De Novo Stage IV
Comments
-
jobbido,
How often will you be getting a Signatura test? My MO doesn't do tumor markers either, only scans. I'm going to ask her about the possibility of doing the Signatura test. I do notice the test doesn't have FDA approval yet (not sure this is accurate), but it is covered by Medicare.
0 -
Weninwi so far I’ve had 3 tests done 3 weeks apart each time. I’m not sure if it would become less frequent if / when I get stable but yes it’s covered for me as well! Hopefully that’s something your MO would consider doing.
0 -
jobbio, your test results sound very promising; hope your scans confirm the treatment is working well!
0 -
Thank you for the welcome, Kris, @denny123, Bobbi Jo, Saulius. I haven't been on the site for ages and then I saw the topic and just jumped straight in. Now that I have read some of your stories, I feel much humbled. You've all been through so much and you're so kind and so positive. I was feeling sorry for myself, CA-125 markers rising to 60s, scanxiety since 20th (still waiting results). I've been lucky, glad to be still here!
Bobbi Jo, I was delighted to hear that your Signatera test results are so promising. Although I googled it, I wasn't clear if it worked only for people at the beginning of their treatment and/or immunotherapy treatment but not for those who are already receiving treatment or who are on hormonal treatment. It isn't available here yet afaik. I daren't ask my onc anything - his nickname is JC (short for J**** C*****) he is an excellent scientist, very knowledgeable but very overworked and rather unapproachable!
1 -
@aoibheann I hope you get good results from your latest scan, keeping my fingers crossed for you!
From my understanding it should work similar to a CA-125 marker where if it goes up regardless of how far along you are in treatment it could be a sign of progression. The difference is it looks for your tumor DNA specifically. They had to send a sample of my tumor initially for them to then look for how much of that is circulating in my blood going forward. However I’m very new to this all and haven’t asked many specifics on it so not sure if I’m explaining it exactly right haha
0 -
Thanks, Bobbi Jo, you explained that very well. Hope are you doing ok x
0 -
Thank you aoibheann!
Just went over the results of my first scans since starting treatment and everything is looking good so far thankfully! All tumors are shrinking, bone shows healing, a clear brain MRI and my signatera test has gone down even more. I’ll take it!
2 -
Great news Bobbi Jo, congrats 🎉
0 -
@jobbibo, great news. I’m so happy for you.
I hesitantly switched oncology offices to the same company but closer to home in a smaller office, which is what I like. I am so happy I did. I like them so much better. The other office was not a good fit. I had gone to that one when I moved and had been there eight months. I saw the doctor for a total of about 15 minutes the whole eight months. I also wasn’t clicking with the NP.
The actual doctor was on vacation this week, which I wasn’t told, but his NP is so nice, and the doctor who was there for him was a sweetheart as well. Good decision on my part. I think I’ll like him too.
0 -
That's brill, Bobbi Jo. Delighted for you!
Change can be nervewracking, @kbl. I'm glad you're happier with your new team. Good luck!
0 -
0
-
@aoibheann Thank you.
0 -
Yay, Bobbi Jo, that's great news!
KBL, I'm glad you feel like it's a better fit at your new onc office
0 -
Thank you.
1 -
It's been quite some time being on BCO. Hope everyone is doing as well as can be expected. Last few months I've been preoccupied taking care of my father, who has recurrent advanced pancreatic cancer and now malignant ascites. I take my father to the cancer center x2 per week (paracentesis and bloodwork/blood transfusion/phosphorus. Then biweekly I take him for low dose chemotherapy. It's been a slow steady decline.
Thankfully I remain stable, had a recent FDG PET/CT scan. I thought for sure the mental stress would have exacerbated my cancer. Sometimes the Lord, gives you what you need when you need it. (Sorry if this religious connotation offends someone).
As far as research, I try to keep updated but have slacked off. Just curious if anyone is on a clinical trial or hear of any positive new treatment options for us. At one time, I was hearing about cancer vaccines, nothing of late.
Thanks for listening. Take care.
3 -
@tinkerbell107 Hi. It’s really good to hear from you.
I’m really sorry your dad is declining. I can’t imagine how hard it is for you. I’m sure he appreciates you so much for being there for him.
I’m so glad the stress has not exacerbated anything for you.
I’m not sure if you’ve had a blood biopsy lately, but I just had one, and I surprisingly found out I do have the ESR1 mutation, which opens up Elacestrant for me and some clinical trials. The only clinical trials I’ve done are imaging clinical trials.
You will be in my thoughts as you continue to take care of your dad.
0 -
Welcome back, @tinkerbell107! We're really sorry about your dad, but it is good to hear you're doing okay.
If you are interested in research, we recommend you check out our extended Research News section for the latest clinical trials, Breast Cancer Vaccines, and more.
Hope this helps! Looking forward to hearing more from you soon.
The Mods
0 -
KBL: It's so good to hear from you. Thanks for the kind words about my father.
Lately I feel so disconnected with MBC research, clinical trials, etc. It's good to hear you have an actionable mutation (ESRI). Last week I had a visit with the MO, she was not in favor of doing a liquid biopsy yet based on my treatment is working, feels it won't show anything actionable. I'm not sure if this right or not, wait until progression and then have a liquid or tissue or biopsy?
Overall, I'm hanging in and hope you are doing well. How is your daughter and grandson?
Mods: Thanks for your support and directing me to the Research News. I plan to check it out.
Hope everyone has a great weekend. It feels like FALL is here. My favorite time of the year.
0 -
@tinkerbell107 I miss my daughter and grandson so much. They’ve moved about 5.5 hours away from me and wanted time to acclimate, which I totally understand. We are heading up the middle of October for a visit, and I can’t wait. I haven’t seen them since June. It’s so hard after spending so much time with my grandson. I do FaceTime with him periodically. Thank you so much for asking.
I’ve been off Letrozole for over two years, which is what I think caused the mutation. I did feel like it had stopped working, so I might agree with your doc to wait and hope what you’re on keeps working.
I just got the call today that insurance denied the Gardant360, but I suspect they will appeal, and I don’t worry about that like I used to. They know how to play the game.
Please come back as often as you can to update us on how you’re doing. I missed seeing your posts. I know our little group has been quiet lately.
0 -
KBL: So glad to hear you will be visiting your daughter and grandson soon.
I will pop in every now and then to update and check in with all of you. One of the blessings I've found despite having MBC and cancer in general (my father's health care team), You meet the most amazing, supportive and loving people, virtual and in person. Thank you for being one of them.
0 -
I couldn’t agree more, Tinkerbell107. It’s been so nice to have the companionship of you and others through this journey.
Thank you for your sweet words.
I will keep you and your father in my thoughts.
0 -
This post has been pretty quiet so I’ll pop in to say hello all!
Tinkerbell - I’m so sorry to hear about your father. I’m absolutely sure he appreciates all you’re doing for him. I’m glad you’re stable in the midst of all the stress you’re going through.
kbl - That’s great to hear that you get to visit your family soon! As nice as FaceTime calls can be in between visits it’s definitely not the same. I hope you have an amazing time!
Has been pretty up and down here, still really just coming to terms with my diagnosis. Every little ache and pain freaks me out so trying to learn to cope with managing the anxiety that comes with this.
Yesterday went to the ER because my port got infected, no fun! Blood tests came back great / no signs of sepsis and no fever. I got some IV antibiotics and continuing with oral antibiotics. I’m going on my first trip since being diagnosed tomorrow, which made this infection the worst timing possible! Got a cabin in the mountains in Colorado. Got checked again today at the cancer center and they assured me it’s looking better and I’m good to go on the trip. Said just to watch my temperature and to go to the hospital if I ever get a fever. Going to try my best to enjoy the vacation and not let the anxiety of the infection ruin it!
0 -
kbl: every time I see your signature and see "missed diagnosis from 2013 to 2019" I can't help thinking "WTF?!!" what could have been done in those 6 years?" I am so sorry and angry for you and then I see insurance companies denying treatment.
WTF?
jobbibo: the port infection sucks. I have been really lucky with mine. Enjoy your trip!!
……waiting to chat with my MO about the last PET scan.
0 -
@elderberry Thank you. I’ve gotten past the anger. My new oncologist and I just had an hour-long talk today. Although he’s not going to be my favorite, I’m going to stick with him. I am done changing. I said something about if they had found it in my bones and knew what it was, it may not have spread to my stomach after six years. He didn’t agree with that, but I think we both agree there isn’t anything we can do about that lost time.
We do agree that Elacestrant is next, so he’s starting the approval process. I will be off all meds for two and a half months, so let’s hope it doesn’t decide to pick up steam. Part of that is my choice because I don’t want to start something new before I see my grandson.
Medicare has actually been very good for me. They haven’t denied any testing until this Gardant test, and I think that’s the norm to deny these.
Please come back and report on your scan. I hope it’s stable.
0 -
Hello, everyone. I haven't posted here in a few years, but I do follow this thread, and I'm grateful to be able to do that.
My story (sorry for the length): I was diagnosed with de novo bone mets from lobular MBC in 2019 after a few months of worsening back pain. Extensive spine and pelvic lesions found, and a T10 compression fracture. Had radiation to thoracic spine, mainly to protect my spinal cord. That intervention seemed magical to me because it put me into NEAD status within a few months and greatly reduced my pain levels. Also was started on letrozole (switched within a year to anastrozole) and Ibrance.
In 2020, I began to experience episodes of extreme abdominal pain, nausea, and reflux - and later, vomiting. These episodes would go on for hours, but they'd only happen every couple of months or so. Frequency has greatly increased, and after a recent hospital stay, I now can identify them as small bowel obstructions.
Recent scans show probable peritoneal carcinomatosis, among with a slowly growing thickened area of my transverse colon with narrowed lumen. The recent obstruction occurred in the ileum. I had a needle biopsy done when I was in the hospital, but there was not enough material for a tissue diagnosis. I will be scheduled (soon, I hope) for a diagnostic laparoscopy to see whether these lesions are from the lobular mbc or a new primary cancer. They'll also attempt a colonoscopy while I'm under anesthesia, since a previous colonoscopy attempt was unsuccessful (risk of perforation from severe diverticulosis was given as the reason).
Tumour markers are all high off the charts. Daily GI symptoms. On a low fibre diet right now.
I feel so alone with these symptoms and new findings, but I know there are many other people living with similarly scary and scarier things. Most of the time, I'm not really scared. I feel calm and ready for whatever comes next. And I do enjoy the moments in each day. But I felt the time was right to post here. Thank you, all.
KBL: Long ago I sent you a private message and you responded with a really lovely note, but I didn't see it until long after. I wasn't able to navigate the changing website interface at the time. Anyway, thank you, and apologies!
3 -
Wow! You have a lot going on. I'm so sorry for your having all these issues.
My hope is that soon the doctors will have a clear path ahead for you and that it will make your life more comfortable. Try not to lose hope.
0 -
There is no need to apologize at all. I’m so glad to hear from you. I’m sorry you’re having so much pain. I have not had a bowel obstruction. It sounds excruciating.
Can I ask which scans found the obstructions and the thickening? I’m not sure if you’ve had trouble with scans seeing your lobular.
Please let us know how the laparoscopy and possible colonoscopy go. I hope you can find the right treatment. Have they talked about maybe Faslodex or Enhurtu?
I’ll be thinking of you.
I did have a radiation consult, but there’s just too much to radiate.
0 -
Mojos, thank you for your hopeful message. I'm keeping the hope machine going. Mainly for a clear diagnosis and successful next treatment. I think of it as my next happy plateau.
Kbl, thanks for your very kind words. The colon thickening showed up on routine CT scans starting last October, but was half the size then. It also showed up, along with the signs of peritoneal carcinomatosis, on a CT colonography (also called virtual colonoscopy). I also had dilated small bowel loops (in the ileum) seen on CT, along with the obstruction, when I went to the ER. Had a presurgical MRI of my liver and pancreas last Friday, but no results yet.
My onc. told me I'd probably move on to Xeloda if lobular mets in abdomen are confirmed. Everything takes forever, it seems. And probably would take longer if I hadn't presented to ER with the obstruction. Hey, I survived the NG tube! My family calls me a brave buckaroo! I think we are all brave buckaroos!
1
