Best Of
Re: Bottle o Tamoxifen
Ahh Runor, sorry to hear about this new go around of stress and really hoping it turns out to be nothing for you. Hang in there and don't beat yourself up about your feelings!!
Arlva, I've always been a bad sleeper. Lately I've found that a combination of high dose melatonin (20mg) and low dose ativan (5mg) helps me get enough sleep and stay asleep.
In terms of antidepressants, I went back on wellbutrin after I switched from tamoxifen to toremifene. For anyone else struggle with tamoxifen, I'll just say it was a really really good switch for me. It took some discussions with my doc but as far as I'm concerned the clinical evidence for toremifene for premenopausal women is just as strong as for the OS/AIs, even if there is less American anecdotal evidence.
I definitely gained weight while on tamoxifen, but I was also dealing with other major stressors so it's hard to tease apart since I'm a stress eater. I've been doing the keto diet à la Reddit (which emphasizes protein rather than fat) for about six months and I'm back down to a size I had kind of given up on ever seeing again! It turns out that lock down is a great time to not be tempted by outside food...
Anyway thinking of all my sisters here and wishing you good things!!
Re: Bottle o Tamoxifen
runor - first of all thank you (and DNG77) for the support and camaraderie re: the weight gain! I guess clearly it happens with tamoxifen and now the question is whether I stay on it at this heavier weight or try and go off it and get myself into better shape. I also get winded easily BUT I can swim for an hour so its weird.
And here with you and others hoping for the best once you know more on the recent bleeding... my periods were irregular for my first 6 months on tamoxifen, I think its entirely possible this is just an irregular period. I agree with others that the attending doctor should not have assumed you were post-menopausal since tamoxifen does stop periods for lots of people, and I've read many posts about how that all comes back once they stop. Also uterine thickening is a known side effect of tamoxifen, so that's probably all that is. Doctors always go to the most cautious worst case scenario, I guess they have to be cautious.
If it helps, found a couple articles...
https://www.cancernetwork.com/view/benign-and-hype...
This one (linked above) basically says changes to the lining of the uterus are common with tamoxifen and very rarely actually cancer. "A number of investigators have documented an association between tamoxifes and benign endometrial changes such as polyps and hyperplasia (Table1).[1-6] These conditions have been attributed to the estrogenic activity of tamoxifen. A review by Assikis et al[7] estimated that tamoxifen patientshad a threefold increase in endometrial proliferation and polyps and a tenfold increase in endometrial hyperplasia compared with controls. Although the incidence of these endometrial changes is high, the chance of these conditions progressing to endometrial cancer is low; "
https://pubmed.ncbi.nlm.nih.gov/9057510/
This article (linked above) says this - which puts you well within the normal range: "Endometrial thickness was measured in anteroposterior dimension and was considered normal when less than 8 mm."
I hope that helps! Please keep us posted.
pebblesv
Re: My Husband, My Life, My Love, My Family, My Cancer
My rose of Sharon bush.. hummingbirds like it.
Miss Cat Tiger is comfortable.
@shanagirl sorry about your summer from hell ugh.
I'm just cruising on in a kayak full of time bombs with a goserelin shot today. Speaking of kayaks, I did get to go on a little paddling trip. Highlight of the month.
mkestrel
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy-678 Thank you for contacting Micmel. I have been quite concerned about her and Gabby.
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy-678 Thanks for updating us on Mel and Gabby. I think about them every time I’m on here. Can’t even imagine her level of worry. May God give them the strength to get through.
cookie54
Re: Does anyone refuse hormone therapy altogether?
That's our point: the debilitating side effects. I don't hear anyone refusing because it is against their religion. When the side effects are so bad that that you question the point of living,then refusing AI's can be a positive choice. A shorter life (maybe) but a much happier one.
Sara536
Re: Starting Chemo August 2025 support thread
@dianeb74 I got a wig (my first time, 14 years ago) but never wore it. It was free from an organization that is no longer providing services. I've been doing headscarves - there are so many options on Amazon now. As for where to find a wig, I believe the American Cancer Society and an org called Wigs&Wishes offer this, plus there might be local resources in your area. If you search this forum for "wig" you might get other ideas.
My onc team said the same about the cooling caps, especially on AC.
It helps to have a plan, hair starts to shed anywhere between 2.5-3 weeks from first chemo. But it doesn't all fall out at once! Your hairdresser might have some helpful suggestions too.
kks_11
Re: Abemaciclib Verzenio for Stage IV
@kathrynw1thasea I agree the doctors don't always know. They are knowledgeable but we are all different and I feel like sometimes we are all guinea pigs being tested for what works on us. I have been on Verzenio and Letrozole for about 16 months. I have adjusted to both with ongoing but tolerable side effects. The bladder issue I was talking about a week or so back is a maybe infection of some kind. But the day I went to see my oncologist last week showed a sharp increase in my tumor marker CA15-3. So I had some additional blood tests done and next week I have a MRI of abdomen/pelvis. I even forgot to ask about the Letrozole being the bladder issue culprit. I was thrown by the double increase in tumor marker .
I bet your grandmother was on an early version of Verzenio. That jaw disease osteonecrosis freaks me out too. I have a dentist appointment next week. A second opinion because my previous dentist wants to yank a tooth. I have told them I do not need any unnecessary dental work because of the Zometa. They do not listen; don't care - just want to make money I believe. So freaking frustrating. My oncologist has told me to sideline the dental issue for now because we have enough to deal with - with the bladder and now the high rise in tumor markers.
@scurred2020 I'm sorry to hear about your friend. It's very hard to keep it all straight but we have to be our own, or our friend's own advocates. It sounds crazy to not get additional testing or imaging. Not even a CT scan or body scan or MRI versus PET scan? I hope that she is find answers at this point.
@lucysgirl I'm really happy for you to hear no progression.
Does anyone wonder why any of us had a long NED after initial breast cancer diagnosis and then MBC dx? I have read that is rather low percentage after being NED for more than 5 years. I was 11 years between. I'm just wondering if there is any common denominator.
Hope you are all doing well.
Re: Abemaciclib Verzenio for Stage IV
@scurred2020 , so sorry for your friend. It’s so heartbreaking when you watch a fiend whose battle has gotten tougher. I wouldn’t say she failed Verzenio. I’d say Verzenio failed her.
I was on Verzenio 150 with Letrozole (Femra) and the diarrhea was just awful every day. I was so miserable that I took a drug vacation for a week when I had a big three day business trip. I talked to my doctor who told me that studies were showing that people on the lower dose were getting better results and they think it’s partially because of the tendency of people to need the drug vacations. If you take your meds sporadically some of the little buggers get to survive.
I would say that the MO making her wait that long with that much pain was just plain wrong. Insurance may not have paid for the imaging at the same level as it did at 4 months, but some cancer grows fast and 4 month can be an eternity if you are in pain and emotional limbo. If it were me, I’d want to try more carboplatin. It was obviously doing something incredible the first time around. Maybe she needed the 6 cycle treatment rather than only 4.
