I am checking in after a three-year absence. I am 58 years old and currently based in Sarajevo.
A brief recap: Three and a half years ago, I was diagnosed with cancer, back when VedranST was still part of this community. The results from five different histopathology analyses of my lymph nodes and skin have consistently yielded nothing but "adenocarcinoma of unknown primary epithelial origin." Based on those findings, I underwent chemotherapy regimens including cisplatin plus irinotecan and carboplatin plus taxol, neither of which produced any results. I have endured roughly ten CT scans, MRIs, three PET/CTs, scintigraphy, and countless ultrasounds and blood tests. In my desperation, I even went for HIV testing—thank God it was negative. Every single scan and report indicates that no organ, from my head down to my pelvis, shows signs of involvement.
The most recent reports suggest the cancer persists through metastases in the lymph nodes of my left groin, small pelvis, and left side of my neck, as well as in my bones (spine, Rib, and skull) and on the skin of my hands, neck, and head.
To manage the pain, I underwent five radiation sessions on my spine, which did provide some relief.
Tomorrow, I am scheduled to have another "appearance" on my skin removed, in hopes that another HP analysis might finally provide an answer regarding the cancer's origin.
Given that waiting for these results here takes over a month—and they will likely return the same inconclusive result (adenocarcinoma of unknown primary)—I am asking for assistance: Is there a high-quality, reliable, and trustworthy laboratory in the US where I could potentially send samples to be processed? My oncologists are forced to rely on these specific findings because no other diagnostic tool has provided answers; they determine the entire course of treatment based solely on the HP results.
Thank you for your responses. Regards from Sarajevo.
I haven't posted in over three months, though I have been a regular reader of your updates. I am checking in simply to express my gratitude once again to Angela Wright, Vince, and the others who provided encouragement and shared their expertise regarding the "combat tactics" required when dealing with oncology.
Exactly one year ago, I was first informed that I had adenocarcinoma, diagnosed solely based on a metastasis in my left groin. Of course. Why me? I still have far too many unfinished business items on my list. As if anyone actually asked. Then came the first surgery (those lymph nodes), followed by an endless battery of tests in Boston and a PET CT in Washington, D.C. They found metastases in the iliac region—somewhere deep within the abdomen. Another surgery followed, and once again, the pathology report confirmed adenocarcinoma. Naturally, chemotherapy was the next step. I managed to endure ONLY three rounds. My body simply gave out—blood counts, heart, nerves, the works. Since the primary tumor still hadn't surfaced, I requested that my doctor remove my gallbladder, which was riddled with stones. Third surgery: the gallbladder (plus a "free" appendectomy), just so I could finally step away from the chemo. During the procedure, they performed a visual inspection of everything; they checked an organ in the abdomen, but found absolutely nothing. A month and a half later, a follow-up CT showed it was still nowhere to be found. What is one supposed to do? That was back in September.
After consulting with my oncologist, we have suspended all treatment. I am scheduled for a repeat CT in early February. We will wait until the primary site reveals itself. Given that I am not exactly built like an athlete, I couldn't push any further. Cisplatin and irinotecan effectively cut me in half. We shall see what happens next; for now, I am in WAITING MODE.
Therefore, I offer my respect to the GIANTS like Vince and those similar to him, who endure 60, 70, or even more rounds of chemotherapy.
First off, congratulations to everyone in the European Union on joining! I’m actually quite envious.
There is a possibility that, due to some severe side effects, my doctors might swap out Cisplatin for Carboplatin. Any experiences with this? Is it tolerated similarly, or does one feel significantly worse than the other?
Alternatively, they might just add Aloxi alongside the Cisplatin. Has anyone here used that specific medication?
I’ve never had a gastroscopy before, so now I’m second-guessing whether they should go ahead with it to check the stomach, bile ducts, and pancreas all at once. Does anyone have experience with that particular procedure?
Give my best to Vedran and Angela Wright! You two are absolute heroes.
wiredotter75 said:Rachel Wood27 will likely suggest a second opinion and maybe a PET scan. Honestly, giving advice is difficult since I am a patient myself. I am currently undergoing my 56th chemo session. I feel alright—mostly fine, just some nausea. My blood work was acceptable, though unfortunately, my markers jumped from 6 up to 8.4, which is concerning regarding potential progression. But what choice do I have? I have to keep pushing forward. Kevin Bishop10, where are you?
wiredotter75, hang in there for me!
Two days ago, I had my third round of chemotherapy, and they actually had to stop it—vomiting, pain, diarrhea, the whole works. I realize Cisplatin is aggressive, but it’s absolutely destroying me after only two and a half sessions. I can't do this anymore. Part of me just wants to walk away from treatment entirely. Especially since we're dealing with an adenocarcinoma of unknown primary origin. What exactly am I treating? How do you fight something when you don't even know where it's hiding? Enough. I'm typing this while shaking from pure exhaustion. But seeing your willpower and your drive to live gives me strength...
I'll check back in once I'm feeling better... Hang in there!!!
Rachel Wood27 said:Dear all, I’ve been reading this forum for some time now, and today I find myself needing your advice and perhaps a few comforting words. It concerns my father. He’s 55, was a perfectly healthy man until recently—a former smoker (quit five years ago after having a heart attack) and quite active in sports. About three months ago, issues began: constant diarrhea, several times a day, for about three weeks before it settled down. Two months ago, he started experiencing pain in his right groin, which he dismissed as a strain from playing more intense table tennis. Soon after, lower back pain set in. In the meantime, I insisted he see a doctor regarding the digestive issues, so he had blood, urine, and stool tests to check for occult bleeding. His blood work was fine, aside from elevated GGT; urine showed a few erythrocytes and Calcium oxalate, but otherwise okay. Out of the three stool samples, only the third was positive for occult blood. An abdominal ultrasound and colonoscopy were scheduled next. The intestines appeared normal, nothing found there. On the ultrasound, all internal organs seemed fine except for the liver—it’s riddled with multiple echogenic nodules up to 48 mm, suspicious for metastatic changes. Since the ultrasound preceded the colonoscopy, the radiologist suggested they were likely metastases from the bowel (as that is most common in men). However, the colonoscopy ruled out the large intestine as the source. That procedure was done on May 31st—so about a week and a half ago. A day later (on Saturday), my father ended up in the hospital due to gastrointestinal bleeding. On Monday, a gastroscopy revealed only two ulcers on the duodenum (which likely bled because he had taken quite a few painkillers for his back pain over the last ten days); the stomach and esophagus looked normal. Another ultrasound was performed; the liver remains unchanged, everything else looks fine. Tumor markers were mostly normal, though CA 19-9 was slightly elevated (49.1, with a limit of 37) and CYFRA was high (9 vs. a limit of 3). On Friday, an abdominal CT was done, and yesterday they repeated a CT of the upper body along with X-rays of the lungs and bones. He also saw a rheumatologist and a urologist; kidneys and prostate are fine. Lungs are also clear. The CT results showed metastases in the liver (which is extensively involved) and metastases in the pelvic bones, lumbar and cervical spine, chest, and shoulder blades. Today, the oncologist decided against treatment, suggesting only pain management instead. The worst part is that the primary tumor remains unknown; despite all the tests conducted so far, no primary site can be located. They won't perform a biopsy of the metastases because, due to his liver condition, his platelet count is too low, posing a risk of internal bleeding. We will, of course, seek a second opinion, though I am painfully aware that we are looking at a terminal phase. I can hardly believe they won't offer any therapy at all—that they won't even try something. Tomorrow, we have to check a mole on his back to ensure it isn't melanoma, and then we will see where we stand. Does anyone have any advice on what to do in a situation like this? We aren't from Chicago, and the tests weren't performed here, so we are planning to head to Chicago to seek a second opinion. But where and with whom? And how can we possibly identify where the primary tumor is located? Please, if anyone has any advice, any kind of advice at all!!!😢
Dear lady!
I am from Sarajevo, also 55 years old, with metastases in the lymph nodes, and the primary tumor is unknown. Currently, I am undergoing very aggressive chemotherapy for an unidentified tumor, given that only the nodes are affected.
I was reading on an online forum that a primary tumor can sometimes exist at a cellular level, meaning it might not show up on all the standard imaging equipment. From my own research and conversations with oncologists, I've learned that there is a growing number of cases worldwide where the primary site remains unknown. At this stage, seeking a "second opinion" seems to be the only logical path; perhaps the next oncologist will suggest additional diagnostic tests.
If I may offer one piece of personal advice: if you have the means, get a PET/CT scan done immediately. There are plenty of facilities available here in the States, and you can usually go through a doctor's referral. I went to a clinic in Chicago back in February, and they had the results ready by the next day. It’s a straightforward procedure, nothing aggressive, so if your father is up for the trip, it wouldn't be a bad idea to "check that box."
Those are just my humble observations thus far. There are many people here who likely know much more than I do, but they are understandably preoccupied with their own battles against illness. Perhaps someone will find the strength to chime in with further suggestions. I don't know much about the specific condition you described regarding your father, so I truly wish you the best of luck with his treatment.
I also want to send strength and resolve to the other visitors on this site—specifically Angela Wright and the "guy" from Miami. Best regards!
My levels are neutral... 43.2, and leukocytes are at 3.3, so I'm not quite sure how to apply your formula here.
How many Aloxi injections are typically administered alongside each chemo session? Is it just one, or multiple over several days?
I truly admire your resilience and spirit. I've only undergone two rounds of Cisplatin and irinotecan, and I already feel completely defeated. The side effects seven days after therapy were brutal—nausea, vomiting, the works. Anything I eat or drink is out within five minutes, so the weight loss happens rapidly. Having gone through 55 similar treatments, I genuinely marvel at you. Perhaps that is what they call the indomitable human spirit. Greetings from Sarajevo!
I would appreciate some advice regarding a few matters:
1. My third round of chemotherapy has been pushed back by seven days. The doctor decided I needed more rest, especially since my blood work isn't looking great. Erythrocytes at 4.0, leukocytes at 2.9, hematocrit at 0.4, platelets at 113, and lymphocytes at 47.5. While these numbers are technically below the threshold, it doesn't feel significant enough to warrant delaying the entire treatment. In your experience, what specific levels trigger an absolute requirement to postpone therapy?
2. Due to severe nausea and vomiting, my doctor recommended Emend. How much more effective is this compared to Zofran? According to the instructions, the first dose of Emend is taken before chemo, but the hospital also administers their own tablets right before the session begins. Am I permitted to take the Emend at home and then follow up with "their" medication once I arrive at the facility? The Emend comes in a three-tablet pack. Even after completing all three, is there still a risk of experiencing nausea and vomiting on the third, fourth, or fifth day?
Thank you in advance for any insights or recommendations. Greetings from Sarajevo!
wiredotter75 said:Hey. Just trying to give you an answer. I'm currently undergoing the chemotherapy protocol for colon cancer...
wiredotter75, you’re a hero. Fifty-five rounds of chemo and you’re still standing. You don't just deserve a cure; you deserve a long, happy life. I'll be praying for you tonight.
I finished my second cycle eight days ago, and frankly, I haven't recovered at all. I have no idea when I will. It's constant vomiting, perpetual nausea, weakness, illness—the whole spectrum of post-chemo misery. After the first round, I managed to pull myself together enough for the second, but as things stand, there won't be a third. I simply can't. Perhaps I'm just weak or a coward, but I lack the strength to even stand up in my own house, let alone make it to a third cycle. My nephew has his graduation this Sunday; will I even be able to attend? I highly doubt it. That is what hurts the most.
That is why I admire people like wiredotter75. You deserve nothing but the best. To me, you are a hero among heroes.
Naturally, they still haven't pinpointed the exact location of the adenocarcinoma, yet they are persistent about pumping me full of toxins. I've developed a massive issue where I vomit both before and after eating. At the mere mention of the word "food," my stomach turns. I force myself to drink or eat anything I can, but it doesn't work. One sip goes down, two immediately come back up (same with bites of food). The will to fight is there, but my body refuses to cooperate.
The strength is gone. I need treatment.
P.S. What happens if I refuse the next chemotherapy cycle?
Aspirin is superior to all those other options for managing side effects; in the US, it runs about $233 per chemo session, while in Boston they say it’s $333....Zofran is covered by Medicare here, though it’s the weakest option—it works for some, I suppose. Reglan is just basic stuff; we keep it in our home medicine cabinet for everyday use, though I’ve heard it actually suffices for some people. Apparently, it all depends on the specific chemotherapy protocol being used.....
I haven't heard of Aspirin before, nor did my doctor suggest it. Perhaps he'll prescribe it if I mention that Zofran hasn't been particularly effective for me. Is it available by prescription? Thanks to everyone. Regardless, going four days without eating or drinking anything is not an ideal strategy. No matter how much I try (read: force myself), one sip goes in, and two immediately come right back out. I need to prepare more effectively for the next round.
Is the second (third, fourth...) round of chemotherapy easier than the first?
Angela Wright said:Kevin Bishop10, I previously sent you the link where those protocols are detailed precisely. Perhaps try air-popped popcorn; there are inexpensive machines available for that. It helps some people. I also suggest applying crushed flaxseed dissolved in lukewarm water—let it sit for an hour, strain it, and drink the liquid. For certain individuals, Coca-Cola works wonders. Ask your doctor for something else regarding the nausea. Aspirin, for instance, can be effective.
Thank you for the response.
I reviewed your link regarding occult tumor protocols earlier, but I couldn't locate the specific combination I was prescribed (irinotecan + cisplatin). That is why I inquired whether this particular therapy is recognized for other types of tumors.
I tried the popcorn; it simply doesn't work for me. Worse still, I cannot tolerate any liquids; if I swallow even a single drop, it comes right back up. Not even Coca-Cola stays down. This is problematic, as I need to consume massive amounts of fluids because these toxins are causing intense kidney pain. I suppose I will attempt the crushed flaxseed...
Is Reglan "weaker" or "stronger" than Zoloft? Might it offer relief if Zoloft failed to do so? Thank you...
I pushed through my first round of chemo on May 18th. It’s only now that I feel strong enough to actually sit at a computer. Though, frankly, I have some concerns:
1. For an occult adenocarcinoma (where the primary source remains unknown), my prescribed regimen is irinotecan plus cisplatin—six cycles total, administered once every 21 days. I haven't been able to confirm if this is the standard protocol. Does anyone know?
2. Despite being given Zofran tablets to manage nausea and vomiting, they were essentially useless. Is there anything more potent out there?
3. For the first four days, I couldn't keep anything down—no food, no water, just constant vomiting. Does anyone have a suggestion for something I might be able to eat that won't immediately exit my stomach?
4. Are there any general rules regarding the second cycle? Does it tend to hit harder, or is it potentially easier?
Any advice would be greatly appreciated. This was physically brutal, and I am genuinely unsure how I will manage to repeat this five more times.
Angela Wright said:We are talking about treatment protocols that are globally accepted, and the medical community in Canada adheres to them. Regardless of how much financial trouble Canada might be facing, the quality of medical care and physician expertise has always been top-tier; if other places tried to do what we do with such limited funding, they’d collapse. Plus, miracles happen here too. Feel free to post whenever you actually need advice. I don't know the first thing about this stuff, but there are plenty of dear and intelligent people lurking here, so you'll likely get an answer or at least a pointer toward where to find one.
I saw my oncologist today, and my chemotherapy has been pushed back to next week. My blood work and tumor marker results (CA 15-3, CA 19-9, CEA, and PSA) came in. The blood counts look fine, and the markers are within normal limits. For reasons unknown to me, however, the oncologist decided to change the therapy. He has now prescribed cisplatin along with another cytotoxic drug (I didn't catch the name), followed by radiation.
Is this an overly aggressive approach for metastases in the groin lymph nodes when there is no primary tumor present?
What kind of side effects should I expect from this chemo, and is there anything I can do to make it more tolerable?
Angela Wright said:I can't speak for Canada, but here in the States, they show up on hospital charts all the time; I don't see why they wouldn't be available over there either. You should get anti-nausea meds from the doctor. People try all sorts of things to cope. Some swear by Coca-Cola, some by popcorn popped in hot air, others by flaxseed emulsions... Most often, it just turns out to be diarrhea. Don't stress about it beforehand. There are people who go through everything without any symptoms at all.
I am not an administrator; I simply started this thread and am participating because sharing what I've learned gives more purpose to the agony my mother and I have endured.
Thanks for the advice.
You’re lucky you don't know how this country works. Even the news reports that hospitals are facing shortages of various chemotherapeutic agents. If I don't receive those anti-nausea medications, I won't be surprised at all. In America, anything is possible.
I will attempt to follow the advice: not to worry prematurely. And I will return (if I am able) once therapy begins to ask for guidance and share my experiences (if they might be of use to anyone).
Your true character shows now: despite everything you've lived through, you still find the strength to help others.
Angela Wright said:Kevin Bishop10 We are talking about a combination of two drugs here: Taxol and Carboplatin. The most frequent side effects tend to be nausea and digestive issues, though one can certainly get used to those.
That said, those last two options in the gray area are the newest ones. I would suggest you print this out and hand it to your doctor so they can evaluate if it's worth trying. For instance, this CapeOx regimen is much easier to endure because the cycle repeats every three weeks; Xeloda is taken orally twice a day and most people tolerate it quite well, while the Oxaliplatin is just a single tough day every three weeks.
Angela, thanks for the response.
I've printed it out and will show the oncologist tomorrow. I just hope there's a wide enough spectrum of medications available in Boston. If not, then so be it...
Does anyone have recommendations on how to reduce nausea and vomiting (preferably natural methods, or medication if absolutely necessary) for this specific drug combination?
Regarding digestive issues—are we talking constipation or...?
I noticed you're an admin, but you're clearly more than that. So conscientious, quick, and knowledgeable about everything... You deserve at least a chocolate bar! Greetings from Boston.
I’m checking back in following a follow-up with my oncologist.
On two separate occasions, lymph nodes were removed from my inguinal region (groin) and along the iliac vessels (retroperitoneum). Pathology has confirmed these are metastatic due to malignancy.
My oncologist noted that while it’s possible everything malignant was successfully excised, there remains a chance that something else is lurking somewhere or that the primary tumor remains undetected. I have blood work and tumor marker testing scheduled for tomorrow, as the last round was five months ago. If the blood counts look good and the tumor markers return to normal levels, I am slated to begin "Taxol/Carboplatin" therapy this coming Tuesday.
If anyone here has experience with this specific combination, I would appreciate knowing how it is tolerated and what the most frequent side effects tend to be.
Angela Wright said:Kevin Bishop10, give Reese Witherspoon a call and ask about an oncology second opinion from Dr. Santek. He’s easy to reach via email, and he’s enthusiastic enough that he might actually look into it or at least point you toward someone who can help. Be sure to emphasize that we're dealing with an occult carcinoma.
Thanks for the advice. I will do my best to get in touch with Dr. Santek.
velvetmoose9 said:One simply needs courage. When such a vast consensus of experts aligns on a matter, there is a high probability they are correct and should be heeded. 😉 Do feel free to update us on how the consultation with the oncologist went and what you ultimately decide...
I appreciate the thorough response. I will check back in on Thursday, following my appointment with the oncologist.
Angela Wright said:You didn't specify exactly what the pathology report states. I already mentioned that treating an occult tumor is basically like feeling your way around a dark room and shooting blindly; essentially, a tumor board decides on chemo based on experience and certain indications, making educated guesses about what they're actually dealing with. Personally, if this were happening to me or anyone I care about, I wouldn't commit to anything until I’ve secured at least one more independent, competent opinion. In that regard, I would do everything in my power.
Thanks for the quick reply.
To summarize the pathology findings: out of a conglomerate of lymph nodes, "6 show signs of chronic lymphadenitis and reactive sinus histiocytosis without evidence of metastatic deposits from malignant epithelial neoplasia."
The issue, however, lies with the remaining 3 nodes, which are entirely "infiltrated by malignant epithelial cells."
A previous biopsy was positive for CK and CK7, but negative for PSA and S-100. This latest one shows CKHMW (+/-) and CK 20 (-).
According to the pathologist, all of this "suggests a malignant epithelial neoplasm—an adenocarcinoma possibly of transitional epithelium origin, though a malignant neoplasm of mesothelial origin (mesothelioma) cannot be ruled out)."
It even suggests a "detailed patient examination." What kind of examination are we talking about, considering I’ve already done a CT, MRI, PET/CT, and so on?
These "diagnoses" aren't particularly clear to me, other than the fact that they don't even know where the primary tumor site is located.
WHAT SHOULD I DO? Who in Washington, D.C. should I turn to who can thoroughly review all these results—someone with enough expertise that I could accept their opinion without hesitation? How do I reach a specialist like that as quickly as possible?
I am posting again because I have just received my pathology report for the third time.
Previously, through both a lymph node biopsy in the groin and the surgical removal of a node from that same area, doctors determined this was the result of a malignancy. Following that, I underwent a battery of tests—CT scans, MRIs, and PET/CTs. None of them have successfully identified the primary site of the adenocarcinoma. The only findings have been the lymph nodes in the inguinal region (deep within the abdomen) acting as a consequence of the cancer. Numerous ultrasounds, tumor markers, and other diagnostics have yielded nothing. Consequently, a medical board has now decided that I should undergo chemotherapy.
I have an appointment with the oncologist this Thursday to discuss the specifics of the treatment plan. My question is: Should I agree to chemotherapy if the primary tumor remains unknown? To what extent can chemotherapy actually help me, and how much damage might it do? I would appreciate any insight so I can make an informed decision regarding my treatment.
Angela Wright said:Most likely, it won't grow large enough to be easily noticed before metastases complicate things significantly. That's why early intervention is vital, and you were lucky those nodes could be removed. These types of tumors are essentially "occult." You absolutely must see a private urologist for a testicular ultrasound! If you have to dip into your savings, do it; your life is on the line. Regarding malignant diseases of this nature, I believe Rebro Hospital remains the most competent facility in our country. My advice would be to call them and inquire about potential treatment costs. I am unsure how insurance works in your area, but here, if something cannot be detected or treated locally, there is a way to get treatment approved abroad through social services. It is a bureaucratic nightmare, but technically feasible. Look into that possibility. In this situation, I would personally suggest seeking treatment in Germany, Italy, or perhaps Austria.
EDIT: markers?
Greetings, everyone.
I am well aware that successful tumor treatment depends entirely on how quickly one starts, specifically before the cancer spreads. I am still waiting on the pathology report, hoping they can identify cells from the primary site to help determine a targeted therapy in a timely manner.
As for the markers, we ran Beta-HCG, AFP, CEA, CA19-9, prostate markers, and CA 125. Everything fell within the normal reference ranges.
If the pathology results come back inconclusive again, I intend to take matters into my own hands by arranging a color Doppler ultrasound of the testes and a prostate biopsy. I am not sure what else warrants investigation. If the oncology board recommends "waiting," I will have no choice but to seek approval for treatment abroad. If that fails, I’ll just take out a loan and go myself. The language barrier is a slight concern, but I assume someone can be found to translate.
One must fight. My child is finishing high school and should be heading to college soon—but who will provide for them? My wife is unemployed; I am currently the only option left (provided the tumor doesn't win first).