Does anyone know why I was doing a search on breast cancer that spreads to the liver (I had a CT scan yesterday, it should be on my patient portal tonight and I have an appt. tomorrow with my onco) and my own post on July 27, 2022 came up?
Isn't this a private board? Do I need to change something in settings? I do not understand why my post came up during a google search. Not comfortable with this? Any advice or tips why this would happen.
Someone very close to us all and a great help left the board for this reason. She found a couple of her posts on a site she had nothing to do with. 😡🤬
I am sorry that you all did not share that information before! Was that the situation where everyone was blaming everyone else? It is all so sad. We have a devastating disease--and all the Internet and its supposed "support sites" can do is think about advertising. The best to everyone.
No not at all.
What would be the point if I asked a question on this board and someone putting it on google? This is not good. I thought I had joined and it was private community. Is that not so?
The only way I found this site Was by searching for info and something came up on this site so I joined. Realis, nothing one ever puts on line is truly private.
What? Okay. Maybe I'll have to say goodbye.... But I did a search... I actually put in google "timtam56 metastatic breast cancer" and I didn't get directed here.
But a question I asked on this section of this board about breast cancer spreading to the liver coming up when I do a general google search. Well, most sites I was under the impression, it is private to the members which is why one has to log in with a password. Great.
So scary!
I went under settings and advertising, etc. was checked so I unchecked all but like functional. I think many do not realize you can change the settings. I thought it was private that you had to register and all that. But I unchecked advertising on my settings so that may be something you may wish to do.
Yes it is scary a bit. But I guess in this social media age, nothing is private anymore.
Thank you for this information!!! I did not realize this was an option in settings.. I will change mine immediately.
You need to go into your account settings. You have options, from memory, of how private your posts will be. This is in fact how I discovered this site. IE Googling something and up came up something interesting, which turned out to be a post in this group. I have mine set (I think anyway!) so that my posts would not appear outside of this site but still refrain from giving all my personal info in posts because frankly everything is shareable one way or another, unfortunately.
It is not private. If it where you would not have found it. It has to be public but only when it is relevant. So don't worry. your remarks are not entirely public.
Cheers, June S.
Well I can search for stage iv breast cancer forum boards and many will come up and you see the how they have the subjects divided. But to post or respond, you have register with a username and password. I do not get any ads.
The internet is really kinda creepy when we think about this!
My Android tells me this site is not secure as I attempt to log in...I usually do anyway as I am not worried about who sees my info
Hope you get good results from scan!
Unfortunately, I did not. I had the scan on Tuesday, by Wednesday at 1 pm, it was on my patient portal (though I expected from the bloodwork and my onco also that it was not working).
Sure enough I was on tamoxifen and afinitor for two months, but my cancer tumors have grown and new ones forming so that was that.
I'm sorry to hear your news, but I'm sure your onc will have a plan! Let us know.
I am waiting for the generic version of Xeloda to arrive from the speciality pharmacy. She told me I will be taking 8 pills a day (twice a day with 4 pills). She said it would be week on the meds and then a week off.
It was the side effects that she told me about that were scary. Fatigue (expected), possible jaundice (yellowing eyes, NOPE), my nails my turn black (WHAT), severe diarrhea (I will just use the oxys) and that if this does not work, I will have about 4-6 months but would need to subtract the time that the last treatment plan (2 months) did not work.
She basically replied that this is kind of my last option and if it does not work, then I have a limited amount of time left although my liver is functioning well.
But I did watch a video of a cancer surgeon from John Hopkins say that he has seen women that their whole liver was filled with cancer and yet it functioned properly so that in the end, they pass from something called Swamp Gas.
It is just that I cannot have hospice at home (I live in a rented apt. in a coop building) and will have nobody to be here once the nurse leaves so I will have to go into hospice even though i do not want to do.
She was kind enough to let me know that if I stayed home and this treatment does not work, that I may feel more and more fatigued until I go into a coma. (SARCASM about her being nice.)
It is important for me to have some kind of timeline bc I do not have the luxury of being able to be home and have hospice come. I am so so dreading this. Thank you for your reply though.
You spelled the worst scenario on Xeloda. I am on it. it’s fine. Truly. Started after liver progression.
Not too much fatigue. Nails are kinda ugly and I’m too self conscious to go to the nail salon or wear sandals, but that’s a first world problem.
The good news is I feel great and it’s been working well. For how long? Who knows. But today is a good day.
I’m on a Facebook group for Xeloda with women who’ve been on it for years. Several are NED.
To the point that I think we’re all started on CDK 4/6 meds because of the”new” factor but Xeloda is just as good.
Honestly, and hope you don’t mind if I’m blunt, you need a new doctor.
Now.
Yours sounds like Debbie Downer. Mindset is so important. I do believe it impacts outcome. Not in a toxic positivity at all costs way, but being mindful of creating a tranquil environment as much as possible in our messed up world. This impacts our immune system, and if nothing else makes things feel less yucky. Perception as they say, is reality.
Cancer is shitty enough without an unsupportive doc. It’s a pain to find a new one, and I know insurance is a thing, but I don’t believe in all of NYC she is the only oncologist you can work with. (Said with love)
My first oncologist is one of the top researchers in the country. She’s on every panel, headlines every conference. But you know what? I cried every time I left her office. She was abrupt, didn’t listen, texted during appointments and said scary things as off the cuff comments. I would likely be dead from stress by now if I hadn’t fired her.
I was scared to do it—after all she is “the best” And some women love her. But she was wrong for me. I figured when she finds the cure in her research, it will be on the news so I don’t have to be her patient to find out about it.
My new doctor is not famous, and probably doesn’t have her knowledge, but he is good enough. And he is kind and listens and is positive. I don’t dread appointments. So I am calmer and in a better frame of mind to ask questions.
It really doesn’t sound like you’re out of options yet. So if you’re going to stick around, why not make the medical part a bit more pleasant for yourself?
Even if you don’t stick around—and none of us knows how much time we have, why not be around those who cheer you on in the meantime?
P (real initial but still incognito 🥸 😅)
I do not wear open toe shoes ever even before cancer. Plus, from the tamoxifen and afinitor that I was only one for two months made my feet swell up so much they look awful. I mean it seemed to happen overnight. Now that I have a break in between when the Xeloda arrives, I am enjoying a week without any heavy duty meds.
I would just do my own nails. I have always taken care of my own feet and hand nails. I think I went twice in my life to have them done in a salon.
Personally, (LOL) I think all feet are ugly. I was kidding with a friend when I used to work and took the NYC subway home, that some people have the most gross feet and they do not take care of them and wear open shoes. I guess it is like a car accident, you know you should not look but curiosity makes you. LOL
I can deal with that. I guess they tell you the worst of the side effects but they do not relate to everybody. I was only on afinitor for two months (did not work, cancer in liver progressed) but I never got the mouth sores that others got. I probably was not on it long enough.
May I ask, if you do not mind, how it is prescribed for you. She told me I will be taking 8 pills a day, broken down into twice a day, so 4 pills in am and 4 pills in pm.
She said I would be a week on the meds and then a week off. How was it prescribed for you bc she mentioned that some women do three weeks on and one week off but that she found the one week on and one week off better.
Just curious and thank you for your reply. It lifted me up a bit. I appreciate your replying.
I am on 2 pills in am. 2pm. 14 days on 7 off.
It’s a low dosage. I asked for it to be increased as I want to zap the cancer with a canon, but my doctor said my feet were too ugly to do that (he was kidding. Sort of)
I do know some women are on 7/7 but usually after they are on 14/7 with bad side effects. I think both schedules are effective.
Maybe they are starting at higher dose to see how you do. I think several women on the FB board are on similar to what you’re will be.
Moisturizer will be your friend! That’s the other thing.
Anyway, glad my reply lifted your spirits. I worried I was too bossy. Had just been telling my adult son how to live his life (unsolicited. He’s actually doing fine) so was on a bit of a roll.
What specific site was your old post on?
I have learned our private messages are not private to HealthUnlocked. I mentioned something only in a pm, and HealthUnlocked suggested three other "communities" I might join on that topic.
It was not a site. I was just googling and several things came up and I started to realize hey, that is me that posted that question on this site. So it just came up during a google search. I thought once one was a member and registered that it was private to this site.
I went into settings on this site and unchecked several things that were checked.
Ugh. This is why I don’t disclose my real name here. I trust all of the women on the board but as I have told so few people I wouldn’t want my name getting out. I’m probably very much overthinking this but it is a bit creepy
On the other hand I think I also found this board through a Google search.
I guess we just have to be careful what we say but I suppose that’s true everywhere
Yep that is how I found this site. I was searching for MBC info and someone’s prior post from Healthunlocked/Share popped up. Agree never post your name or other identifying information such as location. While the majority of people who post here are caring individuals seeking information and support, I have also suspected there is the possibility of trolls or people with not the best intentions on this board. It’s the internet. Whatever is in the world will find it’s way here.
I was never going to use my real name -- except for two people I met through this site, and we texted our real names. I accidentally chose as my username someone else's real name! Poor woman. I am not Tammy Cross, and she is not on this site.
LOL. You should have chosen a famous star's name or your favorite character in a book. My favorite book is Little Women. I think I read that book over 100 times. It would drive me friends crazy. Like Jo March (who was Louisa Alcott who wrote the book).
I think I may be more careful.. Am thinking of deleting my messages and possibly starting anew at a later date.. I have found another group that is to my specific cancer disease, so I can say Thank you for all who kept me steady until I found my way. Also, Thank you kearnan for the information and advice.
It makes me happy if I gave anyone advice that helped them but I am surprised bc I rarely know much about anything and find more information on this board than my onco gives me. She will even remark "Well, I guess you will go to you forum board and find the answers you want."
No, not private. When I first joined, I was able to click through the disclosures at the bottom (very hard to get to, currently) and learned that they share info w/ Pharma, etc. It's as if we're in a fishbowl with marketers, finance people, etc., looking in. Start-Ups like health unlocked just want to monetize the data, aka our lives and experiences. Apparently they're amping this up. Not surprising. Like, who did we think was paying maintenance on the website? Do-gooders? Welcome to hyper-capitalism.
Feeling low. Wind out of my sails
Faslodex vs Letrozole
New to this site.
Faslodex/Fulvestrant - how long on this treatment alone?
