Life does not end with a stage IV diagnosis (really!)
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Congrats Parakeet! Hope you enjoy many happy years in your new home.
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Congratulations parakeet, I’m happy for you.
Hello, newby here, just diagnosed with MBC to bone, no treatment plan yet. Pet scan scheduled for 10/11 to see if cancer had spread to other body parts. Is pet scan the best way to go or ct scan is as good? I am concerned about too much radiation exposure. I was hoping it was not met, all my labs markers have been normal except for Calcium and inflammation markers; myOnco said it’s unlikely a cancer because he hasn’t seen it metastasis to fibula (thin bone in lower leg) …. From unlikely cancer to very aggressive. My emotions are up and down, trying to be positive and hopeful... I just want to freeze the time because I am afraid with luck, it will be very bad.
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Congrats, Parakeetsrule! And wow - quick closing!
Welcome Anx789. Sorry about your recent dx. You will likely feel more confident when you have a treatment plan in place.
In this thread, we talk about good things we do in our lives with MBC...after the shock wears off a bit --such as trips planned and taken, new skills and hobbies, and accomplishments.
I can tell you my scans have always been PET-CT without contrast, but I don't have bone mets. I was going to share the link for the bone mets thread, but I see you already found it. I'm sure you'll find knowledgeable and supportive people there.
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Thank you seeq. I understand and I don't mean to intrude. At this stage, I needed to hear/read positive attitudes and encouragement. I’m hoping to gain some knowledge from your experiences and live my life with a positive attitude like you guys.
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parakeet, congratulations!!!! So happy for your big new purchase! Love your kitten meme!
anx, sorry to learn of the mbc diagnosis. Please let us know of the pet scan results and what your treatment plan will be. It takes awhile to adjust, but it’s truly possible to move forward with living life fully. You can read Chicagoan’s inspirational post two pages back on what a different place she’s at six years into this. It sounds cliche, but take some deep breaths and take things one day at a time.
seeq, as disappointing as it is, at least I move on from that line dance class having learned core steps, technique and dances that I had zero knowledge of before. The teacher has her own philosophy and I can’t expect her to change the class for my liking. I’m proud I can walk away knowing it’s no longer the right fit. I used to waste so much time staying in places (and relationships) when it was time to leave.
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anx789 - I'm sorry if I made you feel like you're intruding. I just wanted you to know there was another thread better suited for your questions. Once you get your feet back under you, I'm sure you'll have you're own "life does not end" stories to share. I'm looking fotward to hearing them. If you have time, check out Mel's Living Room - that's what we affectionately call the My Husband My Life, My Love, My Cancer thread (you'll see it in Active Topics). We are a bunch of ladies who talk about everything under the sun, from the mundane, to the life-changing, sharing good news and hard news alike.
DivineMrsM- I'm glad you feel like it was an overall good experience, and have other opportunities to move on to.
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Congrats parakeets 🎉
I recently sold my first house but I remember what a big deal it was, exhausting and exciting and totally worth it.
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parakeets: Yay on your first home purchase. I was an army brat so my parents never had a permanent home, then I moved to Vancouver at 18 and was renter for 26 years. I can remember the relief of never having to worry about a landlord again. I was always a good tenant but I had some awful landlords. It is a very humble, small, old house but it is MINE!!! (and my DH's) I can say I own 33' x 122' of the planet. Yes, my house is not much but if I was a poor person in a developing country my little house would be seen as a palace. I am a lucky person.
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exbrnxgirl, I just discovered this thread and your post from 2014. I got my stage 4 diagnosis earlier this week. Reading that post was so uplifting. I don’t feel any different than I did 3 days ago, I just now know why my shoulder hurts on and off. Thank you
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believe60,
I’m glad this thread has helped especially during the early days of an mbc diagnosis. MBC is still a pretty crappy dx for most of us but the course of our disease seems be be unpredictable. I just passed the 11 year mark with no progression since initial tx and have been fortunate enough to live an almost normal life. This is hardly true of most, but folks are often surprised by periods of near normalcy . While no one can predict the course of each person’s disease and while we still don’t have a cure, I remain hopeful. Take care.
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believe60: this thread kept me from falling over the edge. I thought I might live another year. Here I am at year 3. Pop into Mel's living room (My Husband, My LIfe......)
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elderberry: I second your praise for this thread. I have read and re-read all of the posts since my MBC diagnosis this past May and found such hope and comfort. I am very grateful to all who have shared their stories and now that the moderators have worked out the technical difficulties that prevented me from officially joining, I can finally stop lurking and express that gratitude to all of you. I regret that I was not here in time to thank Moth and BevJen and the other courageous women who were so generous with their knowledge and compassion before they passed. This is my first post so please correct me if I am posting in the wrong place.
I made a real effort to fill out my profile correctly and completely, but found difficulty with some of the sections, so thought I would give it in a narrative in case my experience with any part of this might be helpful to someone else.
Diagnosed in November 2019. Lumpectomy in December 2019. Clear lymph nodes. Whole breast radiation January/February 2020. Anastrazole and Fosamax. In March, 2022, I complained to MO about persistent muscle pain. Blood tests showed CEA of 33 and elevated calcium. Bone scan found increased uptake on the right iliac bone and the clivus. CT scans of head, chest, abdomen and pelvis were clear other than a 3 cm lesion on the right iliac bone and an 8x12 mm lesion on the clivus. MO was not comfortable with radiation and wanted to start Kisqali immediately and "wait and see". I had learned from the contributors on this forum that not only was radiation possible, it was also successful. I also learned from all of you to stand up for myself. I had a number of increasingly tense conversations with the MO until she agreed to take my case to the tumor board. Every radiologist on the board that day insisted that radiation was the best course. In late June I had 5 rounds of SBRT to the pelvis and the clivus. The SEs of the skull radiation and the steroids to treat the inflammation were a little challenging, but I would do it again in a heartbeat. At the end of July I began 600 mg of Kisqali which resulted in such severe gastrointestinal issues that I stopped for 10 days and then began again on 400 mg. Still have some gastro issues, but at a lower intensity. I know from my reading here that if I can stick with it, the SEs may improve over time. I have a chest, abdomen and pelvis CT scan and a bone scan scheduled for Monday and a brain MRI scheduled for Tuesday to determine if there has been progression.
Not sure I would have made it through the last 5 months without all of you. Bless you for being who you are.
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eleanora,
So glad that this thread has been helpful. Since the change to this website the diagnosis/signature line has been a bit difficult. My signature line is very bare bones though I have completely filled out my profile. I just can’t get it to appear. Good luck with your upcoming scans and pop by this thread to tell us about the “normal” things in your life. Take care
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exbrnxgrl: Thank you for the kind words. My apologies for not thanking you for creating this thread. It has been very helpful for me. Glad to know that I'm not the only one having problems with the diagnosis section. I noticed that mine states that I have Brain mets, which I do not. I have two bone mets - one in the pelvis and one in the clivus, which is a skull bone. I've looked at my account and don't see any place to fix that.
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Eleanora, I just tried to update my treatments and said "forget it" too much of a mess at this point.
Congrats, Parakeets! I love that cat and your cookies line LOL.
Anx and Believe 60- I look forward to reading about what you've got going on once you get a treatment plan in place. Things should get better after that mentally. Just have to figure out how to handle side effects from treatment, these boards and your care team will help.
Exbrnxgirl- yay for teaching! My mom is retired kindergarten. Bless y'all! She was subbing but stopped because of her plantar fasciitis. She is still busy with this and that though.
I haven't done much the last couple of months. Transitioned to LTD so been working on the budget, lots of couponing and cooking, eating in. Now that weather is finally cooling off,going out to eat a bit outdoors. I should be getting out more now!
It's been too hot to walk much, and now I've got mystery pain in a foot-need to figure that out.
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I can’t thank all of you enough for sharing your stories and feelings about an MBC dx. I am four days in to coming to terms with it. Because I am not really in any pain (shoulder often doesn’t hurt at all) it seems so surreal right now. Like somebody must have made a mistake. But I know that isn’t so. I quickly put together a packet of all my BC history and just walked it into a well known cancer center not far from me. (I live just outside Washington DC). I need a second opinion to know I am doing all I can. They will contact me next week. In the meantime I meet with radiology on Wednesday. My MO has proposed a clinical trial. I would get the standard Ibrance and letrozole or the study drug, ibrance and giredestiant. It’s a phase III trial.
I am curious, how did you help your loved ones also deal with it? My grown daughters are just so upset it breaks my heart. I know my sons are worried too.The MBC club is obviously one I never hoped to join, but I am thankful to have you all to be on this path with.
Nanc
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I answer their questions and that's pretty much it. They have to deal with it on their own in their own way. They can use each other for support, not me.0
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Believe60 - Welcome, although we all wish you didn't have to be here. I told my kids what my first doc told me, "Think in terms of years, not months" and that I'm okay until I'm not okay. It was hard in the beginning, because of the pandemic I had to tell them by phone. I was in Florida, my daughter was in California, my son was about to deploy (Army), and travel just want happening. By now, they've seen me, and they can see I'm doing all right, mentally and physically - I think that helps the most.
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Thank you everybody for the house excitement! I'm excited but some of my family seems less excited if not not excited at all, and that totally caught me off guard and burst my bubble a little. It will be so nice to have my OWN place. Nobody can tell me not to paint anything purple and if anybody says anything about "resale value" it's going in one ear and out the other. Ha!
*not my house...but putting this in the idea file. Lol
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parakeets, resale value is pointless, unless you're a flipper (in my opinion.) I'm thrilled for you that you purchased your first home. That's a huge accomplishment! I don't really care what Zillow says my home is worth. I'm not selling it and it doesn't change how much I love my home.
Go for the purple!
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Oooooo I love that color. Do whatever you want it’s your choice not theirs. They can paint theirs boring white with black trim.
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parakeets: If I was lucky enough to own a Queen Anne style house I would go crazy on colour. That architecture can handle it and it suits them. I have a purple door and canvassers and other door knockers,who are always young, always say they love the purple door. They also love my mechanical door bell (bring, bring) - I have a plaque that says PLEASE RING BELL and there's the little key next to it. It is like a really loud bicycle bell. That generation probably has never seen or heard one. The 1920's original clapped out and I had to do research to find a reproduction. The plaque I found in Ireland. Some people go nuts on the ringing when they hear it and I have to yell at the top of my lungs "Coming!! but I think they do it repeatedly because for them it is fun.
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Parakeets Rule - congratulations, so fantastic that you bought a home! You will love making it your own. Don't listen to anyone who is negative about your purchase. I had to make make a pinterest board private because a co-worker kept giving me unrequested and unappreciated "advice" on my pinterest "idea board" for a project home I was working on . Do what you want to it, it is YOURS!
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Parakeetsrule: tune them out!! I get "why are you spending so much on the basement when you know the house will be bulldozed when you leave?" Yes, it will be but I will have a few years (I hope!) of real enjoyment from the renos instead of dreading going down there. It was a dungeon and now it becoming almost light and airy. Almost done. The sale of the dirt my house sits on will cover the renos and still leave me and my DH with some money in our jeans.
aprilgirl11: I have so many Pinterest boards. What a great place to forage for ideas. I guess you can't just say to your co-worker "Thank you but your ideas suck" :-)
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Parakeetsrule- we are in what we hope to be our forever home. I don't care what anyone else thinks we should do with it; we're making it work for us. You bought it; you own it make it yours!
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Parakeet, is there a touch of envy from your relatives that you’ve bought a house? My siblings are like that. Don’t let it dampen your spirit, tho! Shake off their indifference and savor your accomplishment.
My house was such a fixer upper when I moved in with dh years ago that over the years, we’ve done most of the home remodeling projects you can think of. Some of it was basic: insulation, new doors and windows, upgrade electric, ect. But there’s so much to be said for having had an outlet for my creative side with paint, floors, floor plans and home decor. The creative part of me does not want to be denied! A house provides many opportunities for imagination and originality.
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parakeetsrule - CONGRATS!!!!
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Kikomoon:
I was finally able to correct my diagnosis to show bone mets only, but it took several private messages back and forth with the moderators. They were very helpful.
Eleanora
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thanks everyone! 0
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eleanora,
I have given up on my dx line. It’s still missing dates and treatments. I simply don’t want to waste anymore time on it. I’m enjoying my first week in fifth grade but I definitely need to build up my stamina so I can make it through the month 😂 . Despite that, I’m really enjoying it. My little dog, Pumpkin? She is not too thrilled.
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