u/TrafficCharming6633

Going to be cross posted for a few ideas.

I've struggled as a metastatic breast cancer patient with how to interact with friends and family, and one thing I have noticed are many people commenting the same. Perhaps friends and family members were trying to help and just said something that felt wrong, or us as cancer fighters felt like we couldn't express the way we feel about our fight. I had some conversations with family members, and had a thought.

I've got degrees in English and writing, and I have wanted to find some way to use my cancer journey to make some impact on the world aside from slowly losing my hair and my dignity. I am thinking of trying my hand at writing a book, by a cancer patient, but for all the friends and family members of cancer patients on what we want them to know about our journey, of what helps, and what DOESN'T help, and how to show up for us.

I'm trying to decide if I want to write it from the viewpoint of a cancer patient or specifically a breast cancer patient (the journeys can be very specific for different types of cancer) and flesh out ideas for my outline.

So I'm throwing myself out here to ask a few questions:

Is this a dumb idea? What are your thoughts and opinions about such a book? Would you also as cancer patients think such a book would be helpful? What would you put in a book like that if one existed?

If anyone wants to answer a few other questions that would help me flesh out ideas beyond my own experiences:

What's something a loved one said or did that really helped you?

What's something people say that hurts, even though they mean well?

What do you wish people understood about your day-to-day life with cancer?

What's the most helpful practical thing someone has done for you?

Was there something you needed but didn't know how to ask for?

How do you feel about "fighting" language — "you're so strong," "keep fighting"?

What's one thing you'd tell someone whose friend or family member was just diagnosed?

I'm open to criticism if you think this is a stupid idea, too. As a cancer patient, I just wish there was something I could put into someone else's hands and say "this is what I need/this is what I'm feeling" instead of exhausting conversations

Can there just be a required course friends and family have to take when you get diagnosed with cancer? I appreciate my family so much, I really do, but am I the only one that ever feels like people treat my disease like their own problem?

I'm not good at speaking up on my own behalf, but when I do, I get met with how ungrateful I am. I live with a couple of family members, and my child. My family members go to church and talk about my disease and get condolences from their friends and then come home and get impatient on my treatment weeks when I'm sick and can barely move. Then when I'm on my "well weeks", they're up my butt micromanaging everything I do and insisting they need to do it for me. When I'm sick and literally crawling up the stairs, they complain and huff and puff about me being in the way trying to scrape myself a bowl of cereal together but don't offer to help and then complain about how maybe I don't need this treatment because it's making me feel ill.

Then I have my kid's dad (divorced but friends) taking advantage of me being sick as though I'm a captive audience to take dozens of phone calls to hear him complain about everyone and everything, but then the moment I'm not receptive to it, I'm told I'm problematic.

Like, I wish there was just a class about how to handle being around a cancer patient. How to ask if we need help, what's not helpful, what it feels like to go through this and that it's not all about them and how they feel about MY disease. I feel like I'm spending all day trying to cow to everyone's feelings about it, while I feel that shortened clock of life spinning its wheels ever faster in my head.

Sorry for the long rant... I'm just emotionally exhausted today. What should have been a wonderful day with my kiddo got smeared with everyone else's negativity and just ruined it.

Hi there! Okay, so I was stage 2 in 2020, metastatic in 2023, NED for three years and in those 3 years I was on Herceptin/Perjeta and then transitioned to Phesgo and tried to do Ibrance but had a nightmare of a time filling the script.

Anyways, now I've had five treatments of Enhertu and went from having mets in my shoulder, hip, thirty or so in my lung lymph nodes, and three in my brain to having nothing visible on PET except a sliver in my shoulder that is "dying" according to doc. I was blown away by this.

My doctor says traditionally the formula says Phesgo after Enhertu, but we will talk again in a couple of months. I've already done Phesgo and since it eventually came back, I'm unsure if I can do it again. There's also an option of staying on Enhertu.

My problem with Enhertu is severe, almost unresolvable constipation for a week after treatment, nausea for 8 days, 3 of those in bed. That's on the "middle" dose. My WBC and neutro counts keep going a little lower and not coming all the way back up each treatment.

My question is...has anyone moved to the smallest dose of Enhertu or spread out treatments and had any success? Gone back on Phesgo and doing okay?

I'm stoked about my prognosis but am struggling with what treatments to talk to doctor about once we finish another couple months of Enhertu and we have the talk he says we are going to have about "what's next". I want to stay alive but maybe have some ability to work or enjoy life between treatments and I don't see that happening on longterm Enhertu at this decline.

So, I've just had my fourth Enhertu treatment. My body is very hypersensitive, and I had to be stepped down from the initial strength dose-- it landed me in the hospital with severe nutrient loss, endless vomiting, and a bottomed- out immune system. My second treatment stopped my bowels for eight days and resulted in an ER trip.

Now I'm navigating the treatment a little better, but each dose lands me on the couch for about 9 days. I'm rotating Zofran and Compazine during the day, and Zyprexa at night. I'm 40 years old and I've got lesions in my spine, shoulder, hip, 3 in my brain and some vague lights in my lung lymph nodes on a PET scan. I've done radiation and it appears to have seriously helped, but I'm indefinitely on Enhertu (was on Phesgo for 3 years prior) until that stops working.

My question is: what can I do to make the process easier, the sickness shorter, something? I've seen some people say walking helps, and so many people who have shorter sickness or very little side effects. I know every body is different, but my doctor really has zero suggestions and I'm tired of spending so long sick in bed just to turn around and get sick again.

I'm 40, had stage 2 breast cancer in 2020, metastatic in 2023 and then no visible disease, back again in 2026.