MBC since 2019

[Samsontheodore]

Wrote lengthy message about stopping Enhertu after 20 successful infusions because I now have ascites. Did anyone see that message about where do I go from here?

Renee Rich Henry

[Aprilfoolz1]

Renee, I'm sorry you have ascites. I don't see another recent post from you :/ Someone posted recently a YouTube from Dana Farber oncologists with a discussion on current treatments with a flow chart of what next steps could be for mbc patients . I'll see if I can find it and post it here . Have you had a recent biopsy to check for newly acquired mutations ?

youtu.be/sBMbmnRdZ74?si=-1E...(Not working as expected?)

Posted recently by HelenWi

[Eliactida1955 in reply to Aprilfoolz1]

So sorry about the ascites-concern with your liver. They might just give you a break and restart it. See what the onc say I haven’t been on this med at all. I would think if working they will keep you on it.🙏✝️

[Samsontheodore in reply to Eliactida1955]

Thanks for responding! My liver is fine…the progression of my cancer is what is causing ascites. Hope new chemo will correct this!

[Eliactida1955 in reply to Samsontheodore]

I wish you the best🙏✝️🌹

[Samsontheodore in reply to Aprilfoolz1]

Thanks for sending! Will watch!!

[Figletf]

So sorry that you developed ascites😣I have only had four Enhertu infusions and seem to be improving....but your experience is now scary to me.We try to improve one thing and can end up with another problem 😢

🙏🙏🙏 that your oncologist has a plan to heal your ascites.❤️

[Samsontheodore in reply to Figletf]

You are so right! We want so badly to catch a break and have some “normal” days with MBC, and then something weird pops up like ascites. Odd part is my liver is fine! Supposedly just a progression of my breast cancer flailing up. Thanks for responding! Enhurtu was good for me! Rare manageable side effects after 20+ infusions! Hope it’s good to you, too!

[TammyCross]

If I click on your handle, there are only two posts from you, ever. One is "God is good," and the other is this one. Your bio has no info on your treatments. Do you have that lengthy post, or can you recreate it, or is this question you posed sufficient?

[Samsontheodore in reply to TammyCross]

Not good with this site (although I love reading shared information)! Why I do Facebook under “Renee Rich Henry” and give updates! Will try to recreate original post!

[TammyCross in reply to Samsontheodore]

This site sometimes eats messages. It will delete them if you let it sit too long before sending.

[NPmary]

I am so sorry, no, I did not see your post.It looks like you have had MBC for less than 3 years and now you have ascites! That really, really is awful. I am sad and sorry for you. You haven't had as much time as many of us before facing a devastating progression.

You ask: "Where do I go from here?"

Emotionally/Mentally/Spiritually:

Know that feelings/emotions, change, they come and go, not good/not bad, they are. When we push them down - they find a way often to bounce back (often disguised (sadness under the anger . . . ). Lean on what has worked for you in the past: people who love you and know how to listen without judging; practices that have helped you in the past ( ? journaling, reading, music, crying, hitting things, walking, church, praying, meditating, sewing . . . whatever ?).

Physically:

Take the best care of yourself that you can. Comfort yourself in whatever meaningful ways you can. It might mean asking for help, ordering your favorite food, buying a down feather pillow, taking a nap. Finding a palliative care doc or NP or social worker or therapist that you click with. Figuring what comfort meds versus their side effects help you.

Medically:

You have probably already had the discussion with your doc (what to do next, treatment, meds, parcentesis, prognosis, paliatve care, hospice, ?????? . . . Maybe you need to have it again . . . Maybe you need a trusted person to be with you when you have it.

Maybe you need a second opinion.

I hope I have not made you feel worse with too many words . . . with my groping for how to communicate kindly, with compassion and love . . . because, of course I can't really answer: "Where do I go from here?" I can only share some things that have worked for me while living with this and grappling with decision-making (multiple mets, progression 3 times, med changes, chronic daily pain, ridiculous number of varied losses, one potentially devastating side effect of treatment).

Wishing you love and peace and comfort and time. Mary ❤️💔🌺💔❤️

[Samsontheodore in reply to NPmary]

Actually diagnosed 12/19, so entering my 5th year with MBC. Felt at rate I was going with chemo Enhertu being so successful (20 infusions), that things were finally going my way.

Meet tomorrow with my oncologist to try new chemo to get rid of ascites (not due to liver but some cancer progression). My Petscan even showed some cancer had disappeared, so was feeling optimistic! Guess I’ll get answers tomorrow. Thank you for taking the time to reply! It’s a “day by day” journey we all understand! 🙏🏻🥰❤️

[awesome4ever in reply to Samsontheodore]

Good luck with your appointment tomorrow. If you have ascites and you say your liver is normal ( meaning there is no mets there and your liver function is good) then typically that means that your cancer has spread to the lining of the organs—the peritoneum causing leakage into the abdomen. This can be a very serious development and needs to be addressed quickly. Since your appointment to find out your next treatment is tomorrow that is wonderful and I wish you the very best as you try to beat this new development. Take care and I look forward to reading your update. Congratulations on 5 years living with MBC.

[NPmary in reply to Samsontheodore]

Glad to hear you got 5 years on Ibrance (me too, that's good). Your doc sounds positive and hopeful, that's great.Best, Mary.

[Samsontheodore in reply to NPmary]

🙏🏻🥰❤️