often don't realize is the newer one often is safer, more convenient, or has more tolerable/fewer side effects. We see it all the time in this board right here...brand name tamoxifen and Teva brand seem to have fewer side effects. In the diabetes world metformin is first line treatment. Generic versions cost $4-10for 30 days supply. Brand name is about $35 for a months supply. Generic is known for horrible tummy upset, acid reflux, nausea, frequentgas, gas that smells worse than normal, and lots of diarrhea. The brand name not so much. Is an extra $25-31 a month worth not having diarrhea every single day? (In case you didn’t know, the answer is yes). But again, most docs don't know that and insist it's not any different because they don't know any better. A drug rep could've told them that and showed them the studies to back it up. Next time you see a drug rep in a dr office, see them as a helper not an evil entity and thank them for keeping your doc up to date so you can get the best care possible.

Bottom line you've got to be your best advocate. Don't be afraid to hold your ground and bring up the knowledge you know from personal experience and what you read from credible sources like BCO, tv/print ads. Docs of today are NOT all knowing and when they don't know something they tend to brush it off unless it's life threatening. If we don't hold them accountable in staying up to date with info anyone can pull from online, who will?

It is true that people who are experiencing side effects/effects tend to be more vocal about it than those who aren't. BUT there are thousands who just take their meds as prescribed and live with the SEs because they feel they have to just suck it up, thousands who only vent with their friends about it or in live support group sessions because they don't know BCO and sites like it exist (I'm pretty internet savvy and didn't realize these forums existed until months after diagnosis and after bmx w/DIEP flap was complete). Yes there are thousands getting along just fine with few to no significant side effects, but there are thousands more we don't hear from that are absolutely miserable from taking the anti-hormonals.

Ok I'm off my soap box. 🙂

I have a question for anyone who has advice on this....I am 5 years out from breast cancer, I was taking tamoxifen and the side affects weren't too terrible, and I finally decided to have a hysterectomy, and my oncologist said I don't need to take tamoxifen anymore, and my OB/GYN said it was up to me. I have been experiencing more side affects from the tamoxifen, namely dizziness and I would like to stop taking it, but I am fearful. It was like when I stopped chemo, I was thrilled to be done, but fearful because to me it provided a sense of security, and I am sure that is what is happening now. Can anyone share any experirences or thoughts on this? I would greatly appreciate it.

HapB, my oncologist told me the incidence was similar to the birth control pill. Someone more knowledgeable needs to take this one.

Will say I have damage to my heart from chemo, so the combo of that and T worked against me.

like i said, each individual needs to do what they feels right for them considering their risks to progress. No one is saying DO IT!! Ses are possible with any drug. That's a fact. When checking on drug ses, any drug, look for common ses. Some sites break it down to common v not common. Decide for yourself. Read the good bad and ugly for ANY med you take. T and AIs are a choice and who knows if it'll work for you, but not all drugs are a choice if. Many are truly life saving. I hate drug companies too with their over pricing rip off money making schemes but it is what it is until maybe some day something can be done about it. But unfortunately we live in a money grubbing society here but I keep the hope for future generations.