How long have you been Stage IV?
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@livinglifenow Pam, Great news! Enjoy rehearsal!
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Good morning everyone! I was wondering after the first year how often do you see your oncologist? Does it stay at every month? I went for my appointment to see oncologist and everything was ok but I’ve been having some pain in my left leg(from hip to foot) mostly in my calf ( it’s hard to walk) I had a sonogram Thursday to check for blood clots and I don’t have any so the doctor wants me to get my PET scan early ( was due for one in September) but am now going on July 31st to make sure it hasn’t spread. I really don’t believe that it has but would rather be safe than sorry. Hope you all have great day. I hope that everyone who had PET scans and doctors appointments had good results!
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@ssales13 I met monthly with the oncology office for two years. Now I am just going to have monthly blood draws and see my oncologist after 3-4 month scans. I think they might also see me before my Zometa injection. Not sure. I have to have a colonoscopy because of some kind of colonic thickening which is very unlikely to be cancer, but oh hurray another scan to worry about, right?
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@tougholdcrow thanks for the info! I hope your colonoscopy goes well. Yeah hurray for scans! I’m thankful we have this site to ask questions and encourage each other. Hope you have a great day.
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@ssales13 Glad to hear your MO appointment went well. As for how often I see my MO… Since I have HER2 positive BC, I go for infusions every 3 weeks and have blood work too, then see my MO or the oncology nurse at that time as well. And, as of right now, I am having scans every 3 months. So I imagine it depends most on what kind of treatment you are on.
As for the pain in your leg (especially calf), I hope it's just some kind of herniated disc and/or pinched nerve. To determine if that is the case, you would need a lumbar MRI. I had a severe herniated disc in 2022 and it took months for the doctors to finally get the lumbar MRI and determine what the problem was. I also had pain from my hip down to my toes and even some issues with my calf, so I hope it is something more in line with that. Although the pain can sure be immense!
It will be good to get some answers. Keeping you in my thoughts and prayers.
Hugs,
Pam 💗
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I now see my oncologist every three months. My cancer is stable for now
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@ssales13 I hope your PET/CT turns out well and it would be something else relatively small.
I'm on the second half of my second year (diagnosed Jan. 2024), and I see my doctor every 3 months. I do monthly blood work and send it to him over email and he confirms. I live in a different city than the clinic (6h away by car) so at the beginning, if something needed troubleshooting with meds, we would do it over the phone. I'm very lucky to have him as he is very flexible, accommodating and understanding.
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Hi all! @ssales13 I think you and I were diagnosed around same time. At this point, 7 months in, I see him or one of his fellows monthly with blood tests each time. Tomorrow I am seeing him mid-month to review my first PET since diagnosis. The report is in my portal since Thursday but DH and I decided not to look at it and instead go away for the weekend. Had a fun weekend! May read it tonight or tomorrow morning. Needless to say, I’m nervous.
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@EddieJ Praying your PET report is good! I am thinking of you and glad that you and DH got a chance for a lovely weekend getaway.
Hugs, Pam 💗1 -
@livinglifenow , @AJ , @radiation_cinderella , @EddieJ , thanks for responding ladies! I really appreciate you all. I guess it depends on the treatment you are getting like @livinglifenow Pam said. @EddieJ praying your test results are great! I will let you ladies know when I get the results. Hope you all have a great day! You too @tougholdcrow !
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Hi all! I am thrilled to let you know that my PET scan showed wonderful results! Everything is significantly better and some things are even resolved! I didn’t think there could be such a difference considering how sick I was in January. I was wrong! 🥳
I am so happy that the results were great because I have been feeling really good. Thank god they seem to go hand in hand!
Thank you all for your caring thoughts and prayers - they all worked ♥️ @ssales13 Stacey - hoping you get good results too!I’m away for the rest of this week - will be celebrating with friends and family. Hope you all have a good week and fun happy weekend 🌞🌞
juliana xo6 -
@EddieJ-Great news! Enjoy celebrating.
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@EddieJ Juliana, I am thrilled for you as well! And, so glad you are feeling good. Enjoy your time celebrating with friends and family!
Hugs, Pam 💗1 -
@tougholdcrow @ssales13 @emiliamarty @EddieJ @chicagoan @radiation_cinderella
I just wanted to let everyone know that I just got the results of my July Signatera test—negative! I am hoping this means that the 2.8 SUV on my PET scan, done the day before the Signatera test, is post-radiation inflammation and/or bone remodeling. Seems logical to me.Now just hoping the switch from Anastrozole to Exemestane makes me feel a bit less "blucky." 😜 Just started it a week ago, so it may take a while for the Anastrozole to clear my system.
Hope everyone had a great weekend and is enjoying this lovely day!
Hugs, Pam 💗
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@livinglifenow Pam-Thanks for sharing that great news!
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@livinglifenow Hi Pam! What wonderful news!! So happy for you! Now really enjoy the rest of the summer 🌞🌹💐🌺🌷🌻♥️
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@livinglifenow Pam, Great news! So happy for you !
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@livinglifenow Gosh, this is great!
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So happy for you. Thanks for sharing.
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@livinglifenow Thanks for sharing the happy news :)) congratulations on the good results <3
I also just did my bi-annual PET/CT and I'm still doing well, NED :))) very happy! Taking my faslodex shot on Sunday and starting my 20th Kisqali cycle on Monday, then xgeva a few days afterwards.
I wish you all a lovely day xx
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@radiation_cinderella Congratulations! It sounds like your treatment is treating you well. So glad to hear you are NED. It’s a great feeling, isn’t it? And I am truly thrilled when I hear that others are having good results. It gives all of us hope.
Have a fantastic day!Hugs, Pam 💗
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Hey Ladies! Hope you all are having a wonderful day. @radiation_cinderella so happy that your NED! I thought I’d let you all know that I had my PET scan this past Thursday. I don’t see my doc until the 18 th I believe but pretty sure I’ll see her before then. I looked at my PET and it shows progression. Looks like it is in my skin in the breast and also 2 nodules in the left breast ( where my main tumor is) so I’m pretty sure I’m probably gonna need a biopsy and go to different meds. I’m trying to be positive. I was hoping that my medication would last more than the 5 months I was on Kisqali. I’ll let you all know when I know more. Thanks for listening.
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Hi @ssales13 I'm really sorry to hear about the progression that showed in your PET scan, it must be very difficult ❤️ I pray your doctor will be able to switch you to another protocol that we tackle the progression and contain it fast. Let us know when you hear from her ❤️
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@radiation_cinderella thank you for your kind words.I will let you all know.
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@ssales13 Oh, Stacy, so sorry that there appears to be progression. There are a lot more treatments out there. Praying they find a great fit for you. Thinking and praying 🙏 for you.
Hugs, Pam 💗1 -
@ssales13 Another thought: you may try calling your doctor’s office to ask if they can discuss it with you ASAP. I did that when I saw a new lesion appear on my PET scan. My doctor called me later that day and we set up a session with the radiologist the next day, since they decided I needed radiation. I didn’t have to wait until my next appointment. Sometimes the doctors don’t even look at the scans until your appointment day. I don’t know if that’s the case with you, but it wouldn’t hurt to give them a call and ask if they can call you to discuss it. Hope everything works out great! Prayers and hugs.
Pam 💗
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@livinglifenow Pam, thank you for your kind words and prayers.I appreciate them. I left a message for my doctor to call me about the results.Im really nervous.I pray that I find a medication that works for me.
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@ssales13 Stacey, I agree with Pam @livinglifenow. Ask to meet with your MO asap. He/She can better explain what you are seeing and you can learn how they intend to address it; rather than waiting and wondering. More knowledge can sometimes help keep anxiety and fear at bay.
Keeping good thoughts and sending virtual hugs! juliana xo1
