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It's been awhile....

Hello -

It's been awhile since I've checked in. This forum has changed a lot since then. I can't find the usual discussions I stalked and participated in - so starting a new thread.

You may see from my history that I was diagnosed as a Stage IV de novo with lobular at the age of 50 (mets to innumerable bones). That was in 2018 - seems like a lifetime ago. This website was so valuable to me in the beginning for gleaning support, information and tips about my diagnosis and treatment. I even traveled out of state to meet with a fellow member to commiserate and bond over our mutual diagnosis.

I wanted to report that my most recent imaging showed no activity from my stupid, lazy cancer. None of my imaging since diagnosis (FDG and estrogen avid scans) have ever showed any activity. Aside from the minimal side effects from Ibrance/letrozole, my life has not changed from pre-diagnosis. I still work full time, I have custody of two rambunctious elementary school boys, I am as active as ever.

Back in 2018, when I was first diagnosed - I thought I was going to die any day. I was in a terrible and dark place. This forum gave me an anchor. I hope my story gives light and hope to you.


Leigh


Comments

  • elderberry
    elderberry Member Posts: 1,037

    leigh68: Welcome back. BCO "updated" the platform and it has been one big mess ever since. An entire thread is dedicated to complaints about the glitches and problems.

    Happy to hear your cancer is indolent. I am pretty sure all of us de novo MBC all figured we'd be dead in weeks.....a year if we were lucky. Check out Mel's living room. I am not good at copying links so just check "My Husband, My Life....." and there is a de novo thread as well.

  • candy-678
    candy-678 Member Posts: 4,073

    https://community.breastcancer.org/forum/163/topic...

    Here is the link to the Mel's Living Room mentioned above per Elderberry.

    Good to see you back. It is nice to hear that you are doing so well. I was on Ibrance/Letrozole for 4 years before progression and the change to Lynparza. I am surprised-- yes jealous- that you are not having bad side effects of the treatment. The Letrozole made me feel like the "tin man" stiff and achy. And the Ibrance made me have fatigue. Then there was constipation, hair thinning, mild nausea, etc. I had to stop work due to the low counts making me immunocompromised (I was in the healthcare setting with lots of germs around). And, Wow, you are working full time AND raising a family. Wow. Good for you.

    Come see us in the Thread above.

  • moderators
    moderators Posts: 7,684

    Yes, welcome back, Leigh! And THANK YOU for sharing your status to give so many here hope and inspiration.

    --The Mods

  • satxllamamama
    satxllamamama Member Posts: 1

    Hi Leigh,

    I was just diagnosed and started chemo yesterday. I also am a single mom w a very spirited and unique 5th grader who I honestly learn new things about every day. Your post gives me hope during this scary new still unknown normal. I’m trying to coach myself and those around me to enjoy and live every day (if not enjoy then be present. Even in misery). Thank you so much.

    Your strength and optimism is much needed.

    Jenny

  • lehrski
    lehrski Member Posts: 68

    Thanks Leigh for sharing your story. It gives hope and so happy for you. I was just going to post and couldn't figure out where so this thread could work. I just got my two-year scans. Blood tests look good and much better than at the start for whatever that's worth. I still have small tumors in my spine, pelvis and lungs, but they haven't changed in size in a year. I ran a mile race last Saturday and I'm working full time plus. Not where I thought I would be two years ago. Things could change anytime, but life is good now.