De Novo Stage IV
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MinusTwo - There are ladies with no husband/kids in Mel's living room. Be forewarned - we're a large and chatty group, lol. Sometimes the page moves at lightning speed!
I like this page, because I think it's a different experience being plunged into Stage IV "without warning" and most of us don't relate to common early stage treatment experiences. Frequently, there's no surgery, chemo, or radiation and we start right on the "long haul" approach of targeted therapies.
Grayrose - we were dxd with de Novo liver mets about the same time. The spot in my breast was very small and shrunk below PET detection very quickly. What tx are you on? I hope things are going well for you.
As for me, I've been NED for a little over a year. I'm just hanging out, hoping the Verzenio keeps working, showing up for MO appts and scans, fussing with the doctor's staff or insurance company from time to time.
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Thank you guys for the responses.
Grayrose, One thing I wish I had done from the beginning is take photos of my cancer breast so the changes could be documented. It strikes me as so odd that my oncologists only wanted the scans as documentation, and no visual record of how the breast has changed outwardly. But I could have kept photos for myself, and I didn't think to do that. It would have been handy for asking questions and maybe it would have helped me get more physical exams so my mastitis would not have gotten as bad as it did. Mastitis is really rare among non-lactating women, even breast cancer patients only present with it at about a 5% rate.
Illemae and elderberry, thanks for the explanation of Mel's thread. I guess I can "woman up" and go introduce myself. It's nice there, and I like how members talk about all sorts of things, not just disease and treatments.
Exbrn - I remember when I first started on the Bone Mets thread you generously gave sensible advice and sympathy. Also, you continue to be a hopeful inspiration. I know we're not supposed to think of remission, but some people seem to have a good long grace period. I do hope science makes some gains in discovering the mechanism of that. And I agree that when your circumstances don't line up with the general experience, it can feel alienating. I think it's meaningful to keep showing up and reporting on the frontlines of the cancer battle, so others can benefit from what we went through, and so we can receive community support.
ETA: seeq, I think we were posting at the same time. Yes, I appreciate not having to read all through the early cancer threads because what they will go through will be different from what I know. Congratulations on being NED, that's wonderful! Long may it continue to be so.
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Thank you, nine twelve. It’s odd that I feel less comfortable on bco than I did years ago. I read the bone Mets thread but don’t participate as it was suggested (years ago) that I start my own thread since I wasn’t metastatic enough. That member later deleted the post and has sadly passed away but I still feel the burn and don’t wish to trigger anyone with my lack of suffering (which apparently was disqualifying). I am too late stage for many threads on bco and not mbc enough for other threads. However, after almost 66 years of being an oddball I am somewhat accustomed to not fitting in but it does sadden me. I sometimes feel as if I need to apologize for doing well.
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Grayrose, welcome. I'm sorry you're here, but I'm so glad you've found this thread. I hope you find it helpful.
Ninetwelve, I too notice this thread has been quiet. I will try to come in weekly to ask how everyone is doing. I have my grandson, daughter, and son-in-law living with us for a little while while their new house is being built. I try to get on the site once a day, and it ends up usually at the end of the day. I hope your testing went well.
Exbrnxgirl, you are always appreciated for your experience. I'm so glad you've had a long run and hope you get many more years. I'm sorry you felt you didn't have anything to contribute in the Zoom. I will say that we all have off weeks, as I've had a few lately, and I am not one that won't listen to someone with a lot of experience. I bet you have plenty to contribute, and it would be appreciated. I had such an off day Monday, the tears were flowing. I felt so much love and support. I felt much better after. I hope you think about giving it another try. If not, I totally understand.
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kbl,
Did you contact your MO about your recent aches and pains, as well as feeling out of sorts? Just wondering -- I would not ignore things but at least inquire.
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Hi, BevJen! I called her this week and asked what I should do about all my back and hip issues. I now have an appointment with a neurosurgeon. I’m hoping they’ll refer me to physical therapy and not surgery. My depression I’ve had for the last few weeks has lifted, and I’m feeling much better about that. I know I posted in one of the forums about my appointment. If it was here, please forgive the repeat. I didn’t want to go backwards and check.
I’m going to have my hair done this afternoon. Almost forgot all about it until I went to write a check and saw my hairdresser’s name. I forgot to put a reminder on my phone. Jeez, always have to do reminders or the brain doesn’t remember. I would have been sad. I like getting my hair done.
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Smart phone calendar reminders and back up cameras in cars are two of the greatest modern inventions IMO!
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exbrnxgirl, you’ve got that right.
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KBL, wish you the best hope you get some relief from these issues. Pray
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The ultrasound, 3d mammogram, and biopsy went well. I am ruminating over how incompetent I still am at scans. I never remember the questions that keep me up at night and always say no when they say, "Any questions?"
They treated me gently and didn't shame me about my ulcerating tumor or treatment history. Still sore from the biopsies. Results next week.
kbl, well done on having hair to cut! : ) - I know family can be time consuming, and I appreciate the time and the work of keeping a thread going. I also know that one person can't do it all and I will try to check in more often, too, and not just during the times I'm worried about myself.
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Olma61, thank you so much.
Ninetwelve, I hope your pain from biopsy heals quickly and that you get results quickly so there’s not too much worrying. I do have very fine hair but have never been on IV chemo, so I haven’t lost it to this point. I have a great hairdresser, who cuts my hair so I don’t have any empty spots where the hair is really thin.
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ninetwelve, glad to hear you got through the imaging okay and are recovering. : )
I have mammo and blood work on Tuesday, hopefully this report will be the same or better than last one. Still no approval on my PHESGO, but I was contacted by by my insurance companies go-between to sign some consent forms related to getting this approved so at least I know it is in process. I am 2 1/2 weeks late for my dose at this point but I am not freaking out, yet.
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Olma61, some of these approval processes are so darn frustrating. I’d be biting somebody’s head off. I hope you get it soon
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I wanted to let everyone know we’ve lost our sweet prairiesea. She was diagnosed with leptomeningeal mets a few months ago. She passed on June 8th. I am so sad. Mojos let us know today on our Zoom meeting. I remember she was so concerned about being able to continue to teach
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Thank you, kbl. I have been a stage IV member for almost 11 years. Each loss is just as difficult as previous ones. May her memory be a blessing to all who loved and knew her.
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Very sad to learn about Prairieseas. Two and half months ago she was still teaching and advising grad students-now she is gone. Her cancer seemed to move so fast. t least her suffering is over now. May she rest in peace.
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Thank you KBL. I know she loved teaching but I really wish she could have enjoyed some retirement. This is such a cruel killer.
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so sorry to hear about prairieseas thank you for letting us kno
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Oh no, Prairieseas... may her soul rest in peace...
Saulius
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Oh no - she was trying so hard to work through/with a 'messy' cancer and get to a point of some stability to retire. Thanks for letting us know kbl, though its always so very hard to hear of someone passing, especially so quickly.
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I’m very sorry to hear of Prairiesea’s passing. I don’t remember how long it was from her last post to us to her last days but I hope she had some decent days in between.
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Rosie24, I believe she told us in early April. I hope she had some good days as well.
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It is so sad to hear about prairiesea. Such a shock to hear of her rapid progression, then so little time after that. She really wanted to stay with her students to see them through. I hope she had some good days with her family.
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kbl, I appreciate that you let us know about prairiesea. I feel badly that things progressed for her so rapidly. From what I can tell, she was diagnosed de novo only a little more than a year ago. Sadly, that’s like the blink of an eye. My condolences to her family, friends, loved ones.
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It's sad and sobering to hear of a member's death. Rest in power, prairiesea.
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KBL thank you so much for the support and care for everyone in here, and sharing the news about sweet prairiesea. The last thing I remember she wanted to postpone her brain radiation to see her students, her passion for teaching was great. Rest In Peace sweet soul.
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thank you for passing on the sad news. My thoughts are with her family and students and her cirlce.
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I would not have known had it not been for mojos letting our Zoom group know. She knew her real name, so she informed us. I almost started crying right then and there. My heart hurt for her. Thank you, everyone, for your kind words for her. I wish her family could see them.
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Hi all - I've popped into this thread periodically over the past year but have largely stayed quiet. I can't tell you enough how much I appreciate each of you sharing your experiences, advice, challenges, etc.
My scans have been stable and Kisqali has so far been a wonder drug for me. Completed a 10 mile hike on the Albanian/N. Macedonian border with the kids and the dog this past weekend - something I never, ever dreamed possible in those early months after been thrown into the very, very deep end of this disease.
Anyway, I'm here and I need to stay connected to people who are also here and get it. I have good support, but it inevitably feels like people looking at me from outside a glass cage, (understandably) unable to truly 'be' with me.
Side note: I'm always tempted to use my name when signing off on these forums. Is there a reason I should avoid that?
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mexhay, Congratulations on the completion of your hike! Many of us remember falling into that abyss when we were first diagnosed. It is great that you learned to move forward. are doing well on treatment and living a full life. As for use of first name, some do. I don't really know the pros and cons of it. Maybe others will chime in on the matter.
I wanted to share prairiesea's obituary if anyone would like to follow the link. She was quite accomplished, earning her ph.d. from Yale, advocating for social justice, being a wife and mother. It is tragic that she was taken only a little more than a year after her diagnosis, yet reading details of her obituary it's clear she lived a very full life. It was just cut too short.
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