How long have you been Stage IV?
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@jensgotthis 10 years! That’s wonderful. Enjoy your champagne and praying for you for another 10.
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@jensgotthis Jen, you got this!
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Hey Jen!! Congratulations, what a ride!!! And may it keep on being such remarkably smooth sailing…
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Many stage IV breast cancer patients do well for years, even decades. Does anyone wonder why there isn't more research into this? It would be so interesting to know how much of this is due to new medications or how much is due to other reasons. I know this is very optimistic, but I think in the not-too-distant future, certain Stage IV breast cancer patients will have very long control, even lifelong control, depending on the age the person is diagnosed. The thing is, though, even with very good control, it's not the same as not having cancer.
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I don't know if I posted this before, but my oncologists told me that with the treatments available today, some older patients diagnosed with stage IV breast cancer will probably die of something else; that's not to underestimate the challenges of being on constant treatment and its overall effects on the patient's health.
I think it's important to be optimistic and realistic; it's one of the things I like about my oncologists, they are optimistic and realistic.
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@sunnidays There has been recent research interest in "exceptional responders." What I hope is that the response will not be so "exceptional" with the new treatments available and that the research will find its way to a cure. Cheers!
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@jensgotthis Go Jen Go! So thrilled for you!
Hi all! Seconding @tougholdcrow note above, may the exceptional become the new normal! 🤞🙏
Have a great Tuesday! juliana2 -
Hey, @eddiej and @tougholdcrow !
Hope all is well with you and everyone else on this thread. I can’t believe 🦃 day is just around the corner.
So far I’ve been responding very well to treatment. I think both of my oncologists were expecting progression on my last PET scan, but everything was great and my Signatera test was negative, as well. I don’t know that I’m “exceptional,” but would love to be so someday!@jensgotthis Congrats! So happy for you!
Everyone have a great week!
Hugs, Pam 💗
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Love your oncologists' attitude. I was originally diagnosed at 69, then stage IV with bone mets at 72, currently on Kisquali as my first line treatment. I am now 75 and have had a few doctors ask what my treatment goal is - I always tell them that I want to live long enough so that something other than cancer kills me!
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@jensgotthis wow! 10 years is so great! Congratulations!
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@livinglifenow @ssales13 @tougholdcrow @eleanora @jensgotthis and everyone one else:
Sending wishes to all for a fun, happy, healthy, comfortable Thanksgiving holiday!
Laugh a lot, eat a lot and love a lot!Enjoy! juliana xoxo ♥️🥳💃🕺
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@eddiej Thank you .Happy Thanksgiving to you as well as @livinglifenow , @tougholdcrow , @eleanora , @aj and everyone! I hope you all have a fantastic day!
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I have been cooking for several days now. This is serious! Happy holiday and much love to everyone!
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I been have been cooking and baking since yesterday. Hope all of you have a wonderful holiday.
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Happy 🦃 day, everyone! Enjoy all the delicious food, and family and friends!
Hugs, Pam 💗2 -
I am having first PET scan Thursday as MRI shows it has spread to lower back and sacrum after me being in remission for years. Very scared. What should I expect from PET scan. I have never had one. Thank you.
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@xsuzx I had PET scans at the beginning of this journey. I'm not too claustrophic, although it is weird getting injected with the radioactive tracer and going through the tube. I focus on my breath to get through these things. The staff will probably give you warm blankets, which always felt comforting to me, especially since it's rather chilly in these equipment rooms.
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@xsuzx I have had 5 PET scans in the past 18 months—so am very familiar with them. Here is what I can tell you:
The day before your PET scan you are instructed to eat a very low carb diet to lower your glucose. This makes for a more accurate result with the radioactive tracer.
Also the day before they ask that you limit your activities to only necessary walking, etc. This also helps make for a more accurate scan.No eating, only water to stay hydrated, 4-6 hours prior to scan. Your imaging center should go over all of this a few days before your scan.
Wear clothing with no zippers, buttons, etc. I just wear leggings and a long-sleeved t-shirt.
As @tougholdcrow said, it is cold in the room, so I usually throw on a sweater as well. They do provide warm blankets, too.
After checking in to the imaging center at the hospital, someone takes me back to access a vein for the tracer. Sometimes they also do a blood draw for labs ordered by my oncologist.
In my case, after prepping my vein, they take me to the portable PET scan unit, which is located outside the hospital. I sit in a comfy chair and they give me the radioactive tracer injection. Then I sit there quietly for 40 minutes approximately.
Next, I ly down on the scanner bed. I get more warm blankets! I believe the scan takes about 20-30 minutes.
Then, I’m done!
Hope all goes well for you! I am thinking of you and sending good vibes your way!
Hugs, Pam 💗0 -
Thank you Pam and tough old crow (is that what I should call you?) You seen too nice for that name🤣. I’m a newbie because all I had to do when I was first diagnosed was take a pill. Psych ing myself up for this. Will be happy to see exactly what is going on…..and hoping I can get better pain meds tomorrow. Thank you for your patience with all my questions 🫶
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Hi @xsuzx Happy to meet you tho wish we didn’t meet here. I am a kind of newbie, just diagnosed in Jan for stage 4 so not quite a year in yet. However, I have had 4 PET scans in the past year so feel rather experienced with them. I now get one every 3 months along with blood labs and an Xgeva shot. I find the procedure itself a non- event and hope you can too.
@livinglifenowPam explained it succinctly - thanks Pam!! I don’t wear any metal and wear a sports bra so I do not have to get undressed. I bring my iPad and read while I wait for the tracer to run through my system. They wrap me up in warm blankets so I don’t get too cold and it’s over pretty fast. I am not claustrophobic; it’s open on either end so hope you won’t feel it either. I’m lucky in that I get results within 24-48 hours. I always meet with my MO the next day or day after so don’t have to wait long to discuss the results.
Wishing you an easy time and only the best results! Hugs 🤗 juliana xoxo2 -
As @livinglifenow said,
she explained the PET scan procedure very thoroughly.
As for me, I have done this scan nine times so far, and I personally find it much easier than an MRI.
I don’t live in the US, but the procedure here is almost the same, except they give me hospital clothing instead of using my own. The most important thing is to avoid any metal on your clothes, hair ties, or even an eye mask you might wear.
They also ask me to go to the bathroom about 10 minutes before the scan to empty my bladder so it appears more clearly in the images.
Other than that, the steps are almost identical.
After the scan, you should drink plenty of water to flush out any remaining radioactive tracer from your body.
I wish you all the best.🤗🧡🧡
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Thank you Norah and Juliana. I am anxious and hope whatever they find that they can get this pain under control. This is such a great community.
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Isn’t this group of BCO (Breast Cancer.Org) members wonderful?!
I have learned so much from everyone on this thread and am so thankful for their wonderful advice, encouraging words, and kind thoughts.Have a great week, all!
Hugs, Pam 💗
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Yes it is! You all are!❤️
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