Posts by Angela Wright

ruggedfox11 said:I’m just hoping everything turns out okay for you guys... The pulmonologist thinks the progression isn't massive, but she doesn't want to take any chances, so we're starting Hycamtin.

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Hang in there! We've got to keep fighting!

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ruggedfox11 said:Tears flow, laughter fades, life isn't some fairy tale... What's the point? Look, I'm not one to sit around and wonder, so I did my homework and dug through everything I could find regarding hoarseness during radiation (it shows up, allegedly as a side effect, both in patient experiences and according to medical literature). I went to his pulmonologist to let her know he’s starting radiation, mentioned he’s scheduled for a CT scan, brought up this hoarseness issue, and asked what we can use to treat it while he's undergoing radiation. Her response? She claims it can't be a side effect of the radiation, but rather that the cancer is pressing against the vocal nerve, and there’s nothing to be done except push forward with chemo after the radiation is finished. Now, you tell me—be smart about how you process that. If that nerve is actually being squeezed, wouldn't it make more sense for him to be hoarse constantly? I’m losing my mind here. I truly, deeply hope she's wrong. I'll find out this weekend when he finally gets a break from the radiation sessions..
Anyone have experience with this?

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Honestly, I don't see why it couldn't be caused by the radiation. It sounds to me like an edema that gets aggravated by the treatment, causing tissue swelling and resulting in hoarseness.
Maybe try inhaling steam with a hypertonic saline solution.

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Scott Davis32 said:Hi there.

My mom has been battling digestive issues, urinary incontinence, mobility problems, and all that mess ever since she recovered from a spinal tumor 40 years ago—learning how to walk again was a whole ordeal in itself.
About six months ago, the abdominal pain started, and over the last few months, she’s dropped about 45 pounds. She ended up in the ER when things got bad, and they ran an abdominal ultrasound. Everything else looked fine, but this came back:
Immediately subhepatic, there is a large, heterogeneous, predominantly hypoechoic mass measuring 11 x 5.6 cm, primarily corresponding to a tumor process in the ascending colon and hepatic flexure.

That scan was from two months ago. Based on those results, the doctor told her it looks like colon cancer and that she needs a colonoscopy to confirm, but she refused any further testing. She signed the refusal forms and they sent her home.
She’s 76, and she’s just wasting away; she can barely walk anymore. For the last two days, the abdominal pain has intensified. We’ve called 911 twice now, and while they gave her an injection for the pain, they wouldn't transport her because they claimed it wasn't an "emergency."
The thing is, she refuses to go to the hospital. She doesn't want to deal with another surgery or go through that cycle again. She’s having suicidal thoughts; she just wants to die at home.
We feel completely helpless. We try to talk sense into her, but nothing works. 😢

Given the suicidal ideation (which points toward clinical depression), she might be considered incapacitated. You should probably check with her doctor about the possibility of an involuntary psychiatric hold or hospitalization. It would also be wise to consult with Social Services.
Try approaching her by framing it differently: tell her, "Look, we won't force you to do anything you don't want to. You said you don't want treatment—fine, we'll respect that. But at least let them help manage the symptoms. Let them give you an IV to ease the pain or help you feel less miserable..."
The main goal is to get her into the hospital first. Once she’s there, you can take it one step at a time...
...Listen, if she's playing games with a tumor, it's very likely already metastatic, so the end result seems pretty clear to me. But that part about focusing on palliative comfort? That's actually worth a shot.

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ironranger4 said:Hey everyone. About ten years ago, my mom was diagnosed with melanoma on her neck. They performed surgery on the site and removed her lymph nodes, and everything went smoothly without any additional treatment—she was totally fine until it flared up again this year. This time, more lymph nodes were involved, though there were no distant metastases found. She underwent an extensive surgery where the surgeon said he "cleared out" the area as much as humanly possible and felt really good about the outcome. Following that, the doctors suggested radiation as a preventative measure to stop it from coming back, but then a second medical board stepped in and decided radiation wasn't actually necessary. Who am I supposed to trust here? Has anyone dealt with conflicting opinions like this? I’m stuck on what to do next... I can't stop worrying that the cancer is just going to crawl back. She's being incredibly careful with her diet and following every single rule a cancer survivor should follow, but the anxiety is constant.

Get a third independent opinion and then you can make an informed decision and act accordingly. Honestly, it might be best to look for one outside our local area. Do some searching on Google using specialized melanoma research centers.

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Michelle Lewis67 said:Hi everyone,
I haven't had a chance to catch up on all the posts here—things are just too busy right now—but I was hoping to find someone who has dealt with multiple myeloma.
My dad was diagnosed four months ago. He’s already finished chemo and is currently gearing up for a transplant, so I’d really appreciate hearing from anyone who has been through this process.
Thanks in advance for any insight you can share.

It’s a rare and incredibly tricky diagnosis, and honestly, that’s about as much as I can say. I don't personally know anyone who has faced this directly.
Keeping my fingers crossed that everything goes exactly as planned for him.

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ruggedfox11 said:stormyfalcon68, we were actually out of town for a bit on vacation. Our radiation treatment is scheduled for July 12th, and we have the CT simulation this Friday. The oncologist brought up the possibility of intrathecal chemo, but we met with the neurosurgeon today and he’s leaning against surgery. He’d rather go the radiation route since he doesn't believe there are micrometastases, especially given that these two spots are on opposite sides—it would be an incredibly difficult operation to pull off.

Anyway, I’ve put together a list of questions for my oncologist. These are just a few of them—if you guys have any other helpful ones or if I missed anything important, please let me know:

How long is the radiation treatment going to last? Specifically, what’s the total dose we're looking at, and how much are they hitting me with each day?

It’s handled on an individual basis, but they strictly follow the established protocols. They'll give you the exact details.

ruggedfox11 said:Side effects—how to handle them, how to dull the edge, and how long they actually stick around. Do they hit you like a freight train immediately, or can they lie in wait?

Aside from fatigue and a sunburn-like sensation, there aren't many significant side effects to watch out for. When it comes to brain radiation, you might see an increase in edema, which can lead to hair loss or headaches, but once the therapy is under control, those usually settle down. Crucially, you cannot put ANYTHING on the treated area. That means absolutely no soaps, no shower gels, no body lotions, and definitely stay away from baby powder. You should wash it using nothing but lukewarm water and pat it dry very gently. If you do end up with burns, look up a recipe for gentian violet solution and just lightly dab the area.

ruggedfox11 said:What’s the actual point of the shelling? Is it just to halt the spread, scale things back, or completely wipe out the target?
How can you actually tell if radiation is working?
Does it actually have to happen, or can we just skip it entirely?
Will the visible fever actually improve or return to normal? And regarding the dead tissue in the brain—is that just going to sit there, or will the body eventually clear it out on its own?

The goal of radiation therapy is pretty straightforward: first and foremost, you want to stop the disease from spreading, and in the absolute best-case scenario, you’re looking to wipe the tumor out entirely.
Once they finish the radiation treatment, they’ll run a follow-up MRI to get a clear picture of how everything looks now.
It’ll show up in some way or another, in one form or another—it just doesn't hit everyone with the same intensity.
Whether or not you get that function back really boils down to one thing: did the tumor strike that specific center directly, or was the area just caught in the crossfire because of pressure from surrounding tissue?
Dead tissue—necrosis—is permanent. Once it's gone, it's gone. There's no coming back from that.

ruggedfox11 said:What about diet during radiation or sun exposure?
-Chemo via intrathecal administration after radiation—is that an option?
-How often should follow-ups happen, and after how long?
-When will we actually see results?
-Any clinical trials for micro-treatments?
-Immunotherapy—specifically Keytruda

For dietary advice, check out Cancer Help UK. They’ve broken everything down perfectly there.
As for the sun, don't go from being cautious to just being reckless. If you want to hit the beach, stick to the early morning or wait until dusk.

Regarding chemo through the spinal fluid, you absolutely need to bring that up as an option and have a serious talk with the doctors about the risks versus the benefits.

You might start seeing some results after just a few sessions, but the real clarity comes after the full course of therapy is finished and you get that follow-up MRI, which usually happens a few months after the last radiation session. This stuff has a long-lasting effect.

Check the link I posted recently for info on clinical trials.

Same goes for immunotherapy; talk it over with the doctor and look into what people are saying on international forums to get a sense of the experience.

I'm keeping my fingers crossed for you. Your husband is a hell of a fighter, and so are you. You both deserve so much credit!

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Ashley Robinson3 said:Hi everyone, I'm reaching out regarding my mother-in-law. Over 10 years ago, she was diagnosed with transitional cell carcinoma of the bladder. Right after the diagnosis, she started BCG therapy, which kept her doing well for years. However, about five or six years ago, she had a recurrence. Since then, she’s dealt with several relapses and surgeries; the most recent one was 18 months ago, where they had to remove her bladder, ovaries, fallopian tubes, appendix, and uterus—not to mention they already had to remove one kidney during a previous procedure. Since then, she’s just been going in for blood and urine checks, and the doctor told us to just reach out if anything changed, especially considering she's 80 now. For the last couple of months, things have taken a turn for the worse. She's lost her appetite, fallen into a depression, and is refusing to see any doctors until my husband finally had to force her to go to the ER because she was completely incapacitated. At the hospital, they found a shadow on one of her lungs. They gave her an IV, which seemed to perk her up enough for her to start eating again, but now she’s refusing a bronchoscopy. Being a healthcare worker herself, she’s convinced it’s a metastasis. She insists she’s far too weak for any kind of treatment and doesn't want to spend her remaining energy being exhausted by more medical intervention. My husband can't convince her otherwise, and honestly, I get where she's coming from. I know things are grim, and I worry that chemo would just drain what little strength she has left. It makes you wonder if there would even be any benefit. Then again, if you don't try, you'll never know.
I'm not even sure what I'm asking here—maybe looking for some shared experiences or advice. Should we respect her wishes, or should we keep pushing her to undergo the bronchoscopy? Personally, I think we should support her choice. She’s lived a full life, and since the disease progresses slowly at this stage, I doubt aggressive treatment would actually improve her quality of life. I'm trying not to overstep too much and am letting my husband handle the direct negotiations with her, while I focus on just being his support system.

I completely agree with you. If it is cancer, she is a conscious adult with every right to bodily autonomy, regardless of what anyone else thinks. Her wishes and her decisions deserve to be respected.

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Jacob Williams7 said:The results just came in:
Diagnosis: Malignant melanoma (superficial spreading type) T1aNxMx
A skin sample measuring 2x0.9x1 cm was received, featuring a slightly limited, unevenly pigmented lesion up to 0.6 cm in diameter. Histologically, the growth consists of nests and clusters of atypical melanocytes located within the basal layers of the epidermis and the papillary dermis, but they haven't reached the reticular dermis. The melanocytes clearly show signs of what’s called pagetoid spread through several layers of the epidermis. No mitosis was found in the dermal component of the tumor. The maximum thickness of the tumor is 0.34 mm. There is no evidence of lymphovascular invasion, microsatellitosis, or regression in the sections examined. Dense mononuclear infiltrates and pigmentophages were found at the base of the tumor, while the surface epidermis remains non-ulcerated. The tumor-infiltrating lymphocytes are dense. The described tumor does not reach the excision margins marked by the tissue dye; it is 6 mm from the nearest lateral margin and 9 mm from the base. Histological and immunohistochemical (HMB45, melan-A, LCA) findings are consistent with superficial spreading melanoma T1aNxMx, Clark II, Breslow.
Is there any hope?

I'd say yes, because we're looking at an early stage here with no visible signs of lymph node involvement or distant metastasis.

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silentbison17 said:My mom had her follow-up appointment today after surgery. Based on what I’ve read, the PhD specialist's report looks promising.
Her liver panel came back clean, but the bone scan picked up some activity at the end of her right rib and in her teeth. Because of that, they recommended an X-ray of the 11th rib and a craniogram from two different angles.

The doctor told her it might be nothing, but he wants her to get the tests done before coming back for the next check-up. Honestly, I'm kicking myself because I wasn't there—her sister was. I should have just been direct and asked him point-blank... basically, if they saw radiopharmaceutical uptake in those two specific spots, what does that actually mean? I'm trying not to be a pessimist here, but...

It’s all going to be fine.

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Jack Hill21 said:I need some advice regarding melanoma. My mom had surgery for melanoma on her leg plus lymph nodes about 16 years ago, and everything went fine. She did follow-ups for a few years, and then we all just moved past that whole nightmare. But two weeks ago, she felt a lump on her abdomen, and by the next day, a biopsy already showed melanoma cells. We went through the full diagnostic gauntlet—CT scans, bone scans, lungs, abdomen, tumor markers... eventually, they removed the lump, and yesterday it was sent off to pathology and to a lab in Chicago for analysis. Since Mom spent her entire career as a nurse and knows how to read between the lines, she didn't mince words when asking the oncologist what those scans actually showed. The guy gave her this short, blunt answer: "Nothing." He said the lump is being analyzed, and once that's done, she’ll be transferred to the Mayo Clinic. Everything seemed fine right up until the moment she left the hospital. While waiting for the tissue results, she hands me her discharge papers, and there it is in black and white: multiple lesions on the lungs, some lesions on the kidney, something on a bone... basically, a laundry list of various lesions and changes. 😢 What do we do now? Do we just sit tight for two weeks while waiting for the results? Or should we be pushing for something urgent? Any info would be appreciated...

Those lesions might be melanoma, or they might not.
Until you have the pathology report in hand, you're essentially flying blind.
Right now, those are just spots on an image. They could be anything from inflammation to standard degenerative changes in the bones or kidneys that come with age. Once the official diagnosis lands, then you can actually start questioning the imaging with any real weight behind it.
It’s rare for a doctor to brush something off as "nothing" unless they truly have a reason to believe it. Usually, if they suspect something, they’ll throw the whole terrifying truth right in your face immediately.
Just take it slow and try to stay calm.

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Jacob Williams7 said:Today I got some devastating news—my dad has been diagnosed with 😢 melanoma.
It’s two melanomas: one on his forehead and another on his back. He’s scheduled for surgery on the one on his forehead this Friday, and the one on his back next week.
Does anyone know what the survival rates look like, or does this diagnosis basically mean an inevitable death sentence, or is there actually hope?

So, was your dad feeling upbeat after the biopsy and you finally got confirmation, or is the doctor just suspicious and moving straight to action?
Also, having two suspicious moles doesn't necessarily imply anything catastrophic. If they look sketchy, the best move is to get them out immediately—in that sense, your dad is actually getting top-tier medical care by jumping on this so fast.
If melanoma is caught before it metastasizes, it's handled with a surgical procedure. I'm keeping my fingers crossed that's exactly how it plays out for him. Just remember, the only way to be 100% certain about the diagnosis is through a pathologist performing a PhD-level analysis of the removed tissue. Everything else right now is just educated guesswork and precautionary measures.
There's no need to start the drama before you have the facts.

By the way, melanoma isn't technically a carcinoma.
Carcinomas originate from mutated cells within organs—specifically the epithelial cells—whereas melanoma stems from melanocytes, which are the pigment-producing cells in the skin.
Even though both are malignant cancers, they are distinct entities; they behave differently in the body and require different treatment protocols.

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quietscout85 said:I know this isn't exactly the right venue for this kind of question, but it's the only active one out there.
About a month ago, I went to my OB-GYN because I was dealing with mid-cycle bleeding that lasted for twelve days straight. The ultrasound showed an anechoic cyst measuring 40x26x28. My doctor told me it would likely rupture or dissolve on its own and asked me to come back for a follow-up in ten days.
Well, at the follow-up ultrasound, they found a hypoechoic ovarian cyst with opalescent contents, now measuring 43x26x25. I had my tumor markers done that same day—CA-125, CA 19-9, CA 15-3, and CEA—and everything came back normal. My Pap smear was also fine. How is it even possible for a simple cyst to change that much in such a short window of time? Should I be panicking? After the last scan, the doctor said this looks like a different story we need to deal with and wants me back for another ultrasound after my period. She mentioned if the results are the same, she’ll be sending me to the hospital. Why on earth would she do that??

It could be an endometrioma, a dermoid cyst, or something along those lines. Usually, an endometrioma tends to bump up the CA-125 levels, but that isn't a universal rule.
In your case, there's a 99% chance you're looking at a benign growth. The issue is that its size and presence might cause some "mechanical" interference with your reproductive system, so they'll probably discuss a procedure to get it removed.
Bottom line: don't stress yourself out; it's going to be fine. Most women will deal with something like this at some point in their lives.

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ruggedfox11 said:He hasn't been doing anything about it because there are "no symptoms," which is the exact same line I got when I was pushing her to get brain scans for the first time. This oncologist is actually suggesting whole-head radiation when there are only two

I wouldn't touch that with a ten-foot pole. There’s zero guarantee that new spots won't pop up right after you blast the entire head with radiation. Once that happens, you've burned through your options—there’s a limit to how much radiation a person can take before it's game over for good. Plus, trying to tell the difference between radiation necrosis and tumor necrosis later on? It's nearly impossible. So, you do the math.
If neurosurgeons have the skill to wipe out two targets using a Gamma Knife, then that should absolutely be the primary move. You can always deal with broader radiation later if you have to.

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ruggedfox11 said:This is total bullshit..
My husband is getting his final round of chemo today. Yesterday, they had to scan his head because he’s been in absolute agony for the last week... two lesions in the occipital region. They've pushed back his scheduled chest and abdominal CT scans, and now we're just waiting for Wednesday's consultation to figure out if they'll radiate his entire head, use Gamma Knife for those two spots, or both..

Even before the diagnosis, he kept complaining about his vision getting worse, and now I’m sitting here beating myself up because I didn't take him seriously—maybe we could have done cranial radiation sooner..

Damn these godforsaken diseases. I haven't even processed the news since hearing the results this morning. To her, it doesn't look quite as bleak as it does to me.. Fuck.

Take it one step at a time. Brain lesions and lung issues are incredibly sensitive to radiation. He’ll get through this.
If I were in your shoes, I would absolutely insist on a bone scan right now.

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silentbison17 said:🙂

I am so sorry to hear that....

My mom just had surgery. The surgical diagnosis was a neuroendocrine tumor... now we're just waiting on the pathology report. How long does that usually take?

About ten days.

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Robin Diaz4 said:Hey everyone,
my dad passed away... it’s hitting me hard, like God didn't give us a fighting chance at all...
I want to thank you—all of you, whether we've actually met or not—for the advice, the help, and the support when things got heavy. You know how much that truly means.

To anyone else out there fighting their own battles, I'm rooting for you with everything I've got!
I'll drop back in once I've had a moment to collect myself and write something meaningful; maybe it'll help someone else down the road.
Sending love to you all.

I am so sorry. Please accept my deepest and most sincere condolences.
Hang in there. Things will eventually settle. Lay him to rest in peace.

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silentbison17 said:I posted a while back about my mom and her ocular melanoma, but nobody really responded—not that it matters now. She’s heading into surgery tomorrow. The tumor is just too massive for radiation, so they have to remove her entire eye...

Just keep your fingers crossed that everything else stays clear... I don't think chemo will be an issue, but I just hope we aren't already too late.🙂

Man, I am so sorry, I missed your previous post.
A friend of mine had the exact same thing with her husband, and he ended up losing the eye too. I don't know the specifics since she kept things private, but he passed away about five years after the diagnosis. I can't say for sure if that was the direct cause, though.

ruggedfox11 said:I can't bring myself to go to Spurius... none of them really grab my attention. My brain is stuck on one guy who’s the only one in the US performing surgery on centrally located tumors; the second one is already handling microcellular stuff; the third works privately at Radiochirurgija (we could probably reach out there to see if they have any openings); and the fourth is just a family friend I've known forever.

But I'm thinking about playing on their egos—you know, like, "if you're actually the best, then step up to the plate and prove it." I know surgeons live for that kind of validation.

Good Strategy

ruggedfox11 said:Now that's an interesting point...
I used to think getting into thoracic surgery was the hardest part of this whole process. Today, though, I’m just plain fed up. Between this heatwave and the fact that there isn't a single opening for a CT scan anywhere in sight, I finally snapped. I decided to start dialing around Washington, D.C., looking for specialists who actually handle microcellular cases. And you know what? I check their databases only to find everything is wide open—they tell me to just email over my complete medical records to some random address. Oh, fantastic. Just great.
I get home, absolutely livid—and trust me, I have never once pulled strings in my life—so I call my sister to see if she can pull some favors and get this friend of mine scheduled for a CT scan. Since one of the top thoracic surgeons in San Francisco is a close family friend, I casually bring him up. She shuts me down immediately. She tells me neither he nor anyone in Washington, D.C. can help, because everyone here in San Francisco handles their own stuff and his position isn't high enough to matter. She basically told me to just call him myself. Apparently, since she’s the head nurse on the pulmonary ward, she thinks she runs the whole show.
I’m asking myself: who can you actually trust? Do you go with some random person recommended by a stranger, or do you stick with a close friend?

The guy who's being dragged along by all that fake hype.

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dustyscout8 said:Hey everyone, I know this is a heavy topic to dive into... Does anyone happen to know anything about this new cancer drug called Keytruda? Apparently, it’s being used to treat all sorts of cancers regardless of where they are located, specifically for people with a high number of mutations. Does anyone actually understand what that implies? Somewhere it mentions a 15 $0.00 per pill rate... For instance, it says here:
https://www.mayoclinic.org/diseases-conditions/cancer/overview/ycsc-20374612

"Cancer" isn't just one single thing; it's an umbrella term for a massive spectrum of malignant diseases including carcinomas, lymphomas, leukemias, sarcomas, melanomas, and brain or bone tumors. They are fundamentally different because of their cellular makeup. Take carcinomas, for example—which are the most common and widespread—they originate from the epithelial cells of organs. Because of that, treating them is a completely different ballgame compared to treating a brain tumor or a sarcoma, which stem from mutated connective tissue cells. Now, every one of these types has its own specific subtypes and unique mutations. Some biological mechanisms are similar enough, though, that researchers try to target those shared pathways to block them, essentially buying our immune system enough time to step in and wipe out the tumor itself."
That’s great news, but let’s be realistic: because the biological differences are so vast, there will never be a "magic bullet" cure that works for every single type of cancer. The only universal factor we can leverage to keep things under control is our own immune system.
When it comes to using this specific drug—specifically expanding its application and proving it actually works—we need large-scale, randomized clinical trials. Right now, the only way to legally access this treatment outside of its FDA-approved indications is by enrolling in those clinical trials.