Best Of
Re: Refusing AI Treatment
@mary9999 - It’s completely understandable to feel confused, as these reports can be really overwhelming to read. Grade and stage are often mixed up, but they mean different things. Here are two articles from our main site that may help clear things up:
Hope this helps. We're all here for you!
The Mods
Re: Any positive or "OK" experiences from Tamoxifen?
Cyborg, It made me sad to hear someone ask if anyone has ok or positive experiences on Tamoxifen. I think these boards do a disservice to women when it comes to hormonal therapy and seeing your thread start really points it out. A large number of women come here when they're diagnosed, post a lot during chemo, some during radiation, and those with trouble on hormonal therapy stay around, and a large number go on about their lives and do well on Tamoxifen or an AI and we never here from them again. Or, they only pop in sometimes to say hi, and the issue of how they're doing on hormonal therapy never comes up. The end result is the bad stories about hormonal therapy end up dominating the threads and it is a shame. Yes, some people have SE's they can't get past and stop treatment. Statistically over 70% never stop treatment--they usually don't post here. So, as you're reading through and getting scared (I know I was) please remember that. Some of these threads scared me to death about starting Tamox. I did have a rough time the first couple of months, got tolerable the next few months, easier the next 6 months, and by 14-18 months I was doing fine. I have to take the pill bottle out and put it next to the coffee pot every morning, and I don't put it away until I take it or I'd forget I'm on it. 2.5 yrs into taking it and my only worry is remembering to take it. (Except for the two times my Onc told me to stop it for surgery etc I can honestly say I have not missed a single day of taking it). My unscientific observation is that going on and off and back on is hard and taking it every day is the best way to even out the side effects. I know it sounds daunting to hear of months of getting through the initial SE's, but, you know what I get in return? YEARS of benefit. I feel lucky to have a drug that works so well for so many women that gives me peace of mind for 5 years of taking it. Plus, studies show the benefit lasts for several years after I'm done with 5 years of taking it. I'm young, I have a lot of years to worry about recurrence, progression, a new cancer, the ability to take a pill every morning that makes my chances better I'll take it.
My hot flashes were really bad at first--gabapentin/neurontin helped. The mood swings I had to learn to recognize when they were coming on and try to stay away from people. The insomnia I broke down and got some meds to help with. The weight gain was and is a struggle. That I'm ticked about. I asked my Onc why I wasn't better prepared and the answer was they didn't want it to be a self fulfilling prophecy. Screw that, I'd rather have been warned. Don't let anyone quote you the original articles about how weight gain on Tamox wasn't higher than placebo. Many articles since then have shown it to be a real problem, and a recent ASCO presentation showed that premenopausal women going on it gained the most weight--thank you very little! So, that I'd warn you about. No way around it, it makes you menopausal and for menopausal women carbs go right to the middle. My best advice for that is to be more prepared than I was and only eat controlled portions of carbs and make them all complex carbs.If you can afford it get a trainer and get some guidance. BC treatment changes our bodies and I had to learn a whole new way of exercising for the new "older" me. Vaginal dryness is another whole topic.
So, yes, many many more than you'll hear from here do fine or even great on these meds, and they do work. Good luck. Please reach out and get advice when you need it---but hopefully from someone who will encourage you to get past the first few months and stick with it
Re: So...whats for dinner?
My son has basketball practice tonight, and my husband is on a business trip so dinner was English Muffin Pizzas. Always a hit w/ my kids. They like to help me make them ![]()
Sherrill
Re: Can we have a forum for "older" people with bc?
Carole, when I first started wearing my FitBit, it caused me so much stress over lack of sleep I almost tossed it. I had thought I was getting 7+ hours of sleep. Well I was in bed that long but my sleep was always 5.5-6+ hrs, never 7. It is what it is, I’ve kept it and even replaced it when it died. Every now and then I get over 7 hrs and it shocks me. 🤷♀️
Wren, wishing you an easy time with your chemo, in case I forget on Wednesday.
We did go to The Big E and had a great time. Weather was beautiful! We’re usually running with kids thru foods and on to rides, or vise versa. But with just us two, we went into the area with crafts and artists. Glass blowers, wood working, just a lot of fun. I bought myself a glass snowflake, and some fall potpourri - orange spice. And we ate dinner at the historic tavern - oysters for him, shrimp for me. I’d say no fair foods, but I did totally devour one of the fairs famous eclairs! Per FitBit I did walk 3.58 miles.
I need to floss, brush, rinse with warm salt water, and then rinse with the prescription mouth rinse. It’s a whole production!
Hope you all have a good weekend.
Re: Can we have a forum for "older" people with bc?
That Big E looks like great fun, Cindy!
Good luck on your chemo, Wren—we'll be in your pocket.
Harley, we had to cancel our NYC trip because it'd be the same weekend our HK leaves (on Bob's birthday). Our next trip will be to NOLA in Jan. (my birthday weekend) for Folk Alliance. At this stage I'm not sure how much professional networking I'm up for—we used to try to maximize the number of private showcases we played, which can be exhausting, since they begin after the official ones end, after 10:30pm. The thought of performing to a few people in someone's hotel room at 2am no longer appeals. I'm going to limit myself to no more than 2 showcases per night, manybe 4 or 5 total. (In years past, I've done aa many as 14 in a weekend). I'll probably be going more for the socislizing and the entertainment. When I was in my 50s, the goal was to advance my late-bloomer career and seek validation. Now, it's just to have fun. Nothing to prove—and certainly not going to tour! Of course, there's also the food (albeit in smaller portions). The conference hotel is next to the casino, which makes Bob happy.
After that, the CBA's continuing education trip will be to Athens & Santorini in March. We've never been to Greece, so I'm hoping Bob will want to come with.
Went to Ashley on Friday and bought a modern china cabinet (same height as the old piano, about half the width, three shelves with glass doors, and two drawers below). We have quite a bit of wall space, so also bought a wine cabinet (4'high, 3' wide) with built-in stemware hangers, a 12-bottle wine cubby, and shelves tall enough to store decanters. Both made of rubberwood, same color as our floors. I took pictures of the glassware & crystal covering the breakfront and the miscellany on the dining room table and sent them to our HK, who said she will put everything where it belongs. At this point, the place is semi-livable but for the hazards of cats and glassware (and the constant parade of boxes being opened and in various stages of "open"—the latter is feline paradise). We found the switch for the 1st floor bathroom fan—it's on the single GFCI switchplate—but the fan only hums instead of blowing. Sigh. One more expensive repair.
We went through our inexpensive mugs, wineglasses & pilsners and wrapped them up for donation along with pressed-glass faux-crystal clocks we never used (a lot of stuff from Things Remembered and hospital-board souvenirs/promos). Going through duplicate kitchen utensils. Will donate my cheaper pots & pans, especially nonstick & aluminum. Have yet to locate my Instant Pot and the rest of the everyday white Corelle and good silver. Lots of artwork & stained glass to hang—but the hooks for the latter were removed by the contractor,. At our last apartment, which lacked cabinets & counters in the kitchen (it did have a pantry), we bought a tall white metal cabinet to store dishes and small appliances (and used a dinette table as a counter). We have a bar cart in the kitchen with a white tile top. We will move that into the dining room and put the metal cabinet in its stead. The contractor didn't include a slide-out for waste disposal. and the kitchen dinette set is big enough to block easy access to the step-on waste can we used to keep in a corner. There will be a lot of rearranging to do. Almost considering consulting a decorator (though our HK moonlights as one back in B'ham). I know where everything used to hang, but it was done gradually over the decades. All at once seems daunting.
We will likely be moved in with the cats before the last week of October, and take that time to get everything out of Lincolnwood and get the latter clean enough for the next tenant. We may have to go into part of November—and will be leaving a lot of stuff we bought to make the place more like a home than a vacation rental (e.g., plastic wineglasses, George Foreman grill, toaster-oven—all the Wal-Mart-grade things that weren't supplied by the owner). Dawned on me that there are no bookshelves or bookcases here, nor any A/V components other than the TVs.
Betrayal, glad the Lidoderm patches are working. Amazing how much that extra 1% can do! I used to alternate them with Flector (diclofenac) patches so neither one was on for more than 12 hrs. These days I make do with lidocaine roll-on, Bio-Freez, and generic Voltaren gel. Might see if any of the numerous dispensaries around here carry Mary's Medicinals: they make a CBD transdermal pen with a bit more THC than the over-the-counter drugstore stuff, and when I had a medical cannabis card it used to work well to pick up the slack that the other OTC topicals couldn't suffice. Hope you're feeling better in time for next week's cruise!
Re: Can we have a forum for "older" people with bc?
The Big E photos
Clydesdales were there!



