Best Of
How could I ever have foreseen...that I'd be here at year eighteen?!
Checking in on my survivor sisters with my traditional cancerversary post. I remember how much it used to help me when I saw posts from Stage III-ers who were WAY out from diagnosis (and there weren't as many back then),
Here's wishing you HOPE, which is one of the most important things we have in our toolbox!
Hugs to all - Julie
sugarplum
Re: Brain Mets Sisters
I thought that I was handling WBR fairly well but this week things have gotten harder mainly cognitively. I am having a hard time with memory and hanging on to thoughts or coming up with words. I used to be a very patterned person and organized in my processes and now I can't seem to remember what I was doing or wanted to do. I have become dependent on lists and taking someone with me to appointments so I can remember and understand what was said. Does this sound normal and will get better? I have session 5 of 10 today so I'm halfway there. I am a little off kilter and feel slightly dizzy when I walk but not enough to fall. Just not steady like I used to be. I also have mets to the cerebellum and that could be part of it. I don't know. My egg just feels a little fried this week.
emac877
Drains out today - started to cry
Double Mastectomy was on March 13th. My drains were removed today, and saline was injected into the expanders. All is going well with recovery from surgery. When my husband and I left the office and walked to the elevator, I started crying. Tears of joy, tears of exhaustion.
When I was first diagnosed and met with my breast surgeon, I thought, this is something I will go through and move on. It won't change me at all. Boy, was I wrong!! This journey is so emotional, and I am NOT the same. I am sure others will relate. Actually, I posted this because you are the only people who can relate. I am thinking of going to a few therapy/counseling sessions to talk in person about this.
Re: March/April 2024 Surgery Support Thread
Hello to the group! I am scheduled for double mastectomy on April 25 for a recurrence of DCIS. I had a lumpectomy about 18 months ago for a very small spot of low grade DCIS with clear margins but it’ has come back in the same spot as intermediate DCIS. I was offered another lumpectomy but would need to do radiation, which I’d prefer to avoid. Instead I’m planning for nipple sparing mastectomy with immediate reconstruction to implants, but have an MRI Wednesday to be sure there’s nothing else going on in these dense breasts. I’m 43 years old with 3 kids and have help from family the first 2 weeks. Wishing everyone in this group well in their surgeries and recoveries!
Re: How are people with liver mets doing?
emac877, candy-678, bsandra, irishlove, exbrnxgrl, divinemrsm, aprilgirl1, sf-cakes, cblaurenceauthor
Too often we underestimate the power of a kind word, a listening ear, a walk down memory lane or an honest compliment - all of which have the power to change a person’s day for the better. A smile is so valuable and I’m blessed to have you all put one on my face. Thank you for caring. Thank you for your encouraging words. Thank you for being you.
You all amaze me. There is power in numbers. Together we are stronger and all you wonderful ladies have proven that over and over again.
Love, Regina
rk2020
Re: My Husband, My Life, My Love, My Family, My Cancer
my dd got this cool shot of the eclipse !
micmel
Re: My Husband, My Life, My Love, My Family, My Cancer
hi ladies. Everything went very well. The food was delicious and we had a special group come to celebrate her life and we shared a nice dinner. My heart was heavy but I had my sister there and some special cousins of my mothers. Most of her relatives are unfortunately deceased. I enjoyed hearing stories about her and I am so thankful she was my mother. It was a day to celebrate her life. But I was also celebrating my love for her . It will never fade. She was such a good mom. I was lucky to have her for 53 years.
thank you for all the well wishes and support.
love to all. Goodnight
micmel
Re: STEAM ROOM FOR ANGER
I am slow to anger but I am floored by a recent pm exchange. Due to my unusually long survival at stage IV, I occasionally get pm’s asking about treatment, lifestyle, etc. I am always happy to answer questions but it’s often a let down as I have no secret diet, lifestyle, protocol, etc., to explain my progression free longevity. Today, I got a pm from someone I’d corresponded with recently. Here’s what stopped me in my tracks… she asked if I ever had breast cancer at all! I cannot tell you how hurt and angry I was by that question. 12 freaking years, biopsies, surgeries, recon, rads, collapsed lung, AI’s and she asks if I had breast cancer at all !!!
The idea that she thinks I am either faking it or that all my medical providers have been putting me through procedures and treatments I don’t need is beyond the pale. It doesn’t happen often but I am both hurt and angry.
Re: How are people with liver mets doing?
What a crazy week…
My current oncologist (Dr. J, who is 98% awesome) turned me down for a liver biopsy after the cancer spread from my lymph nodes, so I went to MD Anderson Houston on Monday for a second opinion. Dr. K recommended a liver biopsy and either Enhertu or Halaven depending on results OR a clinical trial if they could find one that is perfect for me. Although we have no scan evidence yet that Trodelvy is failing, the lab numbers (tumor markers rising and alk phos high) and new pain in my shoulder/side (referred liver pain), she felt that I was progressing, but to go ahead with my next Trodelvy (Wednesday).
Fast forward to Wednesday. Dr. J cancels Trodelvy, recommends a liver biopsy (scheduled for Monday), and to start Halaven or Enhertu on Wednesday, ordered a baseline MRI, and a new PET scan. So basically the same consensus as MDA, just happening 3.5 weeks faster. The big difference is she doesn't want me off treatment for the 28-day washout period needed for a clinical trial until we get the progression under control. I agree. So 4 rounds of Halaven/Enhertu then reevaluate for possible trial. I can always go back to H/E if the trial fails.
So I've been researching trials and found 19 I could possibly be eligible for, but they're all phase 1/2. I was hoping for more of a sure thing in a phase 3 trial, but by the time I'm ready for a trial, I feel like it'll be a Hail Mary pass anyway, so phase doesn't really matter.
This will be my fifth line in 4.5 years. Not bad, but I'm blowing through them fast (2 months on Xeloda, 4 on Trodelvy) in the last six months. I have no real targetable mutations (FGFR1 is the only one and there's only 1 trial for it) and until the biopsy says otherwise, I'm HER2- so I feel like my options are severely limited now. My liver has innumerable lesions, and though my liver numbers are okay, they're bound to go up if H/E doesn't give me a great response.
I've been pretty brave since my diagnosis, but I'm not gonna lie - I feel like I'm going 100 mph toward the edge of a cliff with no sign of a slow down and it's freaking me out. No one will give me a time frame (not sure I want one) but I'm guessing I have a year tops. I hope like hell I'm wrong.
Anyway, if you made it this far in my post, thanks for reading. It's good to have a place to write it all out.
Best wishes to us all for peace, strength, and health.