How long have you been Stage IV?

Today is my cancerversary - 2 years de novo Stage IV with liver mets

Went in for a PET scan on June 2, 2022. Received results on June 6th. Lesions found on my ribs, vertebrae, enlarged node (will be biopsied). It was also discovered that I had a pleural effusion(I thought the cough was long term COVID and shortness of breath due to weight gain/being out of shape). Testing from thoracentesis showed it to be MPE on June 10th. Getting a head CT on June 16th. I was originally diagnosed stage 2, two weeks after my 38th birthday. Now age 45 and stage 4.

The posts on this site have been so incredibly encouraging. I can learn to LIVE with MBC!!

mamadetres, sorry to hear of your diagnosis. It’s unfair for young women like you to have to deal with stage iv bc. I hope that you get the support you need from this forum in the same way that it’s been a lifeline to me. Best wishes as you start this new chapter.

Head CT came back clear!! Yay! Meds were approved today. I should start Kisquali/Letrozole on Monday. Waiting to hear back from infusion center on when to start Zoladex/Exgeva.

Just joining this fine MBC group (wish I could say with pleasure) certainly with some anxiety and much reluctance. This spring, I just thought it was "sciatica". June 15,2022 PET-CT confirmed bone lesions on spine, ribs, right hip and tailbone, etc. Onco Dr. meeting is next Tuesday the 21st, so with a long weekend ahead I'm trying to get all my questions together for her. Does anyone have suggestions so I don't miss anything? I'm sure there will be a biopsy of some sort scheduled soon to see if the cancer is the same as the original ( hr+pr-) from 2011. Can I start any meds before the biopsy? Thank heavens for Xanax and all of you. MJ

mjmoose: Welcome to the club to which no one wants to be a member. Ditto on what Sunshine says (but I still go to Dr Google and freak out anyway then confess to my MO) Have someone with you when you see your MO so that person can take notes. If you can't go in person, go on speaker phone. My first meeting all I heard was "MBC blah blah blah" "Prognosis blah blah blah.." "Treatment blah blah blah..." I was grateful to my friend and her notes.

Easy to say but try not to freak out. If you need to take an anti-anxiety med, do so. And come here and to all the other threads. You will find much support and cyber love.

8.5 years. I did Herceptin and Perjeta for about 5 years then Herceptin hylecta. Sadly my tumor markers have been creeping up this year. PET scan and MRI show nothing. I’m mentally buckling down for more tests, new drugs, possibility of a new site. Ugh

I was diagnosed March 7 this year with stage 4 metastasized to my lungs. Pet scans were negative. All 5 lesions all under 1 cm, both lobes. They did surgery to remove all known lesions and several lymph nodes with good margins for all tumors. All were breast cancer cells. They were not all the same, however. Some were HER2+2 and some were HER2+0. All HR+ PR low and KI67 was high. 2 weeks after the final surgery I started navelbine April 7; day 1 and day 8 every 3 weeks, and 5-6 weeks later my cancer marker CA15-3 increased for the first time to 42. They check it regularly now and it goes up or down a couple points. 42, 36, 37, 34, 35. But rather stable. I had a CT scan end of May that was clear, they want to continue to watch but they believe most of what they see in my lungs is surgery related. I will have another scan in a couple more weeks. I have few issues with navelbine except ANC. I wanted my team to give me Nuelesta at my last chemo. They declined and stated they will just watch it. I do not want to miss my chemo. I don’t understand their reluctance to make a plan. My ANC is consistently dropping and by next week it will be below 1 and too low for chemo. If I just do as they tell me. I will miss my next chemo. I have a script to get a blood test post day 10, Nadir for Navelbine. If it is below 1 I believe they will put in an order for neupogen injection, I hope. I need that 72 hours prior to my chemo. But why do I have to request this plan and really push for it? Why don’t they look at the trend and see that my ANC will be too low? This does cost me, traveling 4 days early for my 7 hour, one way trip to my cancer center and pay for several days of a hotel when all they had to do was give me the Nuelesta when I was there fro my last chemo.

I am thinking of going to a new cancer center for a 2nd opinion, anyone know much about the Cleveland Clinic? I called them and filled out their registration paperwork and was told to call them before 5pm the next day, I did, but no one called me back, I left a message on voice mail. That was 3 days ago.

I just want treatment I don’t have to fight for and I don’t want to miss my chemo if it is not necessary. Any suggestions? Sometimes now that I am stage 4 it seems nobody really seems to care much about my treatment. I had to really fight for pulmonary rehab, stage 4 cancer doesn’t generally get to have pulmonary rehab, I was told Medicare will deny it, but my pulmonologist took care of it. I got my rehab, but getting a different level of care bothers me a lot. My lung issues had nothing to do with cancer it was the fact I had 2 lung surgeries in 4 weeks and my lung didn’t seal like it should have because of the wedge surgery, not because it was cancer. I just feel like the treatment is much more lax than it was first time around.

I have no intention of letting this cancer win this fight. I am healthy. I graduated from pulmonary rehab in just 3 weeks. I walk a 20 minute mile and ride my bike for 3-4 miles 3 times a week and well I want my best chance, and for that I need my team to believe in me.

just checking in with you Jacque! How has Enhertu been

mjmoose and other fine people here. I am sorry to hear about your diagnosis. Like you mjmoose, I thought mine was sciatica, really, really, really painful sciatica. I was diagnosed in Dec of 2020 so I am not the newest but new. I am heartened to see so many of us living on with this disease. I had BC in 2016 and once "recovered", I had three years of clean mammograms. But here I am. In the beginning I took a lot of anti anxiety meds and boy did that help. I would say don't let anyone try to guilt you about that. My palliative doc is great and I depend on her emotionally as well. I was on dexamethazone so in the beginning the anxiety meds never made me tired. Now that I am doing a lot better, I only take them occasionally because of how they tire me (but not allowing me to nap). I take long released narcotics for pain and I am on a low dose of zoloft and I use sleep meds in addition to cancer meds ibrance, falsodex and so on. I try to do yoga everyday. I am trying to live my life fully and as long as possible. Lately I am able to do so without the deep depression I experienced in the beginning when I was very sick needing neck surgery and having to stay off my left foot for weeks because of impending fractures. I spent my 65th birthday in rehab. Family can be a great comfort but also difficult at times as each has their own life and troubles. My husband is devastated but cares for me with every fiber of his being. Unfortunately he has always suffered from extreme health anxiety so you can imagine how this might exacerbate that. My grown son and daughter are wonderful supports but like I said have their own needs. My daughter is in the midst of possible divorce with a 2 year old daughter of her own. My granddaughter is the joy of my life. But with covid and other worries because of my immune system, sometimes I can't see her which just rubs in the pain of all of this. Wish none of us were in this club but since we are, I am grateful for this shared support. Be well!