How long have you been Stage IV?
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@EddieJ : Welcome to this site. I have the same story as you. At the age of 60, thinking that I had a respiratory problem, I was found in CT for lung, bone, peritoneum metastases. My mammogram 6 months before was perfect. It was indeed a shock at first. Like you I received Xgeva, an AI and started targeted therapy. It's been 2 years now and you'll find people on this site treated for many years. I looked around at other sites, but none were specific to stage 4 like this one. It’s a real treasure to be able to interact with people who have the same experience.
I wish you a good start with Ibrance and hope that your lungs stay calm now.1 -
@soldanella Thank you so much for your thoughts and story. I am having some difficulty understanding all the acronyms (NED??) but being so new to this, I know it will take time. I guess I am just so surprised that I was not prescribed with surg chemo or radiation from the start and wanted to see if any others at Stage4 had the same treatment plan t start. Just being impatient.
I need to enjoy my time till my next pet scan; I am an optimistic person and don’t want to lose my optimism.
I need to sleep so will try again… I’ll stay in touch.1 -
@EddieJ, we're sorry for your new and shocking diagnosis, but really glad you found this amazing group. Welcome!
NED stands for "No Evidence of Disease". We know it can take some time to get familiar with everything. We have a link to a list of acronyms related to breast cancer that might be helpful as you get more into the details, here: Guide to Common Abbreviations
We admire your optimism, it’s a powerful tool! Take care of yourself, and we are all here to help when you need it. In the meantime, we're sending you lots of positive thoughts, and we're looking forward to hearing from you again soon.
Sincerely,
The Mods
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@EddieJ As is often said here, welcome to the club nobody wants to be in. It sounds like you are on the standard treatment these days for our condition, estrogen blocker + CDK4 inhibitor (Ibrance in your case). I'm doing really well so far on this medication regimen. I have an active life with daily moderate exercise and strength training (ok'd by my oncologist), despite my bone mets. My basic attitude is f**k cancer. There are some 125 people posting on this site right now who have lived over 5 years, quite a few who are at 10 years. I especially appreciate the clinical trials thread, which shows us that many, many new meds are in development.
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@tougholdcrow Thank you for reaching out and for the relevant info! I feel less alone - very few mention lung involvement. We were thinking this treatment was so sparse but all my research says it is on par for my diagnosis. My biggest hurdle is my lung capacity and my cough. I cannot wait to breathe well enough to get back to my workouts but, until recently, I didn’t even think that would ever be possible again. I am so much more optimistic now - your story and the other members’ stories here help a lot. Please know that I know we are all different and respond individually, so I am managing my expectations. But, wow! The possibilities are out there!
BTW, I have the same basic attitude. I pray your treatment continues to go well!!
please stay in touch! Thank you 🤗1 -
@EddieJ I also had lung involvement when I was diagnosed and had to have a pleurex catheter inserted. After less than six months, it was able to be removed. It took a while for me to regain my fitness-start slow and keep moving. I've been on the same treatment you are starting for over 8 years. I hope that it will work well for you too.
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@chicagoan That’s what I have, the pleurX. Still recovering from the insertion pain but getting used to it. My cough makes it more difficult but hoping to see pulmonologist soon who can help me with the cough. Happy to hear your story! I will take your advice - slow and steady wins the race. Just have to manage my impatience 😂! My DH has taken over my Pickleball sessions - he needs it more than me now.
I pray I have the same progress with this treatment as you!!Thanks to you all for reaching out! I feel lucky to have found you ♥️
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EddieJ, it's scary. I've been stage 4 for 4 years. Praise God!! I receive Zometa infusion every 6 months, take 75 mg. of Ibrance, receive Fulvestant injections 💉 every 28 days. This is doable. Enjoy every day and try not to worry. Be kind to yourself. Allow yourself times of tears and sadness. Include thinking about all your blessings. If you don't want to do something, then don't. You've paid your dues. You've worked hard and been there for everyone else.
May God hold your hand!!
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@EddieJ , you sound a lot like me. Starting January 2024 I was having some pain in upper sternum, especially if I pushed on it. Then the pain would spread to the right side of my chest. This lasted for 7-10 days, then stopped. What the heck? I though it might be costochondritis from a chronic cough I'd had since January 2022 after a "super cold." Anyway, this pain flared up every month—Feb, Mar, Apr, May. I finally saw my PCP in May and I told him something was not right. The visits to him during all of 2023 (when I complained of chest pain—on the left side in 2023—he kept telling me to take more Nexium! The Nexium did nothing! The visit in May finally convinced him to order a Chest CT scan. I was thinking it was just some strain in my sternum and rib bones. I get a call a few hours after my scan. It stated "highly suspicious for metastatic breast disease." I was floored, to say the least. My last run-in with BC was 15 years earlier (stage 1, IDC, DMX, Rads and Tamoxifen). Thought I had conquered the beast. I started H&P protocol and anastrozole in July. By September I was NED. I am continuing with the treatment and hoping that I don't encounter too many side effects.
@EddieJ , hope all of your imaging and treatments go smoothly. I have found everyone on these BCO boards to be very supportive. Always finding new ideas for treatment options and how to deal with side effects. Lots of success stories here, as well. Hope we all are one of them. Best to you!
Hugs, Pam
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@ssales13 , I hope that your bone biopsy went smoothly today. I'm sure you are/will be tired. Thinking of you.
Hugs, Pam
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@livinglifenow thank you for thinking of me! Yes it went really well . I was nervous but the nurse and doctor were both great and put me at ease and I felt no pain. I hope you are doing good today as well.
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@ssales13 Awesome! That is so great to hear. Yes, a good nurse and doctor can make a world of difference. I am doing very well today. Fewer aches since I switched to the anastrozole from the first manufacturer that I used. Although, it may just be a coincidence. Either way, I'll take it.
Heal well! Have a great weekend!
Hugs, Pam
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@livinglifenow oh I’m so glad you have fewer aches! Thank you I hope you have a great weekend as well!
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Hello,
Today it has been 2 years since I was diagnosed with metastatic cancer.
To my great surprise, I am still here and in rather good shape.
The journey had started badly with a lot of intolerance to the various treatments offered. Now I'm starting to find my stride and bounce back with each new treatment option. Even if it's not always easy, this forum is a very good source of encouragement and support.
Take care of yourself5 -
@soldanella thats wonderful on 2 years! I’m glad you are finding your stride and feeling good. I pray that you continue to feel great and that your 2 years turns to 20 years. Hope you have a nice weekend.
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Soldana - I think it was yesterday, that it would have been 2 years from my stage 4 diagnosis. It was sometime about now in January of 2023. Yes, I've had a lot of ups and downs, but have been generally stable and on the same treatment. I just hope I can continue with this for a long, long time, and I wish the same for you. I'm glad that you feel you've "hit your stride" and have some general sense of being able to manage all of this now. Best of luck to you going forward and may you have many, many, many more years!
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@soldanella Two years! Excellent. It is so encouraging to hear that people are doing will with MBC. So glad that you are doing well on your treatment.
Hugs, Pam
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It’ll be three years for me in Feburary, and I’m on third line treatment. I don’t think I’m going to match the heroic outlying achievements of many on here but I am very grateful for the collective wisdom and warmth.
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@emiliamarty three years is great as well! Praying that you find the right combo of medication that will work for many many many years for you!
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@ssales13 , @threetree, @livinglifenow :
thank you very much for your messages, it's so good to feel supported.
wow....i don't know if i'll turn the 2 year trial into 20 years! but i'm going to train for it with all my strength.
@emiliamarty : Congratulations on your 3rd birthday. Keep the faith, new treatments are coming on the market. Step-by-step5 -
Hi all on this chat/topic!! The mods have reached out to me to see if all is ok. FYI- I am not a big social media gal; not even on FB (my DH is & my buds get me there 😂.) This is first time for me on a community chat board or anything like it. This is all so new to me and with nothing to add (experience, info, happy/sad/scary news), I tend to keep quiet.
I have been keeping up to date on this chat where I feel I am in with the crew of peeps I most want to keep connected to. I am so happy to see you all celebrating birthdays and good treatment results! 🥳🥳🥳 please know I care and am celebrating with you - just quietly.
I am in a waiting mode now, still waiting for one drug to get approved and in my hands; bone biopsy scheduled next Tues and blood tests and such. Not particularly active since my breathing is still compromised and I am easily fatigued so feel like a lazy Lima bean not going to the gym. Thankfully my friends there are keeping in close touch - having lunch at my house on Friday! In fact, all my friends have circled the wagons and doing a fabulous job in making sure I feel loved and supported.
Please know I care and feel so lucky to have found you all! Please don’t feel like I’m gone; I’m here for the foreseeable future and will chime in when I think I can help in any way, just say hi if it’s been too long or need your guidance.
Sending hugs! Juliana2 -
EddieJ - I for one understand not being "super social" and on a lot of social media, etc. I'm glad you found us though, and we are here with as much or as little support as you want/need. I have to say that it sounds like you are doing pretty well overall, if you are on the one hand feeling like a "lazy lima bean" (love that) and are easily fatigued, but also having people over for lunch on Friday! I could not do that in any way shape or form. It's good that you have such a support system; more power to you - and them. Good luck with your biopsy and tests!
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Juliana, @EddieJ, I am not much for social media either. However, I, like you, am so glad to have found this community of people who understand what I am going through. The support and friendships here are truly amazing. Also, I have gotten lots of great information from reading many of the threads.
Sending hugs and positive vibes your way for tests and scans and lunches with friends!
Hugs, Pam 💗
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@livinglifenow @EddieJ @threetree @ssales13 and others..
Agreed! The support we offer each other is so special . And the trust and patience we model, along with the ups and downs, the strides and setbacks. The nuances of our stage 4 cancer journeys are distinct, and sometimes there is overlap and sometimes new pathways. Through it all I find hope here and resilience, and kindness. Which I love. ❤️ , both posting and simply reading along are welcomed .
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@rlschaller So beautifully well written and true!
All: About to speak to my college roommate- the only one in my army that doesn’t know yet. This will be tough but necessary. She is just back from a trip to Paris so I feel conflicted in bringing her down but, as we all know, life likes to throw curves. Friends for last 44 years… she can handle it!
Wishing everyone a calm peaceful evening! xo juliana3 -
@EddieJ Juliana, yes, telling others is a challenge. It was easy for me to tell all of my Book Club gals (who all live on the same street) at the same time—at Book Club. I knew if I told them one at a time the news would spread quickly and the information might be incorrect. Remember the old "telephone game"? There are still some people I haven't told because I wish to tell them over the phone (they live far away) and not via text or email. So, those have been hard.
Juliana, I think you and I are the same age—64? And, I have not yet told my college roommates because they live far away and, like I said above, it's difficult to get them on the phone. However, since I am responding really well to treatment, I hope to connect with them in a few months on the phone and share positive news about my treatment and progress.
I'm sure your roommate will be saddened by your news, but also very supportive. When my friends in town first found out, I got a lot of free lunches. He he!
Sending you good vibes for successful treatment and excellent results!
Hugs, Pam
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