Best Of
Re: Starting Chemo July 2025? Gather here for support!
@iambecoming I received cycle 3 chemo today, AC. Tomorrow I return for IV fluids and the shot. I will get the same shot, not dose reduced because my counts don’t warrant it. They do schedule it 24hrs from the infusion the day prior. Thanks for that tidbit! Good info to know. There are so many nuances to all this. Every time I get on a message board I learn something new.
I did read a small study about adding Pepcid with the Claritin. It had a good success rate. Although it’s anecdotal I am happy to give it a try. I took it the past couple of days and my pain was better. In all fairness I won’t attribute it to the Pepcid/Claritin combo since I am at the tail end of the shot’s effect.
But I will continue the Pepcid and see if I notice a difference this week. My NP prescribed me Toradol pills in case it got really bad again.
Take care and thank you for the information! 🩷 It’s time to be Sleeping Beauty again.
Re: CT and Lung Nodules
Marge, I’m glad you finally got a date for the chest CT. I hope it and your breast imaging are all good.
Scans seem to come in bunches. I have a chest CT and thyroid ultrasound on the same day in October, convenient since I will only have to make one trip for both. I asked about going to a yearly CT and was told my chance of developing some kind of cancer in my lungs was the same as someone who smokes a pack a day. I guess I'll keep up with the program. It wasn't planned but I ended up with a liver fibroscan and MRIs of the brachial plexus, brain and cervical spine within two weeks. Hopefully it's a false alarm but I have an appointment with a neurosurgeon in a couple of weeks. I have a theory that I'm a watched pot so I will never boil.
@bookworm14, I hope you are doing OK and the Itovebi is not too difficult a treatment.
Cindy, Here's hoping your lung and thyroid are keeping a low profile and the GERD treatment is helping.
I hope everyone else watching lung nodules is seeing nothing of concern.
maggie15
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
Great pic, thank you for sharing. I saw a post recently and my first thought was to send it to her 😔
Though sad, Kris lives on in my thoughts and when I see or hear Sally Field.
illimae
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
I'm so disappointed I had to miss last week's meeting because of travel. I wish I could have been there to honor and remember Kris. What a loss for us all.
I was privileged to meet with her twice in person, we could have talked for hours! Here is a pic from our first meeting in Feb 2024
mozuke1
Dont settle.....Go to where they are changing the standard of care, not where you are confined by it
Below is a letter my wife wrote to West Cancer Clinic in Memphis TN. For the past 8 months we have both spiraled in what felt like a hopeless system. We had our first visit to Vandy on the 14th of August and it was an eye opener:
- Are you considering having children again? We were told by West that this would never be an option.
- Have you considered having the mets in your liver removed and approaching the breast in a curative manner? Again we were told this wasnt an option.
- Our case is going to the tumor board this week. We are hopeful that our treatment options change.
Lesson Learned: For-profit clinics are locked into the established standard of care regardless of age. My wife's youth was never factored into the treatment protocols. I hope this empowers someone, somewhere to not settle for a hopeless regime of drugs to control your cancer. if they arent trying to cure you, go elsewhere.
Subject: Transitioning My Care – as a patient you failed
To Whom It May Concern,
I am writing to inform you that I have chosen to transition my cancer care to Vanderbilt-Ingram Cancer Center. I will be requesting a full transfer of my records.
I want to be clear: this decision is not about individual providers. I am deeplygrateful for the care I received from Dr. Hahn, Dr. Benn, and Dr. Jackson. Theyhave treated me with compassion, clarity, and skill—exactly what I hoped forwhen I put my trust in West. But the system around them is broken.
I was diagnosed with metastatic breast cancer at 39—just four months postpartum, newly married, and one month shy of my 40th birthday. I work full-time. I am raising two young children. I am a whole person.
And I cannot imagine spending the rest of my life fighting this hard just to get basic support from the very place meant to care for me.
The lack of care coordination, mental health access, and meaningful patient engagement has worn me down. It has left me resentful, isolated, and disheartened. I shouldn’t have to chase referrals. I shouldn’t have to beg for help. And I shouldn’t have to feel like I’m complaining just to get what any comprehensive cancer center should provide.
There is no patient advisory board. No structured feedback loop. No clear way to advocate for change beyond individual pleading. You’ve built a system that treats patients like data points, not people—especially people like me with terminal illness, who deserve more dignity and agency, not less.
This is not sustainable. I refuse to spend what remains of my life inside a system that makes me feel like I don’t matter.
Again, I thank the providers who truly saw me. But West, as a system, failed me.
Nadia
Re: I’m on hospice - anyone else?
Kris and Caryn were such great people and always quick with a kind word. I can’t believe they are both gone. Much love to their familiea
Re: BCO In Memoriam thread, Part 2
I am very sad to hear KBL is no longer with us. So, so sad! May she rest in peace. I am heartbroken. Exbrnxgrl and now KBL. I can't express how sad I am.
Elevated CA 15-3, Stage 3, without metastases
Hello everyone,
July 2024 – Diagnosis: breast cancer ER+ / HER2 negative, with lymph node involvement, no metastases, stage IIIA. I had a CT, MRI, and PET-CT before starting chemotherapy.
August 2024 – I started chemotherapy, but before that I measured CA 15-3, which was elevated at 74 U/ml. It increased up to 92 halfway through the treatment, but returned to normal limits after I finished chemotherapy (24 U/ml).
After chemo, I had surgery, and before starting radiotherapy I checked it again – it was 21 U/ml. The next measurement was done 6 weeks after radiotherapy, before starting the first cycle of Ribociclib, and CA 15-3 had risen slightly to 24 U/ml.
I started Ribociclib preventively, because I have a high risk of recurrence. I tested the marker again after the first cycle of Ribociclib, when it had increased to 29, and again after the second cycle of Ribociclib, when it rose to 34.6 U/ml.
These increases make me quite anxious.
Are there other people in stage III who have experienced a rise in tumor marker after starting Ribociclib (Kisquali) or Abemaciclib (Verzenio), without this being associated with the appearance of metastases?
Wishing you all good health!
ghf2025
Re: Brain Mets Sisters
@illimae thank you for the additional information! The photo looks like it hurt. I’m glad it wasn’t too bad. I wish I was a naturally optimistic person. I think it would help me through things better.
Strange turn of events from the meeting today. It was a meeting to discuss options, which was never told to me. I got a call on Friday to go over my recent scan results and they said they weren’t sure of next steps, so they would discuss at rounds on Monday and call me back. Monday morning rolls around and I was just given an appointment with the neurosurgeon. I assumed a decision had been made and no one told me otherwise.
Anyways, it turns out I can either re-gamma knife it or have surgery. Neither was presented as the better way to go or the recommended option. He said they’re both somewhat equal. The spot that was treated a year ago is in the middle of two round shapes. The MRI isn’t clear enough to show if it’s all one long tumor or if it’s actually 2 smaller ones joined along the very edge. One of the complicating factors is that it butts up against a large vein and, again, they can’t tell if it’s attached to the vein or if it’s just pushing on it. If I had surgery, and it’s attached, he said he would likely have to leave some cells behind to be treated with radiation ~1 month later. I would also have to come off H&P for about 6 weeks. Which I’m not sure how comfortable I am with either of those risks. However, if I choose to do gamma knife again, they will likely fit me in next week and if it doesn’t behave, then surgery is on the table in a few months. I think I am leaning to trying gamma knife again as it has worked really well for me on the previous ones, knowing that I can do surgery if needed, but I would be interested in your thoughts.
Thank you for listening.
harrow
Re: My Husband, My Life, My Love, My Family, My Cancer
Looks like my post from earlier did not post.
Was not earth shattering. Slept pretty well, Laundry with couple of outfits washed in a mesh bag, spun and hung up to dry in my heating rack with a tent to contain the heat, helps with not damaging clothing by tossing in the dryer. Leaving the heating rack out tonight, cats are chill with it now, scared when setting it up.
Making some decisions with food, not enjoying crunchy or regular tortillas. Thinking I may toss all, just not a sandwich person. I see no issue with throwing some food in the quesadilla maker for two to three minutes. Still liking beans, rice, peppers and eggs. I still enjoy queso as well. Need to do a meat and pepper kind of vibe, can even add beans and mushrooms to it. Cheese and rice with beans would be good as well. Got chipotle mayo which can turn down spiciness of that with sour cream. Just need an overhaul, is not about carbs but more about enjoying what I eat. Make my own rice bowls or other stuff.
I did eat my queso bowl from Walmart, yummy and this evening had some leftover pizza, just cold, should be done by tomorrow.
I do hope all had a good day, even absent I was in everyone's pocket.
