Life does not end with a stage IV diagnosis (really!)
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Great pic! You look like a teenager 👍. Enjoy the wine cooler. My dd had one in her old condo but my granddaughter decided it was her personal child sized juice box cooler 😂.
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In an odd medical twist, I am scheduled to have surgery in mid-February for a non-bc condition. I have a sinus cavity with polyps that are now pushing my septum toward the other sinus cavity. I’ve had a massive sinus infection, my nose is always stuffy, and I have terrible headaches almost daily. Sometimes the pain radiates down my gums. I was originally going to have the surgery right before Christmas. That was canceled and I asked for a February date. Then all elective surgeries were canceled. Today, the surgeons office called and said I could have surgery on 2/12 as I had gotten moved up on the list now that they have resumed elective surgeries.This is not a life threatening condition but it’s impacting my QOL in a big way. Think good thoughts for me that it won’t be canceled again 😊.
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Exbrnxgrl.. we still have to take care of our bodies amidst all our cancer treatments.
You sound like you are suffering and 2/12 needs to come sooner!
What will your recovery be like?
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Ugh! Sounds painful. Hope it all goes well❤️❤️
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Thank you both for your good wishes. It’s out patient surgery and a week of rest at home should be sufficient. That week is our Presidents week break so I will be able to return to work on 2/22, just in time to greet students in person for the first time this year
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Caryn,
Good luck with your surgery-I really hope it goes forward and you get relief from the headaches and pain. Must be very challenging to teach with all that going on. I'll keep you in prayer through the surgery.
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Caryn, I can definitely see how the sinus issue would affect your daily QOL. I’m glad the surgery was finally able to be scheduled. You are probably counting down the days now, especially since you had to postpone clear from before Christmas. I hope it all goes smoothly and that you are feeling more yourself afterwards as you heal.
So it sounds like you will be going back to working in-person at school? Wow! You have a lot to look forward to! Best wishes to you!
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Caryn, I'm so glad you posted this. I, too, was diagnosed stage 4 from the start over 12 years ago. I also hesitated to post on any of the forums because I felt that no one wanted to hear from someone who has gotten this far. A little while
ago, I returned to BC.org after the other shoe fell. I have given accounts of my challenges with ZOMETA side effects. I wanted to warn everyone about it. I also realized that my long term association with stage 4 might benefit others who were told, as I was, that you're going to die soon. I, too, have my tiresome and painful moments, but I've been enjoying my retirement by keeping my mind busy. About 5 years ago, I planned my funeral, my obituary, my plot, and other details. My daughter was with me and she, the funeral director and I had an enjoyable time planning. I laughed harder than anyone.
That being said, whatever happened to the gallows humor posts? I always used to read them when I was active in the past.0 -
I am glad you are here amontro and there are definitely women here who want to hear from you
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Amontro, when I was dx de novo I was in disbelief and worried, but Caryn was one of the first who gave me such hope for longevity. Now I've "met" so many others like yourself. I think it's such a positive to let newbies know they are not necessarily headed straight to the grave.
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I will need to look at this page more often, for hope, coping, strategies. I am going on year 12 fighting this beast. This BC (number 3) is more incidous than the previous. For the first time DR has said manage/control rather than cure. She has told me to quit the Ibrance/Arimidex, because it is not working. She is hoping a CARIS test will point to a targeted therpay Feeling depressed, anxious, not sleeping well. Does anything really work?
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Tamoxifen (anastrozole casued joint issues)
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Long story short, BC in R-axilla DX 9/2019. Start Ibrance/Arimidex. Regular CTs.
12/2020 - swelling shoulder, loss of motion, rash. TMs going up. PET 1/2021 shows it has spread all over, but not in organs
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Bluegirl, you have certainly been through the wringer for a long time. It's tough to have gone through all you have. I'm not familiar with the CARIS test, but hope it can give you good actionable answers for moving your treatment in the right direction for better days ahead. Reaching out with a big virtual hug.
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BlueGirl, It's hard to wait but important to try to learn why the cancer is resistant to the initial therapy: 1) ESR1 mutation; 2) PI3KCA mutation; 3) Her2 mutation.? Or something less common, like amplify FGFR1-3 or convert to triple-negative. Remains confined to bone, so not the most aggressive?
1) ESR1 responds to faslodex-verzenio (except not the Y537S mutation) but even better might be the clinical ELAINEII trial (lasofoxifene-Verzenio) or an oral SERD trial, like the one Dee is taking. The ESR1 mutation can be followed by blood test and if it gets eliminated, your prognosis is same as wild-type ER. Fortunately ESR1 mutations remain sensitive to Verzenio.
2) PI3KCA is targeted by Piqray, oral SERDs or other Faslodex combinations.
3) Her2-mutant, might try the SUMMIT trial that combines endocrine therapy with Neratinib.0 -
Amontro
I am so glad you posted. I too was stage 4 from the beginning but they did not catch it for 2 years despite the complaints of pain and xrays. They sent me to PT, chiropractor, and acupuncture. When I finally went to a sports dr he did an mri and found the cancer. By that time it had spread to my pelvic bones, ribs, spine and liver. When I went in to see the oncologist he said sorry now that we know where it is we see that you had it in 2016 when first diagnosed. He told me I had three years. He wasn't going to do any tests and no biopsy and no radiation for pain I was having because it wouldn't do any good. Needless to say I left there a mess. I went to my old radiologist on my own and she was tremendous. Got my scans and biopsy for me. And gave me recommendations for a new MO. And encouraged me that I could live with this for some time.
It's been a year and a half and I finally found a drug that has kicked it back a little. The first 4 failed. So I am glad you are posting. You should be proud of the 14 years that is quite an accomplishment and I hope to learn from your experience!
You are an inspiration please continue to post!
Julie
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bluegirlredstate and jjzn,
Welcome to this thread! This is a great place to talk about the “normal” life moments we have while living with mbc. There are enough threads on bco dealing with our medissues, so this thread is a respite from that.New ventures, vacations, work, play, etc. Even the normal ups and downs of life that unfold despite our mbc. We hope that those with mbc don’t automatically stick a foot in the grave as improving tx is allowing some of us (sadly, not all) to live fairly normal lives.
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Exbrnxgrl, I like your gentle reminders to celebrate the goodness in our lives.
My counselor for depression suggested I attempt a short walk around a lake or stream..even if 5 minutes.
It was nice to hear nature..really listened. It was good medicine for me. Baby steps.
My DH are going away for 3 days in our tear drop RV..super isolated with nature. I need that.
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sandibeach,
Thank you! I don’t want to be the thread police but I wanted this thread to be a respite from our bcmedical issues as well a way to encourage folks to realize the many normal things that go on in our lives despite mbc. I know that not everyone is in this position but I hope this thread can be an inspiration to those who are living with mbc.
On another note, 1 week until my sinus surgery! I am so happy and look forward to the day when I can breathe normally and not have terrible sinus pressure and headaches. Besides that, I celebrate the fact that this is not bc related.
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We've had lots of snow in Chicago so I've been shoveling and shoveling and will do some more in a few minutes. It's good to feel strong and able to do this. I also dusted off my cross country skis! I hadn't skied in over 10 years-partially b/c of limited snow and partially b/c after cancer I wasn't sure my little damaged lung would be up to it but I had some great experiences this past week. I've been out 3 times-and even went to Wisconsin to tackle some hills. I was pretty sore yesterday but it felt good to use those muscles.
For those of you who love reading about long-lived women with MBC, here's a great article: https://madison.com/wsj/news/local/health-med-fit/...
Also, University of Wisconsin is studying long-term MBC survivors. For hormone positive MBC, you are not considered long-term now until after 10 years!!! For other types, it is 5 years. If you qualify, you may want to volunteer at https://outliers.cancer.wisc.edu/eligibility. I am hoping I can do this after I hit 10 years but I know some of you are there now.
Thinking of you Caryn and praying that your surgery will happen and go smoothly.
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Chicagoan, thanks for the article/study links.
Caryn, hoping for better breathing with your surgery next week.
We've just sold our home of the past 30 yrs. Will be a really big, strange change, and I'll miss it, but not the cold, snowy winters. A new chapter begins.
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bliss,
Thanks for the good wishes. Where are you moving to
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We'll be moving to the Denver area where I'm from originally. This will be half the altitude and much less snow. The altitude was starting to bother me to where I needed oxygen at night, so we figured it was time to leave.
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Best of luck with your move. I grew up with east coast snow but have lived in the San Francisco Bay Area for over 30 years. If I want snow, we drive to Tahoe
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exbrnegrl - thank you for the words of encouragement, living life as normally as one can and not letting cancer make the decisions. I saw one very good video recently where an ND was envited as part of the team. A 12 year old had been diagnosed with cancer and was really depressed that he would not be able to go on a planned camping trip. The ND asked questions about the treatment, the cancer, and how urgent the treatment was. As it turns out, waiting a couple of weeks to start treatment would not make a difference in outcome. And she got the other DRs to agree on postponing treatment and encouraging the kid to go campiing which really lifted his spirit.
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Caryn,
Thinking of you and hoping everything goes well tomorrow with your surgery.
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Caryn-How did your surgery go? Check in when you feel up to it. Thanks!
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Thank you all for the good wishes. I report to the hospital at 6:00 am tomorrow. For some strange reason, both of my daughters are taking me even though all they can do is drop me off at the curb! I suspect that they'll be going out for breakfast or a run while I'm in surgery. I think I'm looking forward to the rest as this week has been crazy at school! They estimate that I'll be done by noon. I will post when I can but I really appreciate the good wishes 😘.
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positive vibes for tomorrow, exbrnxgrl
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This was taken right after I got home. I was so loopy! My eyes, though smiling due to good drugs, look like swollen slits! Older daughter and granddaughter stayed over last night and younger dd will be on day duty today. That should be the end of their TLC assuming all is well. They both live close by if needed (well older dd and grand left for NJ today, but younger dd is available). That’s my first born reflected in the mirror.
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Caryn,
That looks uncomfortable but glad surgery went well. Hope you have a restful day today, full of TLC.
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As a fellow sinus sufferer (but not to that extent for sure!) I know how annoying sinus pain and infections can be. Best wishes for a speedy recovery and back to pickleball!
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