Best Of
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.
Re: Any stage IV surviving 5+ years ?
Hi Everyone,
I am so glad to hear of your great progress and I too need to hear that there is hope to live longer. I am 3 years in June. I am on Ibrance and faxlodex. Some days I feel I am anxious waiting to the next shoe to drop. If I keep busy I almost feel normal. If I can plan a trip, my mind is more occupied with the trip and less about Stage 4. The depression sets in and I feel no one cares if I live. So I needed to come on here and seeing many long term survivors helps. You all got me through to this point. And I’m hoping you all will keep me on a positive and hopeful journey.
20 years and still around
Am posting after a long gap. Want to let you all know that I had my recent Pet scan this week and got all clear.
My first diagnosis was in 2004 and recurrence in 2021. I am on my 29th cycle of Fulvestrant and Ibrance. In December 2021. I had mets in spine, lungs, liver adrenal glands, chest walls. My latest scan this week showed complete resolution and complete response to treatment.
So there is always hope..
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
When I received this unexpected diagnosis, my instinct was to panic…and I did, briefly. To that we are entitled. However, I immediately made an appt with my internist who recommended a surgeon, who, in turn, recommended an oncologist. This happened over the Thanksgiving/Christmas holiday, so had to play the 'waiting game' a lot. I shared my diagnosis with good friends who offered immeasureable support. I studied my diagnosis and read papers in my free time and this helped me to ask the right questions (for me) to the various docs. I joined this BCO site and it was incredibly helpful and supportive. In hindsight, everything came together as it should have and I can honestly say that I have no regrets regarding any of the decisions I made…some of which the docs questioned, but ultimately supported. My advice...you WILL feel overwhelmed and out of control, but try to step back, make a plan, don't be afraid to lean on others, educate yourself to where you do have a basic understanding of what you will be going through (this site was very helpful with that), because you will be asked to make decisions about something very new to you. I am now facing a new cancer diagnosis (colon) and am finding that my BC experience has prepared me well.
murfy
Re: Stage III Cancer Survivors...15+ years and out
Hello lovely ladies,
I am now out 19 years form a nasty invasive Stage IIIC Hr/PR neg her2 pos BC lots of nodes and invasion to ducts, lobes nipple , lymph, vascular and a bit of chest wall!!
I use to come on these boards daily back in the early days for hope an information.
We've come a long way.
Wishing you all a gentle ride on the BC road
lkc
Re: Bilateral Mastectomy Club
I had a double mastectomy on the same day as flowergirl - May 31, 2023. I remember we were talking on this site around that time - nice to see you again! I had a small complication from surgery (a hematoma), but it was fixed quickly and I haven't had any further issues. I didn't have any reconstruction and I don't want it, so I don't have any plans to see my BS again - though she is great.
For anyone interested, I'm super-happy with my decision not to reconstruct. I mostly just go flat, and shockingly to me, most people don't even notice (I was DD before). I love not having boobs - I can jump and run and there's no bouncing or need for a bra. I can now wear all those flowy summer shirts that only women who don't need bras can wear! And if I want to look like I have boobs for a particular outfit, I can always wear fake ones. It's rather awesome!
devoinaz
Re: Life does not end with a stage IV diagnosis (really!)
Thanks so much for asking the question about enjoyable activities. It's great to read what everyone is doing. I find that having a daily schedule of things I enjoy is helpful for me. I am retired and my children are grown with their own lives, so the schedule lives only in my head and can be modified in an instant, but it gives me something to cling to on the days when I'm at loose ends.
First thing every morning I have several cups of coffee while I read through emails and visit BCO to see what's up. I then read for 30-45 minutes, as books are a great escape. After breakfast I ride a stationary bike for 45 minutes while reading on my kindle propped on the front. At some point every afternoon I will knit, as I find the rhythm and repetition very soothing. When weather permits, I take a 2-3 mile afternoon walk on a local trail, as trees are comforting.
On a larger scale, I am on a 6 month scan schedule since my Stage IV diagnosis about 20 months ago, so each time I get the "all clear", I book trips and buy theater tickets, as travel and theater are two things I love to do. Having things to look forward to keeps my mind away from the dark places.
I've always disliked the phrase "You only live once." Not true. You only die once, but until then, you live many times. I intend to live the hell out of every day until the inevitable and I wish the same for all of you.
Eleanora
eleanora