How long have you been Stage IV?
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@livinglifenow Have a great camping trip Pam! Hope the weather holds and Mother Nature gets your energy level to rise!
It was a beautiful Mother’s Day here … hope you all had a day of love ❤️
The wedding was gorgeous but I was not moved by the music selection so didn’t dance much. I was so disappointed.
Onto the gala with Sting on Tues - let you know how that goes later this week.@ssales13 good luck with your pet scan this week!! I’m seeing my Onc tomorrow and will find out when my next scan is. I thought we would be having them close together but my Kisqali vacations nixed that. I will be thinking of you and praying for good or stable news!
Ttfn all! juliana xo1 -
@ssales13 Good morning, Stacy! Just checking in to see how your scan and MO appointments went. 🤞 Thinking of you! 🥰
Hugs, Pam 💗
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@lafish Just checking in to see how you and Hershel are doing. It seems everyone is getting busier with late spring and early summer weather getting us all out and about. Hope all is well with you!
Hugs, Pam💗
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Hi there @livinglifenow Herschel and I are getting out in this lovely spring weather, I have to say I’m not missing the muddy puppy paws that we had with the snow melting. All is good, well mostly good lol! I had some issues with my Pleurex drains falling out and had to be removed a little earlier than planned but everything is fine now with no drains, I’m very happy to be rid of them finally.
My scans came back with good news, no new lesions, 2 liver lesions decreased in size again, thanks to Kisqali I’m sure. Such an amazing drug!
Hope all is going well with you and everyone else.
Big hugs Lafish
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@lafish I know what you mean about the "muddy puppy paws." I do not miss that either. My dog and I just spent some quality time outside today. It is perfect weather right now. Glad your Pleurex drains are finally out, though the process to get there was quite a pain, I imagine.
So thankful your scans all showed good results. No scans for me until July (chance for inflammation from radiation to go down and not get false reading).
My DH and dog and I finally went on our first camping trip of the season. (Had to cancel first two due to radiation schedule). We had lovely weather. Our daughter and her husband visited us one day and our neighbors visited us the next. Company at the campground! It was so nice to get away for a while.
Best to all.
Hugs, Pam 💗
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Hi @livinglifenow Pam, I seen my mo today and we went over my PET results. She said they were great. I had resolution in the breast mass , left axillary lymph nodes and lytic osseous lesions on my back (2)The sternal lesion is now 0.7, previously was 1.7. And the T6 right posterior elements is 0.6 , previously 4.1 and no new lesions. @lafish Im so happy that you had a good scan too! @EddieJ and @livinglifenow I hope your scans are good as well. I will be praying.
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@ssales13 Awesome! That is such great news. I am so excited for you. Now go do something fun to celebrate! 🎉
Hugs, Pam 💗
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@lafish Such great news!! No drains! I felt so free when I got my out! Never again for both of us!! 💪💪.
@ssales13 Stacey - Congratulations on great scans!! I am so happy for you! Sending you a virtual hug! ♥️
My scans are not till mid-July… just pray I can stay on Kisqali till then to get full effect.When I saw these posts I was so thrilled for you both. Hope the good news is catchy!
Here is a picture of Sting from the Breast Cancer Research Fund gala… it was really fun.
My girls weekend in Shelter Island with my BFFs was great! @tougholdcrow We hit Wades beach, a creek park and the Stern Preserve beach. Got great sandwiches at the Eccentric Bagel and wonderful dinner at Salt. My friends and I thank you so much for your info and recs!Ciao for now! juliana xo
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@livinglifenow Pam, Thank you! I will definitely be celebrating ! We finally got our pool up and running and still doing stuff in the yard and it’s been rainy and cloudy for the last several days with more to come. I can’t wait for it to warm up and for the sun to shine! @EddieJ Juliana, Great pic of Sting. So glad you enjoyed your trip with your BFF’s. I’ll be praying for amazing scans for you in mid July and that you are able to stay on the kisqali. I hope you ladies have a wonderful day!❤️
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@EddieJ Wade's beach is our go-to beach while we're on the island. Salt is a big favorite. Glad you and your friends enjoyed it as we do. Still a few weeks until we escape the heat on the island ourselves. I'm feeling a bit under the weather, so this cheered me up.
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@tougholdcrow Hope you are feeling better very quickly! At the least, you have something to look forward to that makes you very happy.
Sending hugs for health 🌞🌻🌼🌸🌺🌹🌷🍀😎Thanks @ssales13 for the good scan prayers! I’ll take all the prayers I can get! 😘
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Hi everyone,
I hope you're all are able to find pockets to joy in your days <3
I want to ask those of you who got diagnosed with stage IV at a young age (under 40), if and when you were stable, how does it feel? Last October my oncologist told me I'm basically off the hook and I should go live my life, and two weeks ago I did the final procedure he advised (removing my ovaries and tubes, and losing zoladex shots forever!), so now I feel "so now what?". I'm grateful that I'm stable on my current protocol with NED and the symptoms are tolerable, but I feel like my mind is still on a survival mode of when I found out I had bone metastasis.
I'm turning 40 this year and I got myself into a mission of finding a way to get my medication cheaper (I'm paying a lot of money here in Egypt as my insurance doesn't cover most of the things), but I don't want to be thinking of cancer all the time. I know it's normal, but I would like to see if there are other gals who can share with me how it felt as the years continued to pass and things were/are somehow stable…I know that some people are on my combo and continue to be for over 5 years (kisqali + faslodex + xgeva) and I would love to hear from you. I'm able to plan happy moments, travel, and work but I'm also super obsessed with financial planning for my medication because I'm on a short term work contract.
Thank you for listening <3
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@radiation_cinderella So sorry to hear you were diagnosed with Stage IV so young. You are my daughter’s age, so I can’t comment on MBC prior to age 40. The first time I was diagnosed, Stage I at age 48, I was working full time. That helped a bit with keeping my mind off BC for short spurts of time. Of course, it took years to not think of it every day.
My MBC diagnosis was one year ago this month. You can see in my signature what treatments I have had in the last year. I do think of MBC most every day again, but try to keep busy. I’m retired now.
It sounds like you are in a very good place with your treatment (except for the financial worries). All I can suggest is to keep busy, enjoy life, and be thankful for that beautiful butterfly that keeps visiting your flowers every day. 🦋 💐Hugs, Pam 💗
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@radiation_cinderella Im so sorry you were diagnosed stage 4 at such a young age! I was diagnosed MBC just last November and I’m 54 so I can’t really comment on being MBC before 40 but as @livinglifenow says I also stay busy as much as I can and I do work part time. It sounds like you’re doing well and I’m happy that you are NED! I hope that you are able to get some sort of help with your financial worries for your medication. I’ll be praying for you.
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Thank you @livinglifenow & @ssales13 for your kind responses, the prayers and hugs, it means a lot to me that you took the time to read and respond ❤️ I think we're close in terms of the novelty of stage IV diagnosis, and I hope we always be safe and find joyful moment as long as we live 💓
I'm keeping busy and it helps for sure, but I don't know if I'm able to imagine life beyond a year or two…and it's a very strange place to be when everyone I know, my age, is in the phase of building their life…I'm on the other hand, my days are basically revolving around saving mine.
I was first diagnosed with stage II at 34 years old, less than a year after my father diagnosis with stage IV lung cancer. He died after 13 months of his own diagnosis. So 5 years of my 30s were/still about finding ways so I don't die. The treatments are making me feel+ look older, sluggish and mostly battling against induced menopause symptoms and fatigue. Everything revolves around trying to feel better…working out and food became tools to combat side effects rather than just enjoying myself, and I no longer remember how life was before I was hit with my first diagnosis. I never imagined my 30s to be this difficult and now that I'm turning 40 this year, it's also difficult to think about how and when I'll get used to this - hence why I'm asking if there are women here who might feel the same but been on this journey longer than me. I feel almost deprived of my youth, if that make sense.
Thank you again, sending you much love 💞
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@radiation_cinderella Im so sorry about your dad! I talked to a girl online that lives in my state she is 29 years old and was diagnosed with MBC and has a 2 year old daughter. My heart really just breaks to hear of women going through this at such a young age or any age for that matter. I was diagnosed with Hodgkin’s lymphoma at age 38 and my daughter was 11 at the time. I’m thankful that I got 16 years of being cancer free before my stage 4 diagnosis. I try to take 1 day at a time. I pray and try to eat healthy and I try to enjoy the beautiful weather and my family as much as possible. I hope the same for you! It really helps being on this site and talking to other people that are going through the same thing you are. Keep posting. Also you might want to check around on here on other threads I think I saw some that were for younger women. I’ll be praying for you.
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@radiation_cinderella Just FYI: If you haven't tried the Zoom meet-ups, there is one for younger people, which meets on Thursdays. See link below to register.
I have attended some of the other Zoom meet-ups for MBC. It might be helpful for you to get a chance to meet real women in your same situation. They would be most likely to have pertinent advice for your situation. Best of luck to you!
Younger With MBC, register here:
Hugs, Pam 💗
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@radiation_cinderella I found this podcast reassuring when I was first diagnosed stage four. This woman has survived for something like 25 years.
https://podcasts.apple.com/us/podcast/im-still-here-lessons-from-life-with-metastatic-breast/id1629136639
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Thank you so much @ssales13 @livinglifenow @AJ ❤️
It is heartbreaking for sure, for anyone of any age to be dealing with cancer. I lost 3 family members to different kinds of cancer and it's never easy on anyone…
I'm attending the young with MBC virtual meetup, but most of the people are around the same stage of the treatment, still early on. With the exception of one person who was there last time celebrating soon her 5 years mark 🤩 I will keep looking for people…
I will also listen to the podcast 💓
Have a beautiful week and thanks again for taking the time to respond to my messages 💞
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@AJ @radiation_cinderella Hi ladies! I also have listened or read the transcripts to the podcast I’m Still Here… I recommend it for our Cinderella too. I was diagnosed in Jan of this year at stage 4, no family history or mammogram indication or lumps. However, I am 65 this year and retired after 40 years of full time corporate madness. I so feel for you Cinderella, as I cannot imagine dealing with this monster while young with work and children. Please know I am sending hugs of strength, resilience and calm. On your side and cheering from the bleachers!!
Take care, stay cool! juliana xo3 -
Hello everyone, this is my occasional reminder that there are over 120 active participants on this site alone who have lived over 5 years, many over 7 and quite a few over 10, a couple over 20. All ages, with all kinds of Stage IV breast cancer. Many of these folks began treatment before the flashy new drugs, like the CDK inhibitors, came out. As I often think, I didn't know my expiration date before this diagnosis, and I don't know it now.
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@tougholdcrow Thank you! I really needed to hear this today. Kind of a down day for me. Tomorrow will be better I’m sure. Hope all of you ladies have a great day.❤️
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@ssales13 Sending lots of hugs 🤗 your way. I am not a fan of the “down days,” either. I think we all get them once in a while. I had a very “up day” today, for which I am very thankful. Will be praying for you to have an “up day” tomorrow!
Hugs, Pam 💗
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Thanks so much for the reminder. I really needed it today. I have been Stage IV for 3 years, still on my first line. Nervous because my blood test results from yesterday showed a .1 increase in CEA. While I know that tumor markers don't correlate for everyone, CEA has been eerily accurate for me.
I am hoping that the increased stress I've been under in other parts of my life is causing the uptick. In addition to vision problems I've struggled with for the past 6 months, my son has recently announced that he has been chosen for a prestigious 2 year overseas posting to begin next summer. While I am thrilled for him, it means that his family, including my baby granddaughter, will be gone from the time she is 2 and 1/2 until she is 4 and 1/2. I am so sad that if I die before they return, she won't remember me.
I realize that there are many on this board who have had and continue to have, problems much greater than mine, but it makes me feel a little better to be able to share.
Hugs and healing thoughts to all,
Eleanora
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@livinglifenow Pam, thanks for the hugs and prayers! Yes today is a much better day! So glad you had an “up” day yesterday! I love them days and pray that we all see them a lot. @Elenora I hope the small uptick is nothing but I do understand the worry. 3 years on the same medication is great to hear. I hope you get many more years with it. So sorry to hear about your son and his family moving away and i understand how you feel about not seeing your granddaughter. Sending lots of hugs your way. I hope you ladies have a great weekend. Praying for everyone ❤️
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@eleanora As @ssales13 said, I hope the slight uptick in your numbers is nothing. Family is such a comfort. Hopefully you can have lots of FaceTime or Zoom chats with your son and granddaughter while they are overseas.
@ssales13 I am so pleased to hear that today is a better day for you!
Wishing everyone a wonderful weekend!Hugs, Pam 💗
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Thanks for the kind responses. My MO sees no need for a treatment change or to move up my next appointment, which is scheduled for August, so that is encouraging.
Hope everyone has a lovely weekend.
Eleanora
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