Support resources for families dealing with cancer and other serious illnesses

Tate's findings were solid, so nothing else spilled out🙏 Thank God!

Just checking in myself. Just like I thought, based on my markers and just how I’ve been feeling, the CT scan results finally came back.
It's total progression. Everything from ascites to peritoneal metastases that are already way too big now, plus maybe some new recurrence in the colon along with polyps and bowel narrowing—and there are suspicious lung metastases, tiny ones, maybe 3 mm...
I'm out of chemo lines. No more FOLFOX.
The Americans (thank you guys, seriously) didn't include me in the trials for their panetuximab or Vectibux drugs.
So, I'm most likely looking at no more chemo and heading home. I'm going to try for HIPEC surgery if I can. My doctor is supposed to write a recommendation, but honestly, they won't really know the full extent until they actually open me up, though even now they're debating if it's already too late...
There it is. A guy who was swimming in the ocean just this morning now has almost all his windows shut. Palliative care? What does that even mean at this point? Tramadol, morphine, pain meds, draining the ascites? That's it? It just sucks. On one hand, I wanted to fight, and I fought like a lion—42 months, even though they originally gave me six months to a year max... maybe I'll make it to 48, who knows. I'm pretty depressed. And believe me, any words of comfort feel meaningless right now, even though I appreciate everyone. Please, just spare me the "alternatives." If you'd just Google peritoneal carcinoma and a few other things before suggesting I drink baking soda or kerosene... I hope God heals everyone.div>

wiredotter75, have you sent your test results over to San Francisco yet? I’ve seen firsthand that when things hit a wall here, they often end up suggesting five different procedures or clinical trials over in Europe—and since we're part of the European Union, getting access to those is actually much smoother now. On that note, I’d really suggest getting a second opinion from the Technical University of Munich. They are absolute pioneers in proton beam therapy, which is way more effective than the standard stuff and has proven to be a game-changer for treating metastases. Have you even asked about trying Xelod while you're still finding your footing?
Look, this doesn't have to be the end of the road; you just need to start looking for answers in different places.
I'll track down the link and contact info for those folks in Munich and post it right here for you.
Hang in there.

I didn't send it to Angela Wright... I guess they might actually reply if I just shoot them an email??
One doctor told me today that I could just buy Vectibux myself and have an oncologist handle the infusion privately. He was honestly shocked they didn't put me in the clinical trial, especially since I saw people who were basically 80 years old getting in. I mean, every life is worth something, right?

Mentally, I've pretty much hit rock bottom, but I guess I need to find some strength to pull myself together.

I shouldn't even mention alternatives, but I'll be taking...
That stuff everyone keeps talking about..
Hang in there, everyone fighting this.

Just Google San Francisco; if you head to their site, you'll find a contact option specifically for seeking a second opinion. You can reach out directly—just introduce yourself as your doctor to make the inquiry easier—or better yet, coordinate with Dr. O. The specialists over in Munich are usually pretty responsive when you get in touch.

wiredotter75, I am so incredibly sorry to be reading this... but please, don't let hope slip away just yet. If it were me, I would try absolutely EVERYTHING. You hear those stories about people who were essentially written off by doctors, only to pull through against all odds—they do exist, don't they? I know my own father would probably lose his mind if he heard me saying this, but still... miracles happen. You have to try. My mom is going through a really rough patch right now too; things have stabilized slightly, but we're dealing with pancreatic cancer and metastases that just keep spreading. We're waiting on the marker results and the CT scan now... and even so, I’m clinging to the hope that there's still something left to be done. That makes me wonder, Angela Wright—that facility in Munich, is it specialized for all types of cancer, or...?

Dear Angela Wright, I realized I never actually congratulated you on the baby! 🙂 Wishing you both nothing but health and happiness. 🙂

Thank you all so much for all the suggestions so far. 🙂

Prof. Molls Radiation Therapy Munich Klinik-fuer-Strahlentherapie
Rita Engl Chief Secretary
tel. +49 (89) 4140-4501 Fax: -4882 Clinic and Polyclinic for Radiation Therapy and Radiological Oncology Klinikum rechts der Isar, Ismaninger Str. 22

The contact info is listed above. If you want to know the full scope of what they can actually treat, you’re better off asking them directly. I had a friend who went through this; she was dealing with lung metastases from breast cancer. Unfortunately, she didn't find out about this specific treatment option until her health had already been hammered by years of constant medical intervention. While it's true that the tumors actually retreated, the reality is that her heart ultimately gave out from the cumulative damage.

Angela Wright said:Prof. Molls Radiation Therapy at the Technical University of Munich Klinik-fuer-Strahlentherapie
Rita Engl Chief Secretary (secretary)
tel.: +49 (89) 4140-4501 Fax: -4882 Clinic and Polyclinic for Radiation Therapy and Radiological Oncology Klinikum rechts der Isar, Ismaninger Str. 22

Contacts are right there. Honestly, if you want to know what they can actually treat, just ask them directly. A friend of mine used them to treat lung metastases instead of breast cancer. Sadly, she didn't find out about that option until her health was already trashed from years of treatment. The thing is, the tumors did recede, but she ended up passing away anyway because her heart couldn't take it.

thanks, super helpful.........
I'm moving on after this initial shock
moving forward.....I've got some options to look into.........

ajvi30 said:We have a case of stomach cancer in our family. Every ultrasound we had, even the PET-CT, suggested there were no metastases, yet the malignancy was definitely confirmed. The only way—and I mean the absolute only way—to get a 100% accurate assessment regarding metastasis is through surgery, essentially seeing it with the naked eye. When he underwent the procedure, despite doctors insisting it was localized only to the stomach, they ended up removing his entire stomach, the lymph nodes, his spleen, and his gallbladder, then connecting the esophagus directly to the small intestine. It is possible to live this way, and he actually recovered from the surgery itself quite well, though the weight simply won't come back. If I could offer one piece of advice, please do not fixate on the prognosis; every person is an individual, and every body functions in its own unique way. Had we strictly followed the medical prognosis, he wouldn't be with us today, but he is still here, still fighting, and honestly, he looks quite good, even if this disease remains entirely unpredictable. Keep your head up, because there is so much strength within you, and maintaining a truly positive mindset is often the path toward success....

Dear ajvi, would you please tell me what the situation is like for patients these days? Is there still hope?

Why would anyone opt for a CT scan over an MRI—isn't the latter actually the superior technology?

ruggedmarlin2 said:Why would anyone choose a CT scan over an MRI—isn't the latter actually better?

Not necessarily; an MRI is certainly superior when it comes to clarifying specific pathological conditions that might still seem ambiguous after a CT scan.
However, a CT scan definitely still holds its own advantages.
Ultimately, it all depends on the specific case at hand, doesn't it?

Angela Wright, congratulations! 🙂

Just checking in with an update... Tate (lung and bronchial cancer with metastases in the kidneys and brain—he just had Gamma Knife) started his first round of chemo in Rhode Island three days after starting that platinum protocol (not entirely sure how that works, but I'm trying to wrap my head around it). He was vomiting for days straight. We had to rush him to the ER for IV fluids; Reglan and Torcan-čepić weren't doing squat. It wasn't until five days later, once I finally tracked down some Zofran, that he actually started feeling better. Now, he’s just completely wiped out and exhausted. He’s dealing with back pain and can't sleep—he’s taking Zaldar for the pain, but it’s not helping much, and the doctor suggested adding Ibuprofen, but he won't touch it because of a stomach ulcer. To top it all off, he’s even dealing with bleeding hemorrhoids now. He’s already talking about how he doesn't want to go through the next rounds of chemo scheduled for the 23rd, 24th, and 25th under that same protocol. Plus, he has a follow-up brain MRI on the 29th, though I have no idea how he’ll handle that after how brutal this first round was. His labs look okay, except for his hemoglobin, which is sitting at 109.

Does anyone have any advice? Or maybe a recommendation?

I picked up some medical-grade baking soda for him, but I'm sitting here wondering if I should actually have him drink it, or if he should try "that thing everyone keeps talking about." Right now, he's also taking Ganoderma and AHCCImunomax.

Sending love to everyone—keep fighting!!

wiredotter75, I'm so sorry to hear about your results. But you're a fighter, so hang in there and just keep pushing.

Can someone explain this sentence to me: In the upper left lobe of the lung, there is a non-calcified nodule measuring 3mm?
What exactly is a nodule? I've been Googling, but I'm coming up empty. Also, what does it mean when they say: Heart is compensated?

Nancy Lee said:Could someone please clarify this sentence for me: "In the upper left lobe of the lung, there is an unformed nodule measuring 3mm."
What exactly is a nodule? I've been Googling, but I can't seem to pin it down. And what does "The heart is compensated" mean?

A nodule—or nodulus—is essentially a small lump, which shows up as a rounded shadow on an RTG scan.
Its significance can vary quite a bit—it could be anything from a simple scar or a cross-sectioned blood vessel to, potentially, a pathological process.
Ultimately, the interpretation depends entirely on the initial diagnosis and the specific clinical profile of the patient.

As for the heart being "compensated," that simply means there are no signs of failure; in other words, it looks satisfactory.

wanderingcobra76 said:A nodule or node is just a lump—basically a round shadow on an RTG scan.
It could mean anything, really. Maybe it's just some scar tissue, or maybe a blood vessel caught at an angle, or potentially something more serious.
The whole thing depends on why the test was ordered and the patient's specific history.

Saying the heart is compensated just means there aren't signs of failure; basically, it looks okay.

My dad has small cell. At the end of the report, the conclusion says everything looks normal, meaning there's no sign of disease progression.

Thanks!

My dad’s been tracking this suspicious little lesion—about 1 cm—for three years now. We've done several CT scans, two PET-CTs, and a handful of X-rays.
The results always show the same thing: nothing is growing. It's just sitting there. A surgeon at the local Mayo Clinic would probably suggest operating, but since my dad has heart issues, his doctors advised us to just monitor it every six months via X-ray, CT, or PET/CT instead.
Anyway, here is what the most recent CT from two months ago noted:
"...left apicoposterior, upper lobe - irregular nodule approximately 1 cm in size..." —that’s the specific spot we’ve been watching, and its dimensions haven't budged since day one.
"...In the upper mediastinum, left paratracheal, there is an oval lymph node measuring 1 cm long by 5 mm wide. Right paratracheal in the middle mediastinum, two lymph nodes are visible with clearly identifiable fatty hilums, inseparable from each other, measuring 21 mm in length. In the aortopulmonary window, an oval lymph node measuring 12mm x 6mm is visible. At the level of the carina, several very small lymph nodes are present.
None of the described lymph nodes have the typical appearance of pathology.
In the upper mediastinum towards the neck, right paratracheal, free air is visible measuring 10x4x14—pneumomediastinum."

That CT was taken back when my dad had a nasty cold, I think he even had a throat infection at the time...
Could those listed lymph nodes just be a lingering effect from that cold or something similar?
The SUV was 0.9 on the first PET-CT and 1.4 on the second.
We’ve just been scheduled for another PET/CT (after a two-year gap).
Is it actually possible that this isn't a tumor, considering we've been monitoring it for three years with zero changes? And if it isn't, is there any chance it could suddenly start growing?

wiredotter75 said:thanks a million.........
I'm moving on after the initial juice
moving forward.....got some options lined up.........

Hey wiredotter75—so sorry to hear things have taken a turn for the worse! Hang in there, man. We're all fighting our own battles, but don't lose heart—there's always hope, you know that better than anyone, especially seeing how hard you've been pushing. We're all rooting for you here. Maybe our advice sounds a bit goofy sometimes, but honestly, everyone just wants to help those who are struggling. I really hope you get accepted into a top-tier clinic where they can actually make progress with your treatment! We're thinking of you—keep fighting that fight with everything you've got! Best,

Hey everyone.
It’s been a minute since I last posted, but I’ve been lurking here on the Forum regularly.
My husband is doing well. Based on his latest CT from the hospital in Dubrava, there’s no sign of cancer. Is he cured? I truly believe he is. Back when we first got the news eight and a half years ago, the prognosis was absolutely brutal. They basically gave him a few months to live.
The radiation therapy definitely took its toll—it left some damaged blood vessels in its wake—but his heart is holding up fine. He had surgery back in December at the Dubrava facility to get three bypasses done, and he's actually in pretty solid shape now.
We haven't stepped foot in Jordanovac since March 2012. After his "old" doctor fell ill, he was handed over to a new physician whose approach was just catastrophically bad. Honestly, I don't even know if we’ll ever go back there for follow-ups. It’s not like we’re dying to visit, and she wasn't exactly making things easy for us either... it just turned out that way. It was ugly and honestly pretty sad. The CT they did at Dubrava came back clean. But as for where we go next to monitor his lungs? I have no clue. We felt practically kicked out of Jordanovac, both by the nurse in the clinic and that doctor I mentioned. And then he only gets called in for a routine checkup after six months? I couldn't make heads or tails of it.
Anyway, that's beside the point. I’m just hoping nothing new starts brewing. Things seem good right now. I just pray it doesn't take a turn for the worse.
Sending love to you all, hang in there.

Lisa White54 said:Hello, everyone.
I haven't posted in quite a while, though I do follow the Forum regularly.
My husband is doing well. According to his most recent CT scan performed at the hospital in the city, there is no sign of cancer...

Oh, Lisa—what a relief to hear you're doing okay...👋👋👋

As for what happened in Jordanovac, I have no comment; I'm sure someone will chime in soon with some sensible advice.

Well, you certainly made my day.🙂
The other hurdles ahead seem minor—given everything you've already endured, they're almost negligible... just hang in there and take care of yourself.

Lisa White54 said:Hey everyone.
It’s been a minute since I’ve posted, but I’ve been lurking here on Reddit regularly.
My husband is doing okay. According to his last CT scan they did over at the hospital in Brooklyn, there’s no cancer. Is he cured? Personally, I believe he is. Back when they first gave us the prognosis—like, eight and a half years ago—things looked incredibly grim. They were basically giving him a few months to live.
The radiation therapy definitely left its mark, though; some damaged blood vessels there. But his heart is fine. He had surgery back in December at the Brooklyn facility where they put in three bypasses, and he's holding up solid.
We haven't stepped foot in Jordan since March 2012, mostly because we had such a horrific experience with the doctor my husband switched to after his "old" doctor fell ill. Honestly, I don't even know when—or if—we’ll ever go back there for a checkup. It wasn't that we didn't want to go, but the lady was just completely unapproachable... it was awful. Truly sad. The CT they did in Brooklyn came back clean. But as for where we should go next to monitor his lungs? I genuinely have no clue, because we felt practically kicked out of Jordan—both by the nurse in the clinic and that doctor I mentioned. And all this happened just because he showed up for a routine follow-up after six months. I couldn't make heads or tails of it...
Anyway, moving on. I just hope nothing new starts developing. Things seem stable right now. I just pray things don't take a turn for the worse.
Sending love to you all, hang in there.

So glad to hear your husband is doing better! As for Jordan—yeah, it's a joke. My late mother went through the exact same thing; she was brushed off by a doctor just because my sister spoke up and said they weren't taking proper care of her! It's a disgrace! Isn't enough that people are dealing with their own misery without—OH YEAH, THEM—treating us like idiots? And then the poor patient just has to shut up and take it! Thank God you guys moved on from there! At least he's safe now. You can take him to other hospitals for follow-ups; they aren't the only game in town! The main thing is that he's feeling better! Best to you both!