Best Of
Re: Can we have a forum for "older" people with bc?
I have had the mapping done for the radiation. My RO explained how much that goes into deciding the actual plan for treatment so I was prepared, or thought I was 🙄, for the length of time before starting. I see my surgeon tomorrow so hopefully there won’t be anything to delay it more. The PA at my post op and the RO both said everything was healing well. I just am impatient to start though I’m not sure why. 🤷♀️
Take care everyone. 🙏
l1ttlec
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
Hi all, I’ll be in the road on Monday heading back to Houston but wanted to provide an update. Routine Brain MRI on 6/28 showed mets have “blossomed”, spine MRI on Monday found no evidence of lepto mets but I am scheduled for a lumber puncture next Thursday, then we decide from there, either gamma knife again or whole brain radiation. With my current neuropathy and double vision issues, I am feeling untethered. I’ve had this scare a few times before but I not as confident this time. The spine mri being clear is definitely a good sign but I am having some trouble convincing myself of that. I’ll pop in to the cell if I can, otherwise, I’ll see you all the following Monday. FYI, there’s only a few spots the are new or grew but 2 are near previous radiation sites are a few new one are along the brain stem/spinal column area, which is why they’re digging deeper. Wish me luck 😬
illimae
Re: Faslodex Girls Thread
@brutersmom thanks so much. Especially on the ice pack tip. I was clearly doing the exact opposite 🙈🙈. As for the refrigeration. I didnt get that. Its refrigerated and then taken out a few hours in advance? Or its just not refrigerated at all?
Re: Unilateral or Bilateral Mastectomy - Pros & Cons for ILC
@kayakcamping Thank you for sharing more information about the Signatera process, that sounds fascinating, and I'll definitely ask my oncologist about it at my follow up. Thanks also for sharing your whole decision making process. Not only are our timelines so similar, our goals at the outset were very similar. And as information became available, and consults happened, some of the options had to move into the background, until ultimately a choice was made. I hope that I feel as good as you sound now in a couple of weeks, but more than that, I hope your new breast continues to feel more and more like you. And even if not, there is comfort in knowing you have a seemingly wonderful surgeon who is willing and able to help you get there.
@tacocat One other thing that was super helpful when I was having such a hard time weighing pros and cons, and sleepless nights feeling guilty about taking extra time to come to a decision when the main goal was always to just get the cancer out ASAP came from a friend who said she found this little switch in the word order helpful for her — " don't worry about what is the "right" decision, simply focus on making your decision "right"."
karstock
Re: Unilateral or Bilateral Mastectomy - Pros & Cons for ILC
Yes, BCS is breast conserving surgery.
I am struggling with whether to continue treatment or just go to surgery. My scan was not great yesterday and I see my med onc Friday. I am also trying to wrap my head around having 1 natural breast and 1 reconstructed. It's really helpful to hear from both of you and your experiences.
tacocat
Re: Anyone starting brand drug, Enhertu?
Reached my 1 year mark for Enhertu. Not sure how many infusions at this point… no more than 17, no less than 15. I’m on an every three week cycle. Still on full dose but have asked about a reduction. Care Team is not inclined to do that unless my side effects start to really become a struggle.
For me, side effects have stayed about the same. General loss of appetite and bad fatigue for the first 4 days afterward, but then it all disappears as quickly as it comes after that.
My last scan a few months ago was great and I’m due for my next one in a couple of weeks.
I’ve dose reduced steroids to 6mg in my pre-med IV bag. My onc doesn’t recommend going below 4mg for whatever reason.
Watching for progress with new drug developments like a hawk and wondering what my next line of therapy would be at this point.
I’ll reach my 5 year mark in September, and I feel confident I’ll make it…or at least, if I don’t it won’t be due to the cancer. I’m looking forward to posting on the thread someone started a long time ago that asked for 5 year metavivors to post. It gave me a lot of hope when I first got restaged in 2021.
Re: how about drinking?
Decided to go to Walmart on Friday which is the first of hubby's two days off and get another tomato and bell pepper plant. We were gonig to get cukes and plant them in a window box but we decided we are just going to buy them and get the pickling stuff and do them as we want to. I'm itching to try my daddy's aunt's recipe for refrigerator pickles. He tried some at my aunt's house last weekend when we stopped for a visit and lunch on our way back from planting the lilac on our property.
m0mmyof3
Re: Can we have a forum for "older" people with bc?
Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.
betrayal
Re: Faslodex Girls Thread
Hi everyone, @gailmary good to see you. Yes like you I’ve been on the injections Fasoldex for 4 years along with Xgeva. I’m learning lately how important those F injections are.since I’ve been recovering from Hemorrhagic bacterial Pneumonia still since May 16th to 21 hospitalization, my oncologist along with his Pulmonologist who works with him have taken me off the Verzenio for 2 months yet want me to stay on the injections. I had my followup with them yesterday, and I was seen first by my Pulmonologist, who was very pleased with my latest CT scan which showed my lungs were improving, yet their were still som issues sill resolving. My choice is still almost gone and I still am breathless talking. My Oncologist also was very pleased with my regular Scans done recently They were all stable no progression anywhere, yet he feels that he wants me to stay offf the Verzenio until next followup because he and my Pulmonologist feel I could end up in the hospital again if he Verzenio triggered ne coughing. My las were good and hey feel my immunity is good and they dont want risk anything putting me back on the Verzenio. So it’s been a long recovery of that Bacterial Hemorragic Pnuemonia. I also want to say hi to dear @threetree , and @irishlove & @eleanora @wren44 & @malebreastc who I always see in other threads. I would also like to say hi to all of you here I haven’t yet met, and welcome to the group you never expected to have to be in. @brutersmom @airlinegal @eddiej @gramtype @patti47🩵🩵🌷
Re: Medicare coverage of post-reconstruction MRI
Hi @maggie15,
A quick update…. I took your suggestion, I contacted both Compliance Officers and received an immediate reply. They are investigating. Meanwhile, I had a letter delivered via MyChart from another Director somewhere in the patient relations food chain. It lacked empathy, understanding, and had flawed facts - 2 weeks after the Medicare dismissal he still thought the claim was pending. I found his email address and wrote back, correcting the facts and received a more empathetic reply. It appears Compliance is looking over their shoulders. He indicated they "leveraged our compliance team’s expertise to ensure this outcome is utilized to reeducate our coding and billing staff on the accurate steps to follow for Medicare claim discrepancy follow-up….we are taking the necessary steps to mitigate similar scenarios in the future."
THEN, equally as baffling, just 2 days ago I received a Medicare MSN, dated 15 days after the dismissal letter. It said the claim has been approved. Go figure. After all this mess, the provider is getting $51.25 for a $223 tab. No wonder they wanted the billing specialist to drop it. Kind of outrageous that they wanted me to pay $223.
I have requested copies of the various claims the provider submitted, complete with diagnosis and procedure codes — even though I no longer need to appeal the dismissal/denial. And at this point, I've decided to keep this year's appointment. But if this happens again, I'm done.
Wishing only good things to everyone who reads this.
JL