Has anyone not gone thru radiation and hormone blockers?

Posted by amjokisch @amjokisch, May 2 6:45pm

I was diagnosed with stage 2 e pos her2 neg. localized in the milk duct. 1 node taken that came back negative. I had surgery a week ago and am considering not doing radiation or hormone blockers.

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I had 5 radiation treatments with no side effects. I was advised to take 20 mg of Tamoxifen every day but have not done so yet, because of some other health issues I want to get over. However, I have done research and have decided if I do take Tamoxifen, it will be only 10mg per day. They only do 5 mg in Italy. The lower dose has less side effects. The benefits of 10mg are the same, but US doctors won't tell you that because it is not protocol. One size fits all - but we aren't one size fits all!

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@kaki49

I finished radiation in May and request my heart and lungs have the best protection, so they did my radiation in the prone position. If your facility can’t do it that way, request they send you to a place that can.

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Can you give more info on this prone position for radiation and protecting your lungs and heart? I have already had a consultation with radiation oncologist and nothing like this was ever mentioned? Why would you have to ask for a prone position versus protecting your heart and lungs being their main priority?

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@maryk206

Hi there - I'm in my ninth month of taking Verzenio at 150mg. My liver enzymes shot up after the first few weeks so I took a break of a couple of weeks. Since then my blood labs have been fine. I'm more tired than I used to be (not the true fatigue that I had during radiation, but I definitely like my bedtime). I'm not sure if that's the Verzenio or the Anastrozole I'm taking. The "shitty" side effect (pun intended) is the diarrhea. The diarrhea itself is managable with loperamide (Imodium) when it comes on. But it's the urgency that has been a challenge. I don't really notice it too much when I work from home three days per week because when you've gotta go, you just go. In the office is a little more noticeable, but it's still quick, easy access to a bathroom. But I've had more than one experience of having to leave both in in-person or Zoom work meeting because I suddenly had to use the bathroom. But the worst is being out and about. I'm always on the lookout to know where the next bathroom is, just in case. I 've had a couple of times when driving somewhere and I've come sooooo super close to losing it right there in the car. Like REALLY close. Having said this, I usually don't have diarrhea two days in a row (I probably average 3 days per week). So on the 2nd day (after taking Imodium the day prior) I'm usually okay and don't worry about it. If it gets to be the 3rd or 4th day, I know to be cautious and maybe even take Imodium pre-emptively. BUT - with all this Imodium-taking, it's super duper important to pay attention to constipation, as well. I had one particularly terrible bout of constipation that almost sent me to the dr. so I've got sort of a routine with balancing my diarrhea, Imodium, and Miralax. I'm been trying to gut it out at 150mg - but with all if this diarrhea, my oncologist and I are experimenting and I'm going to try one-day per week of skipping a dose and see how that impacts the subsequent days. But overall, I'd say it hasn't been super terrible. It certainly stinks, but it hasn't been the worst thing to deal with (although I might have it a little easier than most as I work from home 3 days per week and have a very understanding boss and co-workers - which really helps). I just keep counting the months until I'm done. It doesn't rule my life, but certainly impacts it. But overall, I actually feel better since my diagnosis - quit drinking, started eating better and exercising. The diarrhea impacts my life but doesn't ruin my life. And since I know it's only for the next 15 months, I figure I can deal with it. My advice: just plan ahead when increasing the dose. Keep Imodium in your purse. Tell your friend or spouse that when they are driving and you say you need to pull over to use the bathroom, it means NOW. Keep reading bulletin boards to hear how others are dealing with the diarrhea and see if any of their tricks (taking the dose at a particular time of day; taking Imodium preventively; eating certain foods) works for you (I haven't found my magic bullet yet, but if I do - I will certainly post about it). Hang in there. You can do it!

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I don’t feel comfortable leaving the house until I have
had a bowel movement as I have had a couple of
accidents. So now whenever I go out I am wearing a
Depends or some such and have never needed it. But
I feel secure.

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@kaki49

Do you have any side effects? I just had my first infusion and on day 4, I had exhaustion and bad bone pain. I’m wondering how long it lasts and is this usually only on the first infusion.

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Yes, the first time I had the infusion I felt like I had the flu for a week after. The second time it was similar but less time and then after that it was just mostly bone pain. Especially in my back, arms and legs. I was told eventually by a PA at the oncologist office that you can take a 24 hour antihistamine (Zyrtec, Claritin) to help with the symptoms. You take 1, 24 hours before, then again on the day of and for 2 days after. It has helped me have less bone pain from the infusions.

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@amjokisch

Mine was ductal. I had 3 symphonies removed that were negative. The tumor was tested and was a 17, which they said was very low, about a 2% recurrence rate. I did a lot of research and learned 1. Get your immune system up. 2. Exercise. 3. Eat clean; as close as you can get from farm to table. A lot of berries and leafy greens. I'm not getting radiation or taking hormone blockers. I don't think the benefits out weigh the side effects.

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Hi!
You mentioned your score is 17
- referring to onco score correct?
May I ask the size and grade of your tumor?

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