u/carvingmyelbows

I’ve been dealing with this cancer for 2.5 years and I’ve had bone mets this whole time that have grown and spread but generally pretty slowly, until now. We had to switch my treatment for the 8th (I think? It’s hard to keep track at this point) time because I developed liver mets, I was on Enhertu. This was like 3.5 months ago. I’ve been on Trodelvy ever since, and my tumor markers have been creeping up with every infusion. My oncologist kept saying that it could just be that it was taking time for the chemo to really start working and that it was normal for a lot of patients.

I finally did a bone scan and CT a few weeks ago (switched from PETs to better visualize my liver) and while my liver mets showed a fantastic response, my bone mets had like exploded. They used to be in my spine, one hip bone, and one rib. Now they’re in my skull, every vertebrae, both hip bones and joints, my tailbone, both femurs, most of my ribs, my neck and shoulders, and my upper arms. I think that’s everywhere but it’s hard to remember. I was like completely shocked by it because my pain hadn’t increased at that point. I have a PET scan scheduled for next week so we can see the SUV max scores and which of the mets are actually new, and which may have been there before but just weren’t visible on the PETs I’d been getting prior to switching to bone scans/CTs. I am fairly certain it’s all new though because of the climbing tumor markers and this huge explosion in pain I’m having right now.

Right, so, last week, I started having increased frequency of pain in my ribs. And my tailbone started hurting when I was sitting or lying down. And it slowly got worse and worse until it came to a head on like Sunday. It’s almost entirely my ribs, my hips, and my tailbone, but it is so, so, sooooo bad. And one of my hips has avascular necrosis from one of my earlier chemo treatments, so I’m extra worried about it, and it’s been causing my entire leg to hurt too and I can barely put weight on it. I’m like limping around and clutching my chest to keep my stupid fucking tits off of my ribs and spending all of my time lying in bed with a heating pad. I have never been in this much pain in my entire life, and I’ve had kidney stones. I’m already on high doses of narcotic pain meds for my usual cancer pain, but this is just a whole other level, holy fucking shit. I keep crying and then having to force myself to stop because the heaving makes my ribs hurt worse.

I don’t know what to do. I tried to get in to see someone at my cancer center on Monday but they wanted to send me to the ER, and I am stubborn and I hate the ER so I said no, and they managed to schedule me for an MRI of just my hips that evening. The results still aren’t back though, and I’m supposed to have chemo again tomorrow, but I’m not meeting with my oncologist for another week. I don’t think I can survive a week like this. I feel like this is like really really really bad.

When we saw that my liver mets had responded but my bone mets looked worse, my oncologist said that even if my bone mets are getting worse, he’d still want to keep me on the Trodelvy for as long as it continues working on my liver. Because my liver can kill me, but my bones can’t.

I do not see how I can possibly live like this though. Jesus Christ holy fuck holy fucking shit this is so fucking bad. I’m not sleeping I’m not eating I’m not even drinking water because I want to have to stand up to go to the bathroom as little as possible. I don’t know how to put into words how bad this is. I feel like my entire chest is being crushed and I can’t breathe half of the time from the rib mets. And the hips are just so fucking persistent, it never ends. It just never ends. I can’t do this. I straight up cannot do this.

Has this happened to anyone here?? Has anyone else experienced the level of intense bone met pain that I’m talking about?? What did you do about it, what the fuck even CAN you do about it??

I am absolutely losing my shit here. This is unbearable. Completely fucking unbearable even on fentanyl and morphine and methadone. Jesus Christ what the fuck I am SO FUCKING OVER HAVING CANCER!!!! This shit is so tired and old, like fuck you cancer get fucked!!! UGH!!!!!!!

I don’t understand how this keeps happening—progression with every different treatment. At least it was always contained to my bones and breast and lymph nodes. Not this time though. This time, I have half a dozen or more shiny brand new mets on my liver. It doesn’t make sense, I was on the Enhertu for less than 6 months and it was working!! The first PET scan with it showed that my mets were reducing in size and the SUV max scores were going down. It was fucking finally the one treatment that did more than just slightly slow progression down. So no more Enhertu, now I get to start Trodelvy on Thursday. Treatment #8.

My oncologist said that the liver changes things. Progression is much more dangerous. It’s the organ that you don’t want to find mets on. Now we have to switch to CT scans, because CTs visualize organs better than PET scans do and the bone mets are basically just background noise now. We have to do scans every 2 months now to be proactive about catching progression.

And it changes my prognosis. If Trodelvy works, then I’ll have maybe 1-3 years left. If it doesn’t work, less than a year. It’s also worth noting that my oncologist is one of the top experts in the country (and world) on my specific breast cancer type (inflammatory).

This is the first time I’ve actually felt like I’m dying and I’m so scared. I’m scared for my family without me, and my partner doesn’t like my family and has outright admitted that after I die, he’s just going to fuck off and not talk to them anymore. He doesn’t care how important it is to me to know that everyone I love will be there for each other. And my parents rely on me so much, and they’ll be devastated and lost without me, but he doesn’t seem to care about that. He takes good care of me, but he’s so stubborn and oblivious and doesn’t realize how cruel he’s being. It’s destroying me to think about it, like I feel so helpless and useless and I hate it. I hate it and I don’t know what to do.

And I’m angry. I’m so, so angry. I want to see my adorable niece grow up. I want to see the world overall break free of fascism and start moving in the right direction finally, I want to see technology continue to grow. I want to see the new seasons of my favorite shows and read the new books in my favorite series. I want to be able to reopen my fiber arts business that I had to close down when I first started chemo, I thought it would be temporary. And the worst part is that I had to close down because it was too successful to keep up with during chemo, it wasn’t even just some side hobby that didn’t matter, it was thriving. Something I built on my own was thriving. People still ask me when I’m going to reopen. None of this is fair. Everything is being taken from me.

I’m so scared too. I really don’t want to die. I’m 36. I’m young.

I’ve been part of a program for cancer patients to mentor other newly diagnosed cancer patients. I had this mentee, Jess. She was diagnosed toward the end of her first pregnancy, stage 1. She had the mastectomy 2 days before giving birth. Then they did a scan a few hours later and suddenly she was stage 4. And then from there, it all moved so fast. She passed away a few months ago and left behind her baby girl, less than a year old. I can’t stop thinking about Jess or her beautiful daughter. Why does this shit happen??

Fuck, I’m so scared. Even in the best case scenario, I only have a few years. My cancer has just been so aggressive. Inflammatory, ER+ HER2 low. I don’t understand how the Enhertu was working so well at first and then suddenly my liver is covered in mets.

I just don’t know what to do. What am I supposed to do?? It’s killing me to see how devastated my family is. My parents divorced a few years ago and they’re still close with one another but they’re both so isolated now. My mom has MS and needs a lot of help, and my dad lives in the middle of nowhere and needs knee surgery that he won’t get because he’s taking care of his elderly cat who’s nearing the end. My partner lost his job over a year ago and just made taking care of me his job. We’ve been together for 14 years. And there’s also the fact that I’m insanely angry at him for how he treats my family. My niece is almost 7 years old and the most wonderful human being on the planet and I want more than anything to get to see her grow up. Everything is so complicated.

FUCK. This sucks so fucking bad. Does anyone have experience with liver mets? Or Trodelvy? Or being given a shit prognosis? Does anyone have any advice? Words of wisdom? Anything?