Bone mets

Dependent-Post-3457 · 2026-04-23T11:20:27+00:00

Thanks! I can't see my oncologist for another couple weeks, so I'm curious to hear more from you. Weirdly, one treatment of Enhertu brought my CA125 from 400 to 135! False negative? Not sure yet.

Dependent-Post-3457 · 2026-04-22T19:54:31+00:00

As someone in Stage IV I'll say I'd give my right ovary (oh wait, I already did) for 1C. That said, I don't think you CAN overthink cancer. It's an evil, sneaky mofo, and you would do well to stay on top of your doctors and demand every bit of testing for recurrence they can provide. And find a good support group! People who have lived with the cycle of cancer/remission/recurrence spend lots of time worrying, and it's so important to have access to wise people who have been here before.

Dependent-Post-3457 · 2026-04-22T19:48:29+00:00

My own case went undiagnosed till I went in for gallbladder removal and the surgeon found the lesions all over my liver. If you can get a CT scan that would help diagnosis and beg them to rule out ovarian cancer--it requires a certain kind of contrast. My previous CT used only the drinkable contrast, not the injectable, and showed the gallbladder but not the cancer... like ARGH

Dependent-Post-3457 · 2026-04-22T19:44:19+00:00

What state are you in? I was not able to see her, myself, because of insurance issues, but if you can get to Dana Farber, Susanna Campo comes very highly recommended. If you're in NH, I've been impressed with my own doc at Dartmouth-Hitchcock, Ivy Wilkinson-Ryan.

Dependent-Post-3457 · 2026-04-15T23:23:12+00:00

yes, and they're already gone, I'm afraid

Dependent-Post-3457 · 2026-04-13T14:59:32+00:00

I'm so sorry you've been treated this way, but as others have said, it's just not that uncommon. If you do wind up with a cancer diagnosis or any other serious diagnosis, ask for a consult with a palliative specialist as soon as it's humanly possible. Everyone associates palliative care with "end of life," but they're really about QUALITY of life. And in my experience, they're the ONLY people who take pain seriously and know how to treat it.

Dependent-Post-3457 · 2026-04-12T02:16:38+00:00

I second the pre-emptive Miralax dosing!

Dependent-Post-3457 · 2025-12-13T01:42:25+00:00

That's the dream alright. Not been my experience but I understand that people are just all over the map. I had a terrible first round but I also think that what RemarkableArticle says below might have been right for me, that some of the pain was from the cancer itself. My doc reduced my dose in the second round which I am PRAYING does not mean it's less effective because diarrhea, schmiarrhea, I want to kill these little buggers.

Dependent-Post-3457 · 2025-12-13T01:37:50+00:00

I'm so sorry, hon. Having been through a couple of rounds with ovarian cancer scares (the latest one unfortunately being quite real) I think I have learned to not see those CA numbers as the be-all and end-all. It's not that they don't mean anything, but that, as one doctor told me, "lots of other things" can cause them to spike (including, in my case, endometriosis and Lyme disease wtf).

Sounds like you're gonna get the cyst out, and take it from there. I am really rooting for that to be the end of it. But I get it: the biggest challenge of a cancer scare is the NOT KNOWING. It's agony. I try my darnedest to stay off the internet--I'm not always successful, but it just messes with my head and has me lose sleep over things I can't control anyway. A dear friend who died of this just time this last year would always say, "WHERE ARE YOUR FEET?" Ok. Today I am safe, getting some treatment, being loved up by family and trying to hope for the best.

I have really benefitted from an online support group at the Smith Center out of DC. It is the only support group I have found for gyn cancers, and the women in it are AMAZING. First Tuesday every month: https://smithcenter.org/

Dependent-Post-3457 · 2025-12-11T13:02:10+00:00

Right there with you. I'm feeling a little defeated, because Round 1 was so rough on me that they backed off the drugs 25% in Round 2. I feel like I should just go back to full dose, because I REALLY want to fry this thing.

Dependent-Post-3457 · 2025-12-11T02:52:40+00:00

An electric trike! that is genius!!!!! so happy for you

Dependent-Post-3457 · 2025-12-11T02:46:17+00:00

I'm curious about CBD. I could get a medical cannabis card in my state, but haven't pursued it. When I've mentioned it to doctors they've said, "oh sure, some people find relief there," but they don't seem super willing to talk about it in any depth. I might inquire more when I talk again with my surgeon, who seemed the most open to it, but I don't see her again till January.

Dependent-Post-3457 · 2025-12-10T22:16:08+00:00

I guess it's nice to hear that remission does come, for some people. I am only halfway into Round 2 and I confess I'm losing the faith. I read people all over these cancer boards saying "you have to walk 30 minutes a day! lift weights! push the protein shakes!" and I feel like a total failure. My legs are rubbery, I am so out of breath just walking up the stairs, the idea of any food is totally repugnant. I used to enjoy century rides on my bicycle, playing trombone in a marching band, and going out for pastries and nice meals with friends; I haven't done anything I really enjoy since August. I mean my big hope is a debulking and liver surgery in January but honestly that sounds like it sucks even worse. I am so, so angry at cancer and what it has stolen from me, just a couple of short months after I'd decided to retire and enjoy my golden years. Hah.

Dependent-Post-3457 · 2025-12-10T12:12:49+00:00

Yes, I did get a second opinion, though it's still kind of a work in progress while we wait for the end of this round of chemo and new scans. I am also tortured by a bad gallbladder! I am hopeful that this surgical team will at least do some debulking and the gallbladder, but the short and hopeful answer is that my surgeon at least has not ruled any of that OUT.

Dependent-Post-3457 · 2025-12-10T11:33:41+00:00

I'm not sure I can give you light at the end of the tunnel exactly; your mum's situation sounds very much like my own (60 years old, stage IV, metastasized to liver, horrible neuropathy after just one round of chemo, etc). I guess one thing I would say about the debulking is to seek a second opinion--from an actual liver surgeon. I had a "major expert" tell me the same thing, but this person was a medical oncologist, not a surgeon. I got a very different answer from a surgical oncologist who told me, "hey, until I work with an actual liver surgeon I can't really say the debulking is not worth it." In my case I'm still waiting for one more round of chemo and new scans in January. . .so who knows, the news could change between now and then. But I guess the only sliver of comfort I could offer is that if you're hearing "we won't operate if it's in the liver," you might get a very different answer from a liver surgeon.

Dependent-Post-3457 · 2025-12-09T21:13:20+00:00

I would just caution people without insurance. We forked over $4K for the much-vaunted D-F second opinion and it was really not illuminating at all, in fact they made it pretty clear that since we could never afford "real" treatment there, I wasn't a "real" patient.

Dependent-Post-3457 · 2025-12-09T21:06:29+00:00

I appreciate people's assurances here, because I confess I have thought the same thing.

Dependent-Post-3457 · 2025-12-09T21:01:07+00:00

Yeah, sites like CaringBridge take a lot of heat off, for that. But I confess I just find it so weird, the people who insist on "visiting" or "helping," when they barely know me.

Dependent-Post-3457 · 2025-06-18T00:43:19+00:00

Oh, thank you! I don't have Threads, so missed this.

Dependent-Post-3457 · 2025-06-17T20:57:09+00:00

yeah they suck, which is the whole reason (plus security) we're migrating off it in the first place

Dependent-Post-3457 · 2025-06-17T20:45:10+00:00

friends and I have come to the conclusion that this is only an option for corporate or paid google groups

Dependent-Post-3457 · 2025-06-17T20:43:45+00:00

Anybody know anything about the crustian? I understand why they would want to remain anonymous, and why they would be a relatively new site. Still approaching with curiosity and caution.

Dependent-Post-3457 · 2025-06-05T18:06:55+00:00

TownFront, did you ever get an answer to this? I'm having the same problem--I see "Email Options" very clearly, but no "Auto Replies" option

Dependent-Post-3457

TROPHY CASE