Life does not end with a stage IV diagnosis (really!)
Comments
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I just hit the 15 year mark. I am living and loving life. Feeling great, watching my grandchildren grow. 9,9, 7,6 and 1.
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Wow Janice, congrats 🎉
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Fifteen years! Yay, you!
Tina
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illimae,
Congratulations on your milestone!
Janice54,
Wow is about all I can say! Please stop by more often as I think long term stage IV members give hope to many, especially those newly dx’ed with mbc. It’s also my casual observation that there are more of us now then when I first joined in 2011. I sincerely hope our numbers grow and then, eventually, a cure! Take care
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Mae congrats on the 5 year mark! Janice54, wow 15 years is amazing! You give me such hope 😊
Cure, I’m glad you are having such a wonderful time in Hawaii! That’s a great picture! I lived in Hawaii for 5 years, 2008-2013. I loved it and miss it, it was such a stress relief! Having a bad day and you can just walk outside and see the mountains and the ocean. My DH and I still refer to it as home sometimes. We lived on Oahu but traveled around a lot. We’re hoping to get back to see friends soon.
Kikomoon, I hope you enjoy your adventures!
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katyblu,
That sounds much more pleasant than my 6 weeks of living on Oahu, at a Holiday Inn next to HNL, before H-1 was open all the way to the airport (1979), and we had no cars. We did take the bus to the Ala Moana Shopping Center and the Waikiki area. I remember climbing up the scaffolding of the not quite finished H-1 and throwing firecrackers off the sides on July 4th. Oh, and we ate most of our meals at the Holiday Inn as we had a daily meal allowance there ☹️.
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It is so amazing to read how long people are living long may it last. I hope everyone has a great time traveling, having fun, working if that is what they want to do, hanging out with their family, friends, and animals, and just enjoying life.
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Medical care is a major component of the stage IV life. I have often mentioned that Kaiser Permanente, an all inclusive HMO, has an almost seamless system for integrating and coordinating all aspects of medical care. Well, I have spent four days trying to arrange a simple TB test! Although I retired from teaching in June, I will start subbing 2-3 days a week beginning in December. I renewed my credential and needed a current TB test. Easy peasy no? Should be easier than arranging Covid19 vaccines or seasonal flu shots. Nope. I went on the Kaiser website and found out everything I ever wanted to know about them except how/where to get the test! I messaged my PCP's office and got an out of office reply. Later that day, her nurse messaged me and said she passed my message on to the department that does these tests and they would contact me. 24 hours go by, 36 hours go by and finally 48 hours go by and no contact! Messaged the nurse again but is was Friday so no answer over the weekend. Messaged again on Monday morning and finally got in contact with the correct department. Whew! I now have an appointment for next Tuesday with the follow up reading on Thursday. When I was working, my school district not only reminded us of when we were due for TB tests but had someone come to the District Office to administer/read them so this is the first time I'm doing it on my own in decades!
This is a very minor complaint but something that would happen whether or not I had mbc. I am thrilled to be alive and kicking for these normal everyday events!
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Wow! This is the longest outage I’ve ever experienced on bco
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I am a newbie here. Hi everyone. I checked in about a year and a half ago when I was first DX'd with Stage IV. I am so heartened to see so many of you thriving for long periods of time. Congratulations and thanks for being strong and determined and for paving the way for those of us who are new. I gives me so much hope and encouragement. I started on Letrozole back then.My markers went down from 179 to 56. Each appointment was more encouraging until yesterday. My CA27-29 went up to 79. My MO wants to watch it for a month to see if the jump was a fluke. What are your experiences with basing treatment on tumor markers? I am grappling with my fear and apprehension today. I was definitely living in a world of delusion for several months. Reading here tells me I can face what comes next. I have some terrible dental problems that I have put off due to Covid. Now I have to get this done! I have a dental phobia, so here we go! Thanks again for giving me some hope. Today has been a rough one.
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I had a 30 point jump in early spring. MO wanted to watch, did order PET/ct. Nothing lit up. Then my DH died, and markers went right back down. So, for me it was stress. I also had a nuclear bone scan last month, nothing lit up. So is it possible you are dealing with a lot of stress
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I thought it was my phone why I couldn’t get in. What happened with BCO
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Spookiesmom. Thanks for that information. Yes, I have been dealing with a great deal of stress. Our 47 year old daughter had us terribly worried this summer before she agreed to go in for alcohol treatment. While that was going on, my husband and I sold our house and had to pack up and put our things in storage until our new house is finished. The builder is 4 months behind. We have a place in Florida, so we were able to spend some time there. The packing was so hard on both of us.. so many years of accumulation. It is nothing on par with you losing your DH, but watching my daughter deteriorate was pretty devastating, So while writing it down, I realizestress has been huge.
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GiGiL,
Welcome! I am sorry to hear about your dd but if she is in treatment that is a step in the right direction. Moving is also a stressor. Funny how life continues to go on all around us while we deal with mbc. Some of that is happy, like our travels, and some just the normal struggles of life. Take good care.
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GiGi, welcome back, but I'm sorry to hear about your new worries. I think many are divided on tumor markers. Some MOs use them, some don't. I can't really get a straight answer out of anyone. My MO tracks them, but they've always been sort of stable. Even when other counts are higher or lower than the normal range, she doesn't really panic (although according to Dr. Google, I'm probably going to drop dead within a week! haha).
Glad the BCO site is back up again. I was hoping it was just my computer, but when I couldn't access it on my phone, I figured something was up. I sure missed all of you!
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For as much as I didn’t intend for this thread to be a discussion of tx, we have hundreds of those, a quick comment on tumor markets. My mo has never done tumor markers. It well known that they are not accurate for many folks. If I have pain or concerning issues my mo orders a PET.
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Thanks ladies. It feels good to be able to talk with all of you who are walking the same walk that I am. Your knowledge and experiences really help me to sort things out. Man, I haven’t worked so hard in a long time packing our house. I was so proud of myself that I was able to keep up with my dh. He is a big strong guy and he can do a lot of work! He is however in his upper 60’s and I am in my lower 70’s, so I think we both wore ourselves out. I am so gratified that my dd has now acknowledged her situation and is taking well to her treatment. She has always been a good person, who puts up a brave front. She has a handicapped child, and I have worried that she wasn’t acknowledging what a rough road she and her husband have had to walk. There is a definite danger to being too stoic. We are all learning to communicate better with each other. I am relieved to be getting back to some kind of normal for rest and diet. Hopefully that will help. I have never eaten so many Door Dash meals
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I want to respond to your entries, Gigi, and will soon. For a minute, I'm hijacking the thread to address the outage here on bc.org. Last night I couldn't get on it at all for awhile. Then I was able to access the "Steam Room" thread to ask about it and someone said there was an outage. This morning I had limited access to one or two threads. Currently I was able to get into "Active Topics" and click on this link. But if I try to go into the "Stage iv only" section, I get the application error page. I think there's some glitches still needing worked on.
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divine,
Although I seem to have access to all parts of the discussion boards, I am still getting the error message from time to time. I have no recollection of something this serious and prolonged happening in my 10 years on bco.
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I have recently received my Stage IV diagnosis and am a week post op from a Bronoscopy. I am overwhelmed. I'm not sure I even answered the diagnosis questions on here correctly. I did my initial breast cancer treatment and truly believed cancer was in my rear view mirror. I am 8 years cancer free…or so I thought
. My cancer was caught in May when I had an implant malfunction, but I was not given formal diagnosis until October 26. A chest MRI was done and then a biopsy. The first biopsy came back ok and we watched the spot for three months and then I had a rebiopsy on my lung again. The spot had grown and came back with the same cancer cells as my BC. I'm devastated and feel like I have been given a death sentence and have not been able to get from Why Me? to Why Not Me? My oncologist has brought up Disability and I feel like that is defeat for me. These are just some of my thoughts and look forward to your responses and encouragement. I'm not sure how to start my own post….I just received a phone call that I start faslodex on November 19th. Just a phone call telling me when to show up with no discussion….I asked for a return call from a nurse and she answered my questions the best she could. Of course I looked up meds and have now scared myself to death…I am all over the place!Thank you Vicki
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Welcome, vraew,
You can make your diagnosis and treatments appear in your signature line by going into settings and changing the questions you answered to public. The default is private but if you change it it will appear on all of your posts.
This thread is mostly geared toward theways stage IV lives still have plenty of normalcy in them, rather than a thread to discuss treatment specifics and medical stuff (Check out all the stage IV threads). You mentioned bronchcoscopy so I’m thinking that you have lung mets. You’ll find lots of threads on the topic and treatments if you browse through the stage IV threads. As far as disability, that is something only you can decide. Some of us are on disability, others continue to work. I worked for 10 years after my stage IV dx and retired in June. I literally have a single painless bone met and felt well so there was no reason for me to go on disability but circumstances differ for each of us.
Check out the stage IV forum and find the threads that pertain to you. Take care.
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Vraew, so sorry you recently learned you have mbc. It is a lot to grasp and will take you time to adjust. As with most or all of us, it is “learn as you go". One reason it's so difficult at first is because there seems to be soo much new information to absorb. The thing this particular thread is saying is that life can and does go one even after this diagnosis. We see ourselves as living with mbc, not dying of it. You will start treatment and keep moving forward and hopefully will see that you can still have good, even wonderful times in spite of mbc. I know I did not believe that myself at first but was happy to be proven wrong.
Gigi, I hope your daughter gets the help she needs at the treatment center. I can understand what a difficult situation that is for you. We want the best for our (adult) children so it's hard when we watch them struggle. Your move sounds very exhausting both physically and emotionally with having to sift and sort through what you've accumulated over the years. But it sounds like the bulk of that is done so good for you!
Something I learned in the last couple of years is: it is a good thing to devote time each day to healing. Give it priority. I encourage you to try to find about an hour a day for yourself to do what you want and to relax. This can look like many things. It can be doing the same thing every day like reading a book or having a cup of tea, or it can be something different each time. You might want to: listen to music, meditate, take a walk, take a nap, build a puzzle, take a shower; deep breathing exercises are great, too. Journaling (even if it's about your frustrations) or writing a couple things you're grateful for each day are also healing activities. Give yourself that me time without guilt.
My doctor doesn't do the ca27-29 test so I don't know what the numbers mean. But if stress is affecting you, try making small, mindful adjustments to de-stress. You are worth it!
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My TV and internet were out for well over 12 hours yesterday! I didn't realize how dependent I'd become on those things and using my phone for internet access is just not the same. But my big news is the arrival of Pumpkin! Pumpkin is a one year old, 7 1/2 lb Chihuahua. She is a rescue, originally from Texas. They don't think she was abused but was clearly neglected. She is sweet, affectionate and playful but still pretty mellow. She has been in my home for less than 24 hours but already seems quite comfortable and no potty accidents! I haven't had a dog for two years and started looking for one when I retired. I have seen so many dogs (pet finder website) but knew I would recognize “the one" when I saw him or her. I am so happy! The woman in the photo was her foster mom. -
Congratulations, exbrnxgrl! I'm so happy for you! She looks sweet.
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vraew: Hello and welcome to our "club" This is a great site for as you begin treatments and living with Stage IV. There is so much to come to terms with, treatments lines, what to tell loved ones. When I was first diagnosed I felt like I was alone on a rudderless, oar less, leaky tiny boat in the middle of the ocean. Then I found shipmates. Here. And I patched the leak and found some oars. Now where is that damn rudder? Not going to lie. The first while is going to feel awful. It is awful. Don't be afraid to ask for help with insomnia or anxiety. It does get better. This site is where I went when I wanted reassurance that I wasn't dead yet.
There are sites specific to treatment lines. I always say "Don't go to Dr. Google" and then I go and do precisely that. And terrify myself. I am a slow learner. :-)
Divine is correct. Take time for yourself. I must admit that, frankly, I was so twitchy and out of mind I found it hard to settle and set aside an hour. I did crosswords. I watched a lot of TCM. Going for a walk helped me.
BREATHE
.then come back and say "hello
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exbrnxgrl; Pumpkin is a darling. I wish you many happy years together.
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awwwwww❤️❤️❤️❤️Congratulations to you and your furkid!!!!!
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exbrnxgrl, I love Pumpkins sweet face!
Vraew, come join us on the lung mets thread https://community.breastcancer.org/forum/8/topics/...
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Congratulations on the new Pumpkin!! What a sweetie!
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Pumpkin is so gorgeous. How lovely of you to rescue her and I am sure she will repay your kindness
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