How long have you been Stage IV?
Comments
-
@ssales13 I had a bilateral mastectomy 16 years ago, so will try to remember as best I can. One thing they should tell you is that they put 1-2 drains on each side of your chest. This is to drain excess fluids following surgery. They are left in for several days up to a week, I believe. It all depends on your fluid output.
I did find it very helpful to sleep propped up quite a bit, so get some comfortable pillows!
It also helps to have button-down shirts. Lifting things over your head for the first month is a bit challenging.
Your team should be giving you a list of exercises and stretches to do. I did mine probably twice as many times per day as suggested and got my muscles back to normal very quickly.
Just FYI: I didn’t have much “pain,” just a lot of pressure from the fluid buildup.
I’m sure other ladies will have varied input, as we all experience these things differently.
Praying your journey goes smoothly. Just know I am always thinking of you wishing you the best!
Hugs, Pam 💗😃2 -
@ssales13 Good morning Stacy! I can’t help here since I haven’t had a mastectomy but I did have a breast reduction 12 years ago and all the info the other gals have given about the drains is familiar. Also, I don’t remember pain as such, more annoyance from the drains.
Keeping good thoughts for you!! xojuliana2 -
@norah2024 , @livinglifenow @eddiej thank you ladies for your input and well wishes! I will definitely know next Tuesday if having the surgery is what the doctor suggests. I’ll let you all know something after I see the surgeon. Thanks again❤️
3 -
@norah2024 my CA 15-3 went from 38 in July to 63 in October. I’m going for another tumor marker test next week. CEA marker is normal. The Caris test is like the guardiant test. Just a different company
3 -
Thank you for your reply.
What is the second marker test you’re going to do? Is it CA 27-29?
I did that one too, and it was elevated. I also did the CEA test, and it was normal.
Thank you for clarifying about Caris test, because I was planning to ask my doctor if this test might solve the mystery regarding my condition and the type of treatment.
But since it’s the same test as guardiant , I’ve already done it before.
I hope everything goes well for you.2 -
@norah2024 , I get CA15-3 and CEA. The Caris test checks for ESRI, PIK-3, and all those.
2 -
Erstdiagnose vor 6,5 Jahren ER+PR+Her2 neg mit ausgedehnten Knochenmetastasen. Also sofort Stadium IV.
Knochenmetastasen.mit Zometa behandelt. Diese musste leider abgebrochen werden wegen einer Kiefernekrose .
Nach weiteren 3 Jahren Entfernung einer Nebenniere mit Metastasen.
Vor 3 Monaten erneute Metastasen in Eierstock, Leber und Bauchfell. Eierstöcke konnten entfernt werden. Jetzt Behandlung mit Fulvestrant (Spritze) und Truqap (Tablette).
Mir geht's aber trotzdem immer noch recht gut.
TRANSLATING FOR THE OTHERS:
Initial diagnosis 6.5 years ago: ER+PR+HER2 negative with extensive bone metastases. So, immediately stage IV.Bone metastases. Treated with Zometa. Unfortunately, this had to be discontinued due to osteonecrosis of the jaw.
After another 3 years, removal of an adrenal gland with metastases.
Three months ago, new metastases were found in the ovary, liver, and peritoneum. The ovaries were successfully removed. Now being treated with fulvestrant (injection) and Truqap (tablet).
Despite everything, I'm still doing quite well.
6 -
@acki05 Du hast wirklich schon unglaublich viel geschafft! Trotz der langen Behandlung und all der Herausforderungen klingt es toll, dass es dir immer noch recht gut geht – das zeigt, wie stark du bist 💗
Die Kombination aus Fulvestrant und Truqap ist ja eine moderne und vielversprechende Therapie. Viele berichten, dass sie gut damit zurechtkommen – und es ist super, dass du sie gut verträgst. Es klingt so, als würdest du dich trotz allem nicht unterkriegen lassen und weiter aktiv durchs Leben gehen.
Und wie du siehst, sind unsere Diskussionsforen auf Englisch — wir warten schon gespannt auf das Übersetzungsmodul! Aber einige von uns sprechen auch Deutsch (-:
0 -
@livinglifenow , @eddiej , @AJ , @tougholdcrow Hey ladies I went to my doctors appointment yesterday and she said my PET scan was ok and didn’t show any progression from the last one.. So she said I’m stable and that at the moment they would shelf the idea of surgery for right now and now I go every 8 weeks to see her or nurse practitioner and get my Xgeva shot and PET scan every 4 months. I’m thrilled and relieved. I hope everyone is doing ok. I’m always praying for everyone on here.❤️
4 -
Gosh, that is a relief, @ssales13 !
1 -
@ssales13 Great news!! So happy to hear this and pray it continues for years to come ♥️
I get my scans every 3 months and my Xgevaa shot was switched to every 3 months too after this recent positive scan. Sort of same protocol… we are not alone 🤗
it’s 5:16 in NY and dark outside… winter has arrived… all good! I love winter ❄️ .
Hope everyone is doing well! Stay cool! xox juliana2 -
@tougholdcrow , @eddiej Thank you ladies! @eddiej I’m in MD so not too far from you and yes it seems we do have the same sort of protocol! It’s nice to know. Have a great evening ❤️
1 -
@ssales13 Wow! That is excellent news, Stacy. So happy for you. Wishing many more great scans!
Hugs, Pam 💗
1 -
@livinglifenow thanks Pam!
0 -
@norah2024 thank you so much for your kind words! I appreciate the prayers❤️
2 -
I recently had both the liquid biopsy (blood draw) and tissue from tumor 2 years ago tested by Caris. Nothing new as 2 years ago tumor tissue was tested by Natera/Altera and no mutations pointing to other treatments. Signatera kept monitoring the ctDNA. Caris billed Medicare a whopping $27,000 but was only paid $9600 (boo-hoo). I was not happy that dr pushed for these tests.
2 -
@newfmamainoregon , wow. I hope you didn’t have to pay anything for that! I’m just getting the blood biopsy. Tissue testing three years ago showed no mutations. I guess my oncologist wants to see if any have developed. But I just got scans that showed great improvement. So my treatment appears to be working as it is .
3 -
New to this thread. But to answer the original question of this discussion, I was diagnosed with Stage IV in January 2025. I was diagnosed with Stage 1, Grade 3 breast cancer in July 2019, went through surgery, chemo then radiation, and spent the last 5 years on Tamoxifen. This Stage IV metastatic carcinoma is on my liver. Obviously, there is no way to know how long I had cancer before it was detected. So when I hear the whole 60 months life expectancy (with the therapy treatments I am on) it definitely freaks me out. I have been taking Kisqali and Exemestane for 8 months now, and my scans and cancer index tests are showing promising results.
3 -
@nwarren79 63.9 months is the median life expectancy on Kisqali, meaning that 50% of people live longer than 63.9 months. There has been a recent real-world trial of progression-free survival (cPFS meaning time to treatment failure of Kisqali) showing that the longer you make it on the drug, the greater the time to a treatment change. This is the Ribanna trial and shows: " the median cPFS was higher for all reference points: cPFS of 40.5 months (95% confidence interval 35.0-45.5 months) for patients who were progression-free 12 months, cPFS of 53.6 months (95% confidence interval 42.7-not reached months) for 24 months reference point, whereas for the 36 months reference point, the median cPFS was not reached." This is a very heartening study that also shows that after 2 years, the site of metastases (ie. liver) becomes much less significant. Of course the fact that 50% of us don't make it that long is immeasurably sad and we must find a cure. but, Live long and prosper!
8 -
@cskinner , thanks for the response. I got the results yesterday and there are no actionable mutations. Just one mutation that there’s nothing to do for. KMT2C is the mutation. My oncologist said that it’s not that common but doesn’t affect treatment choices. I’m continuing with Xeloda and Faslodex. My scans last week showed significant improvement. And no active cancer in my brain! Woo hoo!
5 -
@aj Awesome news about your good scans last week and your no active cancer in the brain!!
1 -
@aj I hope you get really great results with the new treatment. Sending positive vibes your way.
0 -
@tougholdcrow, no new treatment right now. Xeloda and Faslodex are working
4 -
I can hardly believe that December will mark my 10 years since dx. I’m getting champagne!
10
