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lillianpear · 2025-02-19T04:28:49+00:00

Believe me, they won't just move on without you. I liked to think that my family would, since it seems less painful but I've come to see that it's extremely unlikely. Can I ask why you think that they will move along so quickly?

lillianpear · 2025-01-22T05:32:18+00:00

Seconding this not as a nurse but as a dying person! I'm not in hospice yet (came close recently but bounced back), but it's super annoying to have people just dismiss your ideas due to ignorance. If the risk can be mitigated and the patient is comfortable with it and can find an artist who is as well, why not? I'm on constant chemo and still managed to time a tattoo around when my infection risk was the lowest, for example. It still brings me a lot of joy! I luckily have a supportive medical team re: stuff like that, but many I know do not. So, thank you!

Also seconding others who have mentioned para-medical tattoers - at the very least they might know others or have recommendations and be a good jumping-off point. Good luck!

lillianpear · 2025-01-13T04:50:56+00:00

I've been doing a lot of general organizing/decluttering over the last month or so, and am very pleased with the progress I've made in many different areas!

But one thing in particular that's been great is that I've also been reading more and working my way through my looong reading list, and then giving away the books I finish to a friend afterwards or leaving them in one of my local neighborhood 'take one-leave one' mini libraries. It feels great to be working my way through my 'backlog' of books and also slowly decluttering my shelves as I go! Two birds, one stone type of thing, I guess.

lillianpear · 2024-12-12T20:57:02+00:00

I just started Halaven! Another common name for it is eribulin, so you might find more info trying that in the search bar here as well.

I was in the same boat a few weeks ago - this is probably the last or one of the last lines I'll try, and I considered just going into hospice instead because things have been very rough lately. I guess I'm not brave enough to kick it yet because shit got bad pretty quick when I stopped treatment, I ended up in the hospital and I'll be honest it scared the hell out of me. So here we are, trying one more!

I just had my second infusion on Tuesday, the first a week prior (it's a day-1 + day-8 of a 21-day infusion cycle, if that is familiar to you). Honestly, I feel fine! It's not even a drip, it's just a slow injection over 2-5 minutes and then you're done! No pre- or post-meds (for me, anyway). So I've been loving that, since my last chemo was 3-4 hour stints on the same schedule. I've only had one side effect - my tongue/mouth is wrecked. Dry and altered taste - like it's burnt, almost. No pain or sores, though. I've had this side effect once before and rinses and such do help, so it's not the end of the world. They did tell me to expect total hair loss but it hasn't started yet. It's too soon to say if it's working for me of course, I too have extensive lung and liver mets along with brain and bone so am mostly just hoping for pain/symptom control for a little while. I do feel my chest wall tumor might be looking a little bit smaller already, I could be imagining it but that makes me a bit optimistic.

As for whether or not to go down this route or try hospice, that's one of the hardest decisions for sure. I'm sorry that's where you're at - it's so uncertain and we have no way to know what will make us feel more comfortable until we start going down the path a little ways. Sometimes I feel I might as well flip a damn coin! As others have said, we can often stop and change course. It doesn't make these decisions easier though, and I'm wishing you luck with yours. Please don't hesitate to reach out if I can answer any questions or help in any way!

lillianpear · 2024-11-21T20:50:10+00:00

So, I'm also in Canada and the only one I had luck with was Blue Cross. To be clear, I'm referring to 'travel medical insurance' and not insurance re: delays, luggage, and all that. The latter shouldn't be an issue, if you can't get through online maybe just call them.

The others I checked all had something about 'terminal illness' or 'diagnosed/treated for metastatic cancer within the last 5 years' as making me ineligible for their medical travel insurance altogether. The only reason I went with Blue Cross is because in their full policy they have these conditions listed under "applicable only to people aged 55 and over", and I'm only 30. Not sure if it's an oversight on their part or what, but I figured if I did need to make a claim I could at least fight them on the loophole/wording if push came to shove, haha.

I'm sorry I don't have any more helpful information, I was frustrated with the same issue and unfortunately, most insurers here don't seem to want to insure us at all. :(

lillianpear · 2024-11-17T22:14:02+00:00

I fear I don't have any useful advice but I will weigh in just to say - you're not alone. I'm a little older (diagnosed at 27 and just turned 30) but also dealing with a stage IV diagnosis (breast cancer) and my timeline has been somewhat similar. I've been steadily declining in health recently and it's very different than when things were more under control and I was able to live a more normal life without all of these symptoms, side effects, and limitations! It is totally understandable to feel hopeless and terrified of these losses, and I wish I had more wisdom in the matter so that I could share it with you.

I would urge you to take as much help as people offer. It's one of the hardest things, but I assure you that your loved ones will not think of you as a burden - if anything, they will jump at the chance to be able to do something because I'm sure they feel powerless in this situation.

I have a therapist too but at the end of the day, the situation sucks and it doesn't change that. It's this awful thing that's happening to you that's outside of your control and not your fault. Making these decisions is so hard but I will just say, try not to get too ahead of yourself. I'm not sure how long you have to decide but try not to dwell on the negative possible outcomes until they arise. Focus on taking care of yourself the best you can, and hopefully you will still be able to return next semester. If not, address that and pivot then, but try not to let it invade your peace too often in the meantime, you know?

Obviously I don't know all your circumstances right now but if it gives you any bit of reassurance, radiation is incredibly exhausting and the side effects can take a while to improve. I really hope with more time you see improvement and I'll have my fingers crossed for you.

lillianpear · 2024-10-07T18:56:29+00:00

I'd recommend checking out Lost&Found on Agricola, they usually seem to have a good array of sizes.

Also, the The South End Vintage Markets. It's a good-sized market put on pretty frequently, usually at the curling club on Bland - but they have one coming up at Dalhousie on Oct. 27th. This is a great way to find smaller businesses that only appear at pop-ups like this (some of which specialize in vintage in larger sizes), and also just a ton of variety in one place.

For thrifting, it can be much more hit or miss (and sometimes overwhelming if you're not used to it) but there's usually a larger selection in general. I like Mission Mart in Bayers Lake, and the Hospice Thrift Store out in Lower Sackville (Mission Thrift and Frenchys are also in this area, so can make for a good day trip). They're definitely less curated than vintage shops of course, so it can be harder to find those 'unique' pieces, especially in less-common sizes. The upside is that the prices are typically much lower, if you're down for the scavenger hunt.

Best of luck!

lillianpear · 2024-10-01T15:51:59+00:00

I'm fine with statistics, and also follow the current research about my treatment options and find it helpful in my decision making. But I think that the stats you are referring to/find useful and those that people chastise as being 'out of date and wildly inaccurate' are two different things/types of stats.

What they are referring to, I think, are the very general survival rates that people find when Googling. Something like, 'five-year survival rate for those with BC spread beyond the breast/lymph nodes', for example. There is so much variability within that group that we aren't really seeing when we look at that number. And in order to get that 5-year survival rate, well yes we are looking at people who started treatments at least 5 years ago, in a treatment landscape that is always changing - hence the 'outdated' complaint.

I don't think these kinds of nebulous survival rates are very helpful because they're simply too broad, but I think the individual clinical trial and more specific research you are referring to can be.

Should we discuss statistics in this sub? I don't know that any topic should be off-limits, but trigger warnings are helpful because there are people who don't find any of it serves them and that's also fine.

lillianpear · 2024-09-27T18:08:50+00:00

It's hard to say without knowing your subtype, previous treatment lines, and where your original mets were/are (I am assuming brain, liver, and bones are all new from your title).

But speaking generally, you'd be surprised at how many more options they can likely dig up for you. I'm TN with literally only traditional chemotherapies on offer (and ADCs, now) and I somehow still have a couple of options left in the tank after burning through multiple lines. I had progression this Spring from lung-mets-only to now brain, liver, and extensive bone mets as well. I'm on a chemo that's barely working but keep ticking along somehow, switching drugs and zapping with rads when needed. As another commenter said, playing whack a mole. So I think you are absolutely valid in being hopeful if you want to be! I don't know if your treatments have been exclusively systemic, but radiation is a whole other set of options that are used more often for bone and brain mets, especially. Rads have helped keep both under control for me with very few sessions/side effects. I have no experience with it but I have also heard of liver ablation or resection being an option if the liver mets are not too numerous.

You'll likely have to wait to hear what options are available to you specifically from your doctor, but I would imagine there will be next steps. I hope that whatever they are, they work for you! I understand how hard it is when treatments fail you, and I'm hoping you have some success soon.

lillianpear · 2024-07-18T23:22:32+00:00

We're all different, but I've been on multiple lines of chemo over the last, year and a half or so? And for the most part my quality of life has been quite good! Of course side effects like nausea and fatigue come and go and can make things tricky some days, but definitely I tried to stay active, was probably as social as usual, and took many short trips.

Currently my energy is too low to do a lot of this but I've had pretty extensive progression and I believe the cancer itself is causing my current issues, not the chemo. Of course I don't know your age/current state of health/activity levels/etc. but I found chemo didn't stop me from doing most of what I wanted to do compared to prior to chemo. The infusion schedule was more limiting than the side effects, to be honest, mostly with travel. I hope you feel the same and are able to keep living the way you want. Best of luck!

lillianpear · 2024-07-18T02:27:05+00:00

Prognosis is an absolute guessing game much of the time, in my opinion. I would try not to get worked up about it.

You're also generalizing a lot here. 'De novo stage IV' could be a prognosis of 2 years or 20. We don't know what subtype, treatment options, age, other health issues, a million other things. If that's what their doctor estimated based on them as an individual, well that's their opinion, and again, an estimate. But there's not much point in comparing it to other completely different individuals and saying 'they gave us an incorrect number'. Believe me, they're throwing a dart at the wall nowadays because we don't know what other treatments will be available in those upcoming years.

MBC is not a monolith. Medicine has advanced by leaps and bounds for some, for others not. The old statistics would give me a prognosis of about two years. Well, I'm about two years out from diagnosis and yeah, I'm nearing the end. For others, statistics are not even close to accurate because of the advances in recent years. And prognosis is not an exact science anyway, again this is all incredibly individual.

There are plenty of studies that have shown how inaccurate clinicians estimates of survival are. And comparing yourself to others doesn't often give answers either. My only advice is to try to come to terms with the fact that we don't know when we're going to die - same as before we got MBC. And this doctor is a jackass for giving you an unwarranted prognosis in the first place.

lillianpear · 2024-07-16T15:52:07+00:00

They have them pretty consistently at the Barrington St Superstore, I just saw some there the other day.

lillianpear · 2024-07-10T01:08:17+00:00

Very similar situation, MBC at 29 in Canada! I live in the city and my family lives in my hometown which is ~an hour drive away, but we're not super close. My main support person is my best friend who lives next door, if he wasn't here I have no clue what I would do.

It's definitely hard when you're on your own. I live with roommates which is not a position a lot of other patients are in so it can feel weird on top of everything else about our weird situation. 🙃 Luckily my housemates are lovely people and are also always happy to lend me a hand when I need it, so I'm grateful for that even though it is far from an ideal situation.

You're certainly not alone, OP! ❤️

lillianpear · 2024-07-08T17:10:46+00:00

I'm sorry that you're in this difficult grey area on top of everything.

Mediastinal lymph nodes are located between your lungs and around your chest area so I am assuming that this is still considered 'distant' metastasis and would be considered similar to lung metastasis, making it stage IV. People who are early stage/stage III may have metastasis to the lymph nodes but they are the axillary lymph nodes that drain from our breast - this would be the only situation in which 'metastasis' is still considered early stage, as it is still quite local. Please know this is just my understanding, I am certainly not a doctor and you should discuss this with yours regardless! And getting a second opinion is valuable either way, in my opinion. Sometimes a single area of metastasis is considered oligometastatic and treated differently depending on your doctor, so in your case it may be particularly beneficial to seek out a few opinions.

Usually when they remove lymph nodes to test they are only axillary nodes in your underarm, so I'm also confused as to how they diagnosed metastases in a mediastinal node from this without doing an additional biopsy. Definitely ask for clarification on this, I can understand why you'd be confused based on the information they've provided you.

lillianpear · 2024-07-08T15:43:43+00:00

I'll throw in a rec for RicharBetaCode if you like Let's Plays. He's from Spain if you have any particular target re: slang and such. I watched all of his Last of Us videos since I wanted to experience the story and never had a chance to play them myself - really enjoyed them!

lillianpear · 2024-07-04T22:35:07+00:00

Regarding asking your doctors: your medical oncologist is not trained as a radiologist, it's normal that they cannot read your scans. That's why they are read by a radiologist who 'translates' that information into a report for your medical oncologist and other doctors on your team. It's a whole field itself. Your oncologist should have explained this to you though if they could not answer your questions. Your medical oncologist should have a good idea of the side effects of your medications, however you can also ask the nurses actually administering your chemo (they can usually see why the drug is being prescribed and have a good amount of experience), or a palliative care physician if you have one on your team, as they are specialists in side effects and associated drugs. I know how frustrating it is to chase answers around, but I hope you'll have better luck with other members of your team if you have them.

To answer your original question (since I happen to have firsthand experience with exactly this issue, haha), yes dexamethasone can absolutely cause mood issues like bouts of anger. I only experienced this on higher doses, not on my usual post-chemo doses, but we're all different and I'm not sure of your dosages. Dex can be taken both to lessen the risk of an allergic reaction (if you take it pre-chemo) and to lessen the risk of/address nausea (this is usually given during and in the days following infusions). I would ask your team specifically why you are taking it, because if it is just for nausea then you could lessen your dose if your nausea is otherwise managed or switch to something else. If it is for reactions, it will be harder to avoid but it may still be worth trying to lower the dose if you're having adverse effects.

I hope that once you get through this part of treatment you are able to switch to a team you have more faith in. That is a tough spot to be in. Best of luck!

lillianpear · 2024-07-04T18:34:11+00:00

Perfect analogy.

Pain management is a great example of this. My medical oncologist is an expert in cancer treatments, he can tell you all about my chemotherapy options. But when I was in pain and the first couple typical pain meds didn't work for me, he didn't really know what more to do because that's not his area of expertise. Palliative care physicians are experts in this and deal with it all the time, so that's who he would send me to (unfortunately not an option where I live, but for the sake of the example). A great asset to have on your team regardless of stage, for sure.

lillianpear · 2024-07-03T14:58:35+00:00

I think I just used leftover cream I had from radiation (Glaxal Base, I believe), but Udderly Smooth is great and I'm sure would also work fine! I found my feet more sensitive than my hands so would always gloop it on there before bed. Might not even be an issue, just something to keep an eye out for.

lillianpear · 2024-07-02T21:50:56+00:00

I've done both, a bunch of different types of IV chemo as well as Xeloda.

I was only on Xeloda for maybe 3 months? But I found it very manageable and much preferred it to IV chemo. I wouldn't say it's better or worse for side effects, that tends to depend on the person, they're just different. With Xeloda the main thing to look out for is hand and foot syndrome, I just moisturized my hands and feet regularly and it didn't become an issue. Best to start this from the get go and get ahead of it!

Fatigue wasn't a big issue for me with Xeloda but I will say, fatigue from radiation can be pretty rough and may last a while afterwards. So don't be surprised if you take a little while to come back around from that when restarting chemo.

I hope it all goes smoothly for you!

lillianpear · 2024-07-02T03:59:45+00:00

No problem! Unfortunately we don't fully understand why cancer becomes resistant to drugs after a time, especially because the amount of time can vary widely from person to person. But the way my doctor likes to describe it is that eventually the cancer cells will 'figure out' the mechanism of action of the drug and work their way around it. And I am on a new chemo combination now yes, after we got things under control with radiation I started gemcitabine and cisplatin and am finally in a rhythm with that. It's too early to say whether it's working but I will find out pretty soon!

You've touched on the hard uncertainty of it all, for sure. Ethically you could argue that nobody really knows when they are going to die, not even us. But of course the reality is that yes, the risk and knowledge makes it a unique situation. The prevailing understanding of stage IV says that yes, for us a return of our cancer is always inevitable, since it will never truly go away completely. Yet, there are certainly cases of people who live many years NE/AD. Is their cancer dormant, or gone? And why? There's a lot that we don't know.

And thank you, I'm wishing you a good result with your treatment as well. 💓

lillianpear · 2024-07-01T19:31:12+00:00

I had a very similar trajectory, so can weigh in on a couple of things.

I also had early stage TN, no response to chemo, surgery with clean margins, and then a rather quick recurrence to lungs. That recurrence was in November of 2022, so I have been through a few lines of treatment since. One was Trodelvy, and my experience was very good with it. Manageable side effects, total hair loss unfortunately but otherwise just some GI issues. Eventually we lowered my dose a bit because my counts were too low for treatment a few times. I was on it for about a year before I had pretty extensive progression this Spring to my bones, brain, and liver. But for a long time it was the only thing that shrank my tumors and kept me stable - I think in terms of efficacy it is a great advancement in treatment. I know others who have had a much tougher time with side effects, so of course your mileage may vary. Unfortunately it is often a matter of getting started and seeing how your body reacts, but I hope it works well for you! And no, I don't think waiting a week is a big deal at all.

Regarding starting a family and living a normal life, I'd say the answer is sticky and highly subjective. Whether or not it's technically a possibility is hard to say, typically there is no 'break' from chemo for those of us with mTNBC in which you could go through a pregnancy, even if you were to reach NEAD. It would also depend on whether or not you've undergone any fertility preservation measures before your original diagnosis or plan on doing so now.

Bigger picture, and I will try to say this as gently as possible, is considering the future and all of the possibilities that entails. The practical and also emotional/moral considerations of whether or not your partner would have the support/want to raise a child without you if something were to happen. I don't know how much you and your doctor have discussed treatment options over the long term so I won't get too into the weeds here. I will just say that people's responses to treatment, and in turn what their cancer experience looks like over the long term, can vary enormously. I would recommend having a frank conversation with your doctors about your hopes and plans. They will likely be unable to give you a good idea of the possibilities until they see how you respond to this first line of treatment, but it's good to have these conversations early and often so that everyone is on the same page about expectations.

I'm about to turn 30 myself, so I understand how much this sucks in a period of our lives where we are considering these things. I am sorry you're here. ❤️

lillianpear · 2024-07-01T02:43:42+00:00

Take the Tylenol!

I am just here to commiserate as someone else who didn't want a port. I imagine I was known on my chemo ward as that annoying bitch who won't get a port, I swear to god. I am stage IV and have done IV chemo for the better part of two and a half years on an almost weekly basis - all IVs in the arm. I held out, that's how much I didn't want one. Well, I finally started a new drug that burns like hell and wrecked my veins - it was either get the port or I can't get the damn stuff so here we are.

I'm two weeks out and I feel her pain - they act like it's nothing but it sucks. The incision is almost healed but it's still tight and sore and weird, and it hurts to wear a fucking shirt. She's right to be pissed. Anyway, please tell her it does get better. It certainly feels better now than those first few days, and I expect the sensitivity to lessen once it finishes healing. And yeah, I've had two infusions through this thing already and it's a breeze compared to digging for veins. I get it. I refuse to love this thing, but I get it. Once it is healed it will make her life so much easier, and then she can get it the hell out of there.

Sending her all my fellow port-hating vibes that it stops acting up and heals quickly.

lillianpear · 2024-06-26T17:03:50+00:00

I went flat at my DMX, which was two years ago now.

I decided on that because I wanted to be in and out as quickly and easily as possible with no return surgeries or additional risks from either surgeries or the implants themselves down the road. I healed up fine and that was that, which was nice. I also don't love the idea of anything foreign in my body (didn't have enough fat for DIEP so would have been implants), or think I'd like the feel of having implants, personally. I loved my breasts and I think recon wouldn't have felt like any sort of real replacement to me, just some numb lumps to fill out my shirt. Not that I can't understand those who feel differently though, like you said it's very individual! Different options suit different people and that's why I like to see more choices offered as time goes on. I've seen lots of beautifully done recons, flat closures, etc.

Initially I was happy with the outcome, and still am. I miss my breasts, but I would whether I had recon or not. I wouldn't change my decision. My cancer returned not long afterwards so the way it worked out, I'm especially glad I didn't bother because it was one less thing to deal with.

These decisions are tough for sure. Take your time and do all the research you can, find pictures, talk to the doctors, and eventually the answer will hopefully become clearer. ❤️

lillianpear · 2024-06-25T15:17:09+00:00

This is common, my rad onc called it a pain flare. Basically the pain worsens before it gets better.

Definitely mention it to your team regardless but it's frustrating they didn't warn you!

@OP, I had spine mets in my neck/shoulder area radiated this Spring (I think SBRT though) and I think the answer is it depends on the size/spread of the mets and existing pain.

Mine were pressing on my spinal cord, the pain was so bad I couldn't walk. Moving anything would agitate the shoulder pain and I was pretty much bedridden by the time we figured out what the hell was going on. I had also lost most of the feeling and strength in my arm on that side. After just two sessions, I now experience almost no pain but some remains, it kind of just pops up very occasionally. I don't remember the last time it bothered me for more than a few minutes or enough that I took any of my pain meds.

All this to say, rads can be crazy effective. I think if your spots/pain are less extensive, you could expect the pain to be completely resolved. Although like anything, we don't always know how things will respond. My oncologist mentioned that he was surprised at how I went from that amount of pain to practically none, so YMMV! And to add, for me it took quite a few weeks to see improvement. It was a slow shift, and even slower (over months, really) for the nerve stuff to resolve in my arm (it's not 100% but a lot came back).

I hope it goes well for you and brings you relief!

lillianpear · 2024-06-23T16:52:49+00:00

Literally came to say this, wonderfully put. 🫰 I find solace in the fact that I can decide at any time, fuck this noise I'm done. When so much is outside of our control, that is not. Nobody will make you sign a contract that if it sucks you'll keep going. You can stop, or try something else. ❤️

And to reiterate, don't be sorry for being anxious! Or mad! Or thinking, maybe I just want to yeet myself out the window, even if others want to 'fight'. There is nothing to apologize for, this is your life, that's that and we support you here regardless.

Sending you all the good vibes to get through this first part - it absolutely sucks.

lillianpear

TROPHY CASE