thanks for all the responses. I’ve been fighting metastatic bc since 2011 after 19 years from original diagnosis stage 2. Prognosis was very good. Surprised after 19 years. I was put on femara and Zometa. Then 2018 switched to ibrance , fasladex and Zometa. Oncologist retired so I went too Sloan. I ended up with necrosis of jaw. Got really bad. Hospital 11 days. Home with pic line. So prior to this hospitalization I had c-diff dentist gave me an antibiotic that’s on the list for causing c-diff. 5 days hospital. Oral surgeon snapped off some dead bone in jaw causing spread of infection. She gave me oxy. Overdosed hospital 2 days. Then that hospital for 11 days. Very week. P t at home. Walker etc. then month later emergency small bowel obstruction surgery. 3 weeks in hospital then 1 week in rehab. I wasn’t home most of that time. Sister wouldn’t let me be alone. Finally I go home in November. Then ended year with Covid. Thankfully mild case. So during that 6 month period I didn’t take ibrance only fasladex. My oncologist said I was on zometa too long so that was stopped. I think I developed the nodules because I wasn’t able to take intance It had kept me stable. So now I was taken off both ibrance and fasladex and put on oral chem. Not feeling great but tolerable. Very tired and a little nausea. Then hopefully nodules will be gone in July when I get PET/CT scan. Sloan only does PET/CT every 3 to 4 months. That covers everything. So I’m confident I’ll beat this too. Just unbelievably bad year. I have to stay around to aggravate my kids haha.
ibrance : thanks for all the responses... - SHARE Metastatic ...
ibrance
Greetings Sister Warrior, and yess true Over-comer. You are strong, even when you think your weak. 😊. You are still standing strong.👍😇. I hope pray you have another 19 plus years to spend with your loved ones Amen.XoXo🙏☮️🌞✝️😇
stay strong my darling and your in my prayers I too have the same it’s 5 years for me now . I know how tired I am so you are some strong lady .Stay focused on your kids . They will get you through . I lost my husband six months into this and have only one son who lives five hours from me but he has been my rock . Love will get you through.
So sorry for your loss. Stay strong.
My goodness you’ve been through a lot. You are a very strong woman with a great attitude! And we have to be, this isn’t a fight for the week. I’m getting a bone scan and mri this week. I’m a little nervous for the first time in three years, as I have a lump on my spine. I only get them three times a year as I’m sure that has something to do with Medicare. Best to you and stay strong! Hugs
Sharon
PS. I just lost a male cousin to breast cancer, he fought it for five years. He was 64 when he died.
Sorry for the loss of your cousin. Best of luck for your scans this week. It’s good you’re getting them done
wow! God Bless you and all your strength.💕
Wait! What? You’ve been 12 or 13 years at stage four? That’s awesome. Okay there were a few blips in the road lately but hey! You’re well past the mythical five year mark! I passed 9 years yesterday. I must admit my journey has been a bit less suspenseful than yours but we’re all different. You have 10 years age wise on me too. I hope I can do as well as you and be as positive as you too!
Thanks for sharing!
All the best
Kerry
Thanks. Just be alert with treatment and doctors. If you have doubts or just a gut feeling. Don’t ignore it. It’s your life and with cancer as we all know you can’t let it get ahead of you. I’ve had a few oncologists these past 12 years. 2 retired and doctor that took over made dumb mistakes. One spent 15 minutes of my visit talking about thanksgiving dinner. Then said where were we. I gave her a couple of visits and didn’t feel right so I left. Since my MBC diagnosis at the time the oncologist didn’t wan to radiate. It was 1 lesion on the T6. Well I insisted and because of that I’ve been stable til this last year when I couldn’t takes meds. I don’t play games. I’m nice I joke around but I’ve sat right next to doctor when he/she is looking at computer screen. I ask lots of questions. Even if I don’t understand it all, it makes me feel more confident in my decisions. Knowing doctors don’t hesitate with answers. I read the doctor too not just the reports. I’m not happy about not being able to take my meds that I know caused the cancer cells to grow. But I’m dealing with it head on. Remember even though they say you are in remission microscopic cells are floating around so diligence is a must. Even we have to take meds forever well that’s ok. We’re here to take them. Whatever the side effects. Know we have to rest and try to stay as healthy as possible. Of course I’m not perfect!!! It’s your new life just accept it learn from it and smile. I really don’t think about it until I have tests then it’s back in my face. But I know that’s how it is. Usually driving home I look at the sky thinking of of all the wonderful things in my life and it makes me smile and that’s the best thing. Stay strong everyone
I hope you are around many more years to annoy your kids lol. Praying for your positive outcome. What an inspiration you are!! 💗
No fiction writer could have dreamed this up! I am so sorry for all the pain, suffering and worrying you are going through. I too have unrepairable damage to my body suffered from a mistake and a cover-up at Memorial Sloan Kettering. Still, I think there are some wonderful things they do there. It all comes down to the doctor. I sincerely hope that you have some remarkable dr that is going to carry you through this ordeal and take you to the bright side where you can see an improvement. God bless you and keep you! XXX OOO
Sometimes I think I am a fool because I live in a city with one of the top three cancer centers in the country, MSK, yet I go to a hospital that is not in the top 10 for mbc. I am now thinking maybe that kept me safe from medical errors. 🙃
I can see how you would feel. But like anything else you have to stay on Top of it. In a large hospital like Sloan some could fall through the cracks if they don’t understand the system. But you have to be heard. You have to know when tests are due and exactly what’s happening. I’ll ask them if a test is due. I go on the portal and read my labs and reports. I make a list of questions. I had a concern about the first nodule I just got last fall. I pushed and once she (dr) realized how I was feeling she went back in all my records most of which I gave to her from 1993 when I as first diagnosed. She knew I needed the time with her and she hav it to me. Be the controlling force in your care. Get second and third opinions and I have. I know it sounds daunting but you can’t afford not to be. Love to all
Of course I do al of that. I am also at a large hospital in Manhattan, just not MSK. I have to prompt oncologist for tests, etc. I do read my reports on the portal. (I have a PET/CT tomorrow, and will see the radiology report well before I see the oncologist. I don't love that.) I also bring her research. Sometimes that helps. Other times she blows it off.
I really was responding to Jersey Jazz, and remarking, somewhat facetiously, that at least I haven't been maimed at Columbia as she was at Sloan, and you seem to be saying you were.
It sounds like you were taken off Zometa after you got ONJ? That can't be. I was begging my onc to get off Xgeva for two rounds and finally refused, but still got ONJ. Took too long to get out of my system. I don't understand how the oral surgeon snapped off dead bone. In my x-rays, the dead jaw was separated from the rest of the jaw. Had to have it cut out. The periodontist at Columbia who did the surgery was great.
Wow well right now I’m seeing Sloan dental. Much more conservative. As for Zometa. They would take me off of it for dental work but obviously not enough and then being told too much I’m glad I’m off now. I never had osteoporosis so it was probably overkill to keep me on it. Prior to Sloan I was in Greenwich and before that west Harrison both retired but subject of Zometa never came up Hole in my gum with bone exposed I have a partial but need to rake it out to eat it’s going to take time for the gum to close up
I like Greenwich Hospital. At least the ER was much better than White Plains.
They really don't know (they told me) how long it takes for the bone meds to clear. It is a long time, many months. I have a complicated partial they created, because I lost 3 teeth on top right and 1 on right towards the front, and it is one piece that swoops around. The teeth it hangs onto are not well grounded because of missing bone. I had to stop using it to protect remaining teeth. I liked it and could eat with it and smile without worrying, but now....I don't know. So many thousands of dollars for that denture. I will probably wear it when performing in public.
They always say ONJ is rare, but it isn't that rare. It doesn't matter if you are the one who gets it. The Xgeva I was on did a wonderful job on my bone mets, but I should have gone off once they were gone. Now I can't take anything for bones. That isn't good, either.
TammyCross---Your, "while performing in public is intriguing. Please tell me more. FF-S
I would love to answer this -- afraid it would be at some length, but I have to leave for my PET/CT. Had my first serious progression in my scan in September. Trying to see if the ribo + exemestane worked. If not.....A tumor pressing on my lung caused a partial collapse. I am still able to dance. It is a great program, and I will talk about it later.
You are not wrong to go to Columbia. It is about the Doctor and the research they are conducting. US News , a magazine who sells advertising, is not the definitive word on cancer center rankings. Wherever you go you will receive the standard of care. What differentiates the centers are the doctors, scientists, clinical trials, research, and amount of research funding flowing to each cancer speciality within the center. Where do the N.I.H., and the pharmaceutical and biotech companies put their research dollars and with whom? That is where you will find the best specialists for each cancer. The US News ranking has flaws. Each year they change their focus. One center might be the best in one cancer speciality but not ranked as highly by US News and vice versa. The rankings are simply a magazine’s opinion. Follow the doctors and the research dollars. Columbia has outstanding doctors and ongoing research. I knew a Thoracic Surgeon who flew up to Boston each week to be treated by an oncology specialist for her cancer at Mass General Hospital. Yet US News doesn’t rank MGH in the top three. She knew it is about the doctor.
I agree. Not a lot going on re: mbc at Columbia. it varies by specific apartment. I don't go by US News, or Newsweek. It has struck me that Dana Farber is doing the most research relevant to my situation. When I tell my oncologist what they are doing, she just says she is doing "standard of care," or says what Dana Farber is doing is not "standard of care." It seems to me it is advancing beyond what is well established. I am not saying it is bad, but their research focus is not helpful to my case.
And you are right, it could be an excellent doctor in a department that is not ranked as a top medical center in a particular specialty.
Agree Dana Farber is doing a lot of cool things in MBC research. They also receive hefty funding from the N.I.H. in addition to private donations and industry funding. They fund and lead their own trials. Other Breast Cancer Specialists from around the world come to Dana Farber each July to learn from their Breast Cancer Specialists. Definitely worth the Amtrack train ride for a second opinion. They will work with your local oncologist. I left my first oncologist very fast and never looked back.
The nurses in this doctor's office have a very low regard got MSK. Strangely, the IR dr that slipped with the instrument is the only one that has been honest with me and that I am in contact with. She will be looking at the scan of next week and pinpointing where the fistula is if it is still there. No one told me of the fistula. I read about it in the notes. It was there with other words which I did not understand at first. Then they used the word.
She is the only one that knows where to look.
So a mixed bag. One wants it all: someone who communicates and looks, but doesn't slip up!
I just typed you a private post but could not find the send key and so I slipped up. Maybe if you sen a private post to me there would be an obvious send button. ( and me with all those degrees).
Just came out of the hospital after a full week and no answers, just more medications.
You sure have had some major things to deal with these past 6 months. May that wave have come to an end! The fact that you’ve had 13 yrs so far with the metastatic is fabulous. May you regain your strength well and that long run continue!
thankx soooo much for sharing your story... gives me hope and strength!
Wow lady,you are one strong person. That is a lot to be thrown at one person. You are definitely a fighter,good luck and God be with you on your journey. Love sent.
thanks I just posted more of my journey. I think it’s helpful for all of us. Much Prayers
I am sorry about your eventful year. May this be a better year for you. I am thinking about going to Sloan for a second opinion. I am in Virginia getting ready to move to Tennessee. It is a long ways no matter which state I am in. Good luck.
keep up your fabulous attitude and keep posting! ❤️
I'm so sorry you went through all of that. I sometimes feel I'm over reactivate to ailments. Your experience reminds us all to be our own advocate and question our treatment and new medications prescribed. Thank you for sharing your experience and hoping smooth travels to you.
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