Posts by Angela Wright

Sophia Peterson69 said:Please, any info regarding ovarian cancer... both ovaries and fallopian tubes have been removed. The surgery went fine, but the marker showed a value around 1000 something, and now the doctors want to remove the uterus too. They say it was caught early as a preventative measure... if anyone has experience with what comes next or the chances of recovery, thanks in advance.

That’s most likely the CA-125.
If it truly was caught early, things should look okay. By "early," I mean the tumor hasn't breached the abdominal cavity or spread to the lymph nodes. Once ovarian cancer becomes metastatic, the prognosis takes a much harder hit. The patient will need regular follow-ups to stay on top of everything.

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Morgan Kern61 said:I'm looking for recommendations for a second opinion from an oncologist regarding a primary tumor in the cervical spine.

Also, if anyone could walk me through the exact process for requesting a second opinion, I'd appreciate it.

Thank you.

Dr. Fedor Shantek at Johns Hopkins Hospital
Besides him, you definitely need a neurosurgeon to take a look. Everyone at Johns Hopkins is top-tier—they were all trained by Paladin.

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Karen Cruz52 said:Hello,

Is there any association out there that helps cover the costs for leukemia patients?

No organization just hands out cash directly—that's not how it works. However, you can work through the Lymphoma Association to organize a fundraiser or a charity drive specifically to raise money for treatment.

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Chloe Bennett5 said:Hello everyone!

I am truly, deeply sorry that things have reached this point.
I’d actually suggest getting a second opinion from another neurosurgeon—maybe someone in New York City, or you could head over to Paladin since they operate privately. When Paladin gives you a recommendation, you can take it to the bank; you'll know you're 100% getting the truth.
When it comes to glioblastoma, the people who manage to hold on the longest are the ones living from one surgery to the next, jumping on a new operation the second a recurrence pops up. As for the fallout? That’s a grim reality you can't dodge, even if you skip the surgery altogether. It’s like watching a slow retreat where the disease systematically claims pieces of your body and your ability to speak. It starts with the legs and works its way up to the arms. At the end of the day, everything boils down to a desperate series of attempts to buy just a little more time.
The second line of defense involves Vincristine and the CCNU protocol. If my memory serves me right, that’s a combination of oral tablets and IV therapy. My mom wasn't a candidate for that specific route given her condition at the time. I know for a fact that Vincristine is incredibly toxic. You really have to weigh the potential benefit of extending life against the actual quality of that life.
This study from the National Institutes of Health dives deep into the complexities of managing patient outcomes during intensive chemotherapy regimens. It’s not just about throwing drugs at a problem; it’s about the delicate, often brutal balancing act between aggressive treatment and the physiological toll it takes on the human body. The researchers look closely at how specific toxicities—the kind that can derail an entire treatment plan—impact the overall success rate. Think of it like tuning a high-performance engine while it's still running at full speed; if you push the fuel mixture too hard, you risk blowing the whole thing apart before you ever reach the finish line. They break down the data on how various side effects influence dose intensity and, ultimately, whether a patient actually hits those critical survival milestones. It’s a sobering look at the fine line doctors have to walk every single day in the oncology ward.

Sending everyone lots of strength.

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Kate Edwards51 said:Hello to everyone else out there going through this exact same thing.

Ten days ago, my dad (65) suddenly lost consciousness and collapsed. The diagnosis was lung cancer with three brain metastases; we’re currently waiting on the pathology report to confirm the specific type of lung cancer.

Dad has partial paralysis on the left side of his body and can't move, so he's staying with me and my husband now.

We have a little one—only eighteen months old—and honestly, this whole situation is hitting us incredibly hard.

Dad refuses to go into a nursing home; he actually threatened to take his own life if we tried to move him there, so right now, we're just taking it one day at a time.

I'm reaching out because I'm struggling with diaper issues. Dad is wearing diapers, and I've tried using Tena products—everything from high-absorbency pads to Tena pull-ups, even doubling up on two diapers—but they still leak heavily. I'm changing the bedsheets three times a day, and the whole house reeks of urine.

I can't tell if I'm applying the diaper incorrectly, or if he's just releasing such a massive amount of urine so quickly that the diaper simply can't keep up.

Does anyone have any advice on what I should try?

I'm not familiar with those specific brands, but my mom used Simex. With men, the issue is often anatomical—the positioning of the genitals causes urine to spray over the top edge of the diaper. For her, leaks happened too, but she always slept on incontinence pads (like the ones used for changing babies, though Simex makes larger versions for adults), which kept the sheets from getting ruined.
By the way, since brain metastases and lung cancer are extremely sensitive to radiation, I'm surprised they haven't addressed that yet, unless you just didn't mention it.
Dad is also entitled to home health nursing visits—specifically seven times a week for 45 minutes each. You should check with his hospital about requesting that. Having a nurse come by to wash him in bed daily and give him a full bath once a week was an absolute lifesaver for me.

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Melissa Peterson35 said:Hi there,

After two months of bouncing from hospital to hospital because of intense lower back pain, my 8-year-old was just diagnosed with Langerhans cell histiocytosis. We've already started chemotherapy.

Any information at all on what we should watch out for, things to buy, dietary changes, or general advice... we would be incredibly grateful.

Ugh, that is a truly rare diagnosis. Even though, if I recall correctly, it isn't technically classified as cancer, it behaves very aggressively, which is why they treat it with oncology drugs. From what I understand, kids over age 2 whose condition is limited to the skin, lymph nodes, or bone have a really strong prognosis.
The most critical thing is ensuring they are treated by someone with actual experience in this.
Regarding immune boosters, whatever you decide to give, stay away from them immediately before, on the day of, and the day after chemo sessions. Use them only during the intervals between cycles.
Try scouring some foreign forums; there aren't many people with firsthand experience dealing with this here in the States.

Nicole Jackson4 said:Hi everyone.

We’re gearing up to fight glioblastoma. My mom (49 years old) was just diagnosed. They managed to get the whole thing removed a month ago. We finally got an appointment to plan out her radiation oncology treatment for September 10th—which is still four weeks away.

We’re being treated at the Ilica Tumor Clinic—what has your experience been like there?

Waiting this long to start oncology feels like an eternity... though they did warn us about the backlog.

I haven't been able to read through this entire forum because honestly, all these stories just crush me. It makes it so much harder to stay strong and try to be the pillar my family needs right now. This whole situation is incredibly heavy, and I'm struggling to wrap my head around what this diagnosis actually means. I'm just furious at God, at the universe... everything.

What hurts most is knowing that the heaviest part of this burden is going to fall on my dad and my sister who lives at home.

I'm constantly reading, searching for supplements, looking into alternative treatments, reading up on RSO cannabis oil, herbal teas from Zepce, and Myko San mushrooms...

Please, share any experiences you have.

Most of my own experiences are documented in the first archived section of this thread.
If you have a specific question, feel free to shoot me a private message.

Susan Watson3 said:I feel compelled to share what's happening with my son, so here it is...
The third biopsy results are back, and the tumor tested negative for everything they could throw at it...
For the first time, the doctor actually showed me just how massive this thing really is... the left lung is completely encased by the tumor, major blood vessels are totally wrapped up in it, and it’s pressing right against his heart... My Superman, who is handling all of this with such incredible bravery, is the only child in America dealing with this specific type of tumor. Our dear Professor Luetic says he’s doing everything humanly possible.
He’s pulling together an impressive team of specialists around my boy...
And despite all that, we might end up looking for life-saving treatment outside of the US...
The hardest part is that I don't even know the name of this damn tumor, and I have no idea which hospital in the world would actually be equipped to treat it. My only small comfort is that it's benign.

.

It is very possible that your son will undergo oncology treatment, even if it is a benign tumor. For instance, radiation or perhaps a dose of chemo could encourage it to shrink down to a size that makes surgery much more manageable. What’s great is that he is truly in the hands of the best pediatric surgeon in the region, and likely one of the best in all of Europe. You can rest assured they will build the best possible plan for him. They’ve played plenty of high-stakes games before. Just stay brave and take it one day at a time. Patience is key.

Megan Lopez5 said:Please, if anyone understands this report, what is your opinion? Is it possible to destroy any remaining cancer cells with the recommended radiation? What are the chances of a cure, expressed as a percentage?

The specimen consists of a bile duct measuring 3 cm in length and 1 cm in diameter, featuring branching and two proximal ducts, each 0.5 cm long and 0.8 cm in diameter. In the middle section, within the branch, the outer diameter of the duct is 1.6 cm, with thickened, firm walls histologically infiltrated transmurally by tumor tissue. This tissue is composed of clusters and pseudo-glandular formations of moderately differentiated atypical epithelial cells within a desmoplastic stroma. Lymphangioinvasion and perineural invasion are present. The tumor tissue involves both walls of the duct, transmurally infiltrates the walls of all examined bile ducts, extends into the surrounding fat, initially infiltrates the edge of the visible liver tissue, and reaches the lateral (circumferential) resection margin. At the proximal resection margin of both ducts, tumor tissue is found reaching the lateral (circumferential) resection margin. At the distal resection margin of the bile duct, the wall contains proliferating connective tissue with multinucleated foreign-body type giant cells and foreign material (surgical sutures), while the margin itself is partially artificially damaged. No tumor tissue is found at the described resection margin.

Generally speaking, in all metastatic cancer cases,
the primary goal is to achieve maximum regression and/or disease stagnation. Total remission is, unfortunately, still a very rare occurrence.
You have to keep fighting for every single new day and take every chance available, whatever happens.

granitepanther45 said:Hi,

My dad was scheduled for chemo at the Jordanovac location back on April 8th. We finally managed to get a hold of a floor nurse over the phone, and she told us that chemotherapy sessions would actually be moved over to Rebro Hospital (1st floor, green building), but we just have to wait for them to call us with an appointment time. That was over a week ago, and we haven't heard a peep from anyone since.

On top of that, she couldn't tell us who will be managing his care now, especially since our regular pulmonologist was transferred over to intensive care at Rebro.

Word is they’ve been redistributing doctors from the Jordanovac location to other hospitals across the city.

Does anyone happen to know if the pulmonologists at Rebro are going to take over patients coming from the Jordanovac location?

Thanks everyone for any info you can share.

The Jordanovac location falls under Rebro's jurisdiction, and while all those pulmonologists are originally from Jordanovac, they're likely all tied up dealing with COVID-19 right now. It’ll probably end up being handled by one of the oncologists instead. Your best bet is to call the day oncology unit at Rebro directly and ask them how they're handling the transition.

Jack Diaz4 said:If it doesn't show up on a PET scan, what on earth is it supposed to show up on?? It’s honestly bizarre that a PET scan wouldn't pick it up, and

A PET scan isn't designed to flag bone tumors. And no, just because something lights up doesn't mean it's cancer, just like how not everything that glows is a tumor.

Paul Palmer2 said:Hi everyone.

I'm asking for a friend who is 28. Six months ago, he was diagnosed with malignant testicular cancer that had already spread to his lymph nodes and spleen. He went through several rounds of chemotherapy, but nothing worked. After that, they sent a tissue sample to another hospital, and the pathology report came back as an unidentified malignant sarcoma-type tumor. The guy is home now, starting to feel pain, and nobody is giving him any straight answers. It’s a brutal situation, especially since he’s got two little kids and he's the sole provider for the family. His mental state has completely tanked. I want to know what this kind of finding actually means—is it definitely a sarcoma?

Has anyone dealt with something similar?

He really needs to redo the pathology analysis with a new biopsy sample.
Sarcomas originate in the connective tissue; they are rare malignant diseases, and treatment options are pretty limited. Basically, you surgically remove whatever can be removed, then use radiation for the rest, and if there happens to be a specific targeted therapy for that particular type of sarcoma, you go that route.
In America, there are only a couple of doctors who truly specialize in sarcomas (like Dr. Smith or Duke). It might be worth looking into getting him treated abroad, perhaps seeing Dr. Casali in Italy.
https://www.ecco-org.eu/OldPolicy/EC...t/Paolo-Casali

Sarah King25 said:Yeah, something like that. 😢

Exactly. We all make our own calls based on what we think is best for us.

The people around us usually just get pissed off because they can't wrap their heads around it. 😁

Quick update:
New X-ray results came in. One mass grew by 4mm compared to the last scan five months ago, and they’re pushing for a bronchoscopy again. That’s the only change in the five months since the last checkup.

My father's take was: "If this thing keeps growing by 4mm every five months, I'll be happy about it."

So I kind of played along with his sarcasm and told him it's just an X-ray—it might not even be actual growth; it could just be how the radiation hit or the angle of the scan, blah blah blah technicalities.

He’s still refusing the bronchoscopy.

Question for anyone here dealing with lung cancer:
What has your experience been with temperature fluctuations?
How often did fever spikes occur, and at what levels did you actually bother using antipyretics to bring them down?

A 4mm increase isn't necessarily a definitive growth. Tumors aren't perfect geometric shapes, and everything depends on the viewing angle. It's like looking at a potato from different angles; the dimensions are going to look different every time.
He should really consider the bronchoscopy, though. A lot depends on who is performing it. Look for a specialist who really knows their stuff. It would be a shame to bail if the tumor is actually stable.

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Paul Garcia said:It looks like it’s related to the lymph nodes...

Keytruda?

Does anyone have any actual experience with this?

If they're on corticosteroids like Medrol, it's probably a side effect from that.

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Chloe Cook32 said:Hi there

My father (72) was diagnosed a month ago with adenocarcinoma in the lower esophagus, with metastases in his liver, lymph nodes, and spine (the T10 vertebral body is almost entirely destroyed). He’s been referred for oncology treatment. Based on the initial assessment protocol, the recommendation is "radiotherapy treatment, palliative. This will be followed by chemotherapy." Over the last two months, he has lost about 26 pounds.

That word "palliative" in the first assessment protocol really worries me. Does it mean the doctors have already "given up" on him?

Looking for some insight here.

Your father's illness is at Stage 4, which means the cancer has metastasized and spread. At this point, we aren't talking about a potential remission or a complete cure; we are strictly talking about extending the quality of life. Palliative radiation is meant to treat the specific metastasis that is actively ruining his quality of life. As long as curative medicine—the kind practiced in a hospital setting—can still help by slowing down the progression and ensuring he lives more comfortably, he isn't a "palliative patient." True palliative care is provided in hospice settings during the terminal phase, once curative options have nothing left to offer.
There is still plenty of room ahead for your dad to fight for a high-quality life.

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brightotter67 said:Hey everyone!
Unfortunately (but also luckily), I’ve been following and reading this thread for the last year.
Last May, my mom was diagnosed with colon cancer that had already spread to her liver and lungs. She went in for surgery at the end of June 2018 and now has a colostomy bag.
Yesterday, she ended up in the ER because of intense pain in her shoulder blade and lower back that she’s been feeling for a while. Given everything else, they suspect bone metastases.
The recommendation is to get a bone scan done on an outpatient basis, check in with the pain management clinic, and ideally see her oncologist.
Regarding medication, the ER prescribed her a Zaldiar tablet and Transtec 35mg patches. Right now, she’s taking Ketonal forte, but that only seems to help for a tiny bit.
She isn't currently undergoing chemo; her last round (the 4th cycle of 5-FU/LV) was administered on March 11th, after which her CT scans showed things were stable. Her last visit to the oncologist/tumor board was a month ago, where they decided to hold off on further chemotherapy because she’s only 47 kg and is nutritionally depleted. They told us to reach out once she gains some strength and feels better. We plan to contact the oncologist as soon as we get the bone scan done.
I’m looking for your experiences with those patches, and does anyone know where the best or fastest place is to schedule a bone scan? We are based in Washington, D.C.
As for the prescribed Zaldiar—which is a mix of acetaminophen and tramadol—we’re stuck. Her oncologist strictly forbade her from taking acetaminophen because of her liver. In this situation, what’s the lesser of two evils to help manage her pain?

It isn't actually within an oncologist's scope to decide if and how much acetaminophen will damage the liver; that’s a call for the anesthesiologist working in the pain management clinic. They will titrate the exact dosage and the specific cocktail of pain meds, then guide you on how to scale the dose up or down depending on the situation.
Regarding the bone scan, I'm not sure how fast the scheduling moves, but I think a standard X-ray might already show the status of the area in question. If it turns out to be a metastasis, radiation therapy can be very successful as a palliative measure, which would automatically take care of the pain too.
If she hasn't started already, Mom should begin consuming nutritional supplements like Ensure / Prosure. I assume the oncologist noted this in the findings, and if so, you should be eligible for vouchers or assistance to get them.
As for continuing chemo after that last line, it sounds like that chapter is closed for now since there was a progression, assuming it is indeed a metastasis. Keep asking questions, though—maybe seek a second opinion regarding a different new line of therapy.
Hang in there, there is still plenty of room to fight!

Gary Williams18 said:Gregory Turner71, thanks for getting back to me.
I actually saw a private gastroenterologist yesterday. I ended up bumping into a professor, so I paid a bit more for the consultation 🙂
Elem, he listened to everything, and I handed him my labs from exactly a month ago (blood work, enzyme levels, abdominal ultrasound). He palpated my abdomen, and he was able to pinpoint the exact spot on my right side where I feel that discomfort. He explained that the large intestine makes a sharp turn right under the liver. Gas frequently gets trapped there, stretching the bowel against other organs, which creates that specific sensation. He prescribed Colospa retard, so we’ll see how things look in two months. If there’s no improvement, he suggested a colonoscopy, though he doesn't think it'll be necessary.

However, there are other things I've noticed that are really weighing on me... I was under such intense stress before the appointment yesterday that it was honestly terrifying. I was literally shaking because the reality hit me—no more Googling, no more medical forums; now I was finally sitting in front of a professional who was actually going to tell me what's happening. Facing that moment drove me absolutely insane. I had to take a sedative just to cope. Since my appointment was delayed, the meds actually kicked in by the time I saw him, so I calmed down, even though I was sweating through my clothes and my palms were ice-cold and clammy. Once the exam was over and I walked out, I thought I could finally breathe, but then this massive headache slammed into me... God knows what my blood pressure was like at that moment. I'm a little calmer now, and I'm starting the medication today... But I still can't stop myself from constantly checking my body, scanning for any sign of pain or discomfort. I have this muscle twitching sensation, like I'm lacking physical strength... You know that feeling when you squeeze your fist as hard as you can and your hand starts to tremble? That's exactly what I'm feeling in my leg muscles. It's all too much. Honestly, my next appointment might need to be with a psychologist or someone else. As of today, the actual pain that was bothering me yesterday is gone. Instead, I've found this new thing—this constant slight weakness. I'm diabetic, so I know what hypoglycemia feels like... This isn't quite that, but it feels like I'm right on the edge of a sugar crash, that specific sensation in my muscles...
Sorry for the long rant; it just helps to get it all out there...

You're anxious because you're terrified about your health. You need to make some lifestyle changes and find things to occupy your mind and cut out the stress. Fix your diet and remind yourself that you've done everything right. Given that the doctor pinpointed the exact location immediately, he clearly knows his stuff and the treatment is already underway. You're in the best possible hands, and this will get resolved.
Just relax!

If you’d had more information—if you ever could have—then you absolutely would have made a different choice given those specific circumstances.

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Dana Martin87 said:My dad passed away this Wednesday. He fought colon cancer for four long years. By the time they caught it, it was already too late for a cure. But despite that, he stayed remarkably fit for most of those four years; he could walk several miles a day without breaking a sweat, though he didn't tolerate the cancer pain at all. He went through several major surgeries during that time—recovery was brutal, but within a month, he’d be back on his feet, handling all his daily chores like nothing happened. Things took a turn for the worse in February when he developed a stomach ulcer. It nearly bled him out. He lost a massive amount of weight. After they operated on the ulcer, there was a brief window where he seemed to bounce back, regained some weight, and was active again—driving himself around, doing the grocery shopping... but then the rash appeared all over his body. I knew right then things were heading south. Following that rash, early in April, the severe nausea kicked in. It started with heavy diarrhea and then turned into constant vomiting. He was hospitalized briefly, then spent a few days getting IV fluids at home from the local clinic. That helped for a bit; the vomiting stopped, and the nausea settled into something manageable. To anyone looking at him, he seemed fine, but he told me he felt it—even if it wasn't debilitating. Then, after a few okay days, the violent vomiting returned. Another hospitalization. He actually felt much better once he was back in the hospital; he started eating again, so they let him come home. But as soon as he stepped through the door, the vomiting started again, and two days later, he was back in the hospital for good. He couldn't eat anything at all anymore. They had to keep him on total IV nutrition. Surprisingly, he wasn't in pain. He stayed in the hospital until the end. We talked just the day before he passed; it was obvious he was rushing through the conversation because talking was becoming such an effort. That was the first time during this whole illness that he seemed truly disoriented. He actually called me to give me someone's phone number—someone I hadn't even asked for. My mom had been the one looking for that number. He got confused and thought he needed to give it to me. Yes, he had a long, grueling battle, but I think his story can offer some hope to people who receive a late cancer diagnosis. It doesn't have to mean you're immediately sentenced to agony and being bedridden. Aside from his last few weeks in the hospital, Dad remained mobile, stayed relatively pain-free, and until that ulcer hit, he still had plenty of strength left. He was always a strong man, and he remained so until the very end.

Please accept my deepest condolences. Given how advanced the stage was when it was discovered, he fought an incredible fight and held on until the end—four truly impressive years. You should be proud to have had a father like him. May he rest in peace.

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Eric Newman75 said:My only mantra is this: that piece of crap isn't going to kill me. So what if it comes back for everyone else? It’s not coming back for me—that's just how it works. I’m going to be the exception, the one people write books about. When I hit a hundred, they're going to have to use a shovel to put me down because I am not leaving this place! 😁

Respect. Having an attitude like that is the absolute baseline for any successful fight. Not a single person has ever survived this without that kind of grit.

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