Support resources for families dealing with cancer and other serious illnesses

Greetings, hero!

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!

Just got back from work... lucky me, thanks to my coworkers who hold it down for me as long as they can before letting me go.
First off, Kevin Bishop10, I’m not just saying this to be nice—I genuinely, deeply care about you guys fighting this. You’re actually in a better spot than I am (though I know every case is different and you guys can totally beat this and recover).
So, look, that formula works like this in your situation, and honestly, in pretty much any case. You take the neutrophil granulocytes percentage and multiply it by the WBC, like 0.43 x 3.3 = 1.419. That’s right on the edge, but hey, oncologists obviously know their stuff better than I do. It’s supposed to be 1.5. My worst was 0.30 x 3.7, which puts me at almost 1.0... but last time it was actually great, like 0.50 x 5.5. At least, that's what I've picked up... if there's an actual EXPERT here, please correct me if I'm wrong.
Anyway, I REALLY WANT TO BEG YOU ALL TO KEEP FIGHTING. It sucks. It's hard as hell, seriously. But there's a certain satisfaction in the fight, even if you only get one good day out of a 22-day cycle. I don't have anyone else to lean on—no partner, no kids. Just my Mom, my dog, my Dad living on his own, and my brother living out of town... I walk the dog, he sleeps with me day and night... and I fight. I'm telling you, you gotta fight. Even when the symptoms hit hard—this time they wrecked me for 9 days straight—but once they pass, it feels like someone pulled me out of a deep well and I finally caught a breath of air. If my blood counts look okay this Wednesday, I'm heading in for chemo round 56.
Best of luck to everyone!
Regarding the Aloxi, I think this is how they dose me: Peptoran, Apurin, Dextasone, Tramal, then Aloxi, followed by Leucovorin and Oxaliplatin, then the 5-FU via IV and infusion. Then the next day, it's more Leucovorin plus the Peptoran, Dextasone, Tramal, and Aloxi, and I think it's 5-FU again... maybe? I think I get Aloxi twice, but I'm not 100% sure.

And honestly, I'm not even sure if I'm getting Dextamethasone anymore. I can't remember how much I've had, and frankly, I don't really care. I know I always track it when it's Campt and Irtec, then Leucovorin, Avastin, and 5-FU... and then the next day it's the same Leucovorin and 5-FU... along with Emend.

Thanks so much for the response...

Mom had to take 80 tablets of dexamethasone before chemo—presumably to preempt any allergic reactions—and apparently, that’s going to be the routine every single time...

She was taking beta glucan prior to starting, but they told her to hold off during the actual chemo because they aren't quite sure about potential contraindications. So now, at my suggestion, she’s switched to Imunobran since we’ve heard from several people how great it is for immunity and protein levels; we might even pick up some enzymes to go along with it, and she’s also taking native propolis.

For two months now, she’s been drinking aronia juice every day, along with a beet-carrot-apple blend—everyone in the house is drinking it with her, really; it’s become our "rule" for maintaining her blood work. Her counts have actually been excellent, especially her erythrocytes. The only outlier is her leukocyte count, which remains high—but that’s just due to the constant low-grade fever she’s running as a result of the illness, which is why they cleared her for chemo in the first place.

She hasn't dealt with massive side effects yet, though she didn't eat anything for three days straight. Strawberries and yogurt seem to be the only things her stomach can handle right now. Her appetite has started returning after ten days, but she’s still dealing with those tingles and this profound weakness... she is exhausted, just utterly exhausted...

The situation is difficult because fluid is constantly building up, and she’s already had to undergo three paracentesis procedures...

I’m pushing her to try that Aloxi, but if it only helps with nausea, we’ll have to see; honestly, she said it was manageable so far. She only vomited three times over a four-day period, and even then, it happened when she took certain pills—strangely enough, not from food. She’s had nausea, but everything has been relatively tolerable thus far...

Hang in there. They say willpower works miracles, and it’s not just a cliché, right? We are standing right here with you. 🙂

I’ve been reading through everyone's posts, but since my health situation has taken a seriously dangerous turn, I’ve ended up back in the hospital—likely for at least five weeks now. It's making it pretty tough to type everything out on my phone. Hang in there, everyone.

Angela Wright said:I’ve been reading everything, but since my health situation has taken a really dangerous turn, I’ll probably be stuck in the hospital for at least five weeks. It’s hard to type on my phone. Hang in there, everyone...

Man, I'm so sorry. Keeping my fingers crossed that everything turns out okay. 🙂

Hang in there—I’ve been through some pretty similar stuff myself, so I'm definitely thinking of you.🙂🙂🙂

Angela Wright said:Hey everyone, I’ve been reading through your posts, but things have taken a pretty scary turn with my health lately. It looks like I’ll be spending at least five weeks in the hospital, so typing everything out on my phone is getting to be a real struggle. Hang in there, everybody.

Just take care of yourself and stay strong. 😉
And please, check in with us whenever you can to let us know how you're doing...

Hey everyone, thanks for all the support and for looking out for me. They went ahead and gave me my last dose of dexamethasone just in case the baby needs to come early. My blood pressure is holding steady for now, blood work looks fine, though my protein levels are right on the edge. On the bright side, the little one is doing great—we're at a solid 1800g for 31 weeks. I’m really hoping I can hang in there and make it at least until week 36. Honestly, I’m terrified of that HELLP syndrome situation happening again; they told me if things take a turn, they could have me in delivery within five minutes, and I'm definitely scheduled for a C-section.

Angela Wright said:Thanks to everyone for the support and for checking in. They gave me my last Dex just in case the baby has to come early. My blood pressure seems steady for now, bloodwork looks okay, though protein levels are right on the edge. Little one is doing great, though—sitting at a solid 1800g for 31 weeks, so I’m really hoping I can hang in there until at least week 36. Honestly, I'm terrified of that HELLP syndrome kicking back in. They told me they could have me in delivery within five minutes if things go south, and yeah, I’m definitely going in for a C-section.

Hey Angela Wright, hang in there!!!🙂

Hang in there and good luck to you both!

Angela Wright, I'm crossing my fingers that you can make it through another few weeks without any complications. I trust you're in good hands, just hang in there. 😘

Hey everyone, I’ve been lurking on this forum for a while now, but today I’m the one stepping up because I really need some advice and maybe just a few kind words to get through this.
It’s about my Dad—he’s 55, and until recently, he was a totally healthy guy. He used to smoke, but he quit five years ago after having a heart attack, and he was always pretty active with sports... Then, about three months ago, things started going downhill. He had constant diarrhea—several times a day—for about three weeks straight before it finally settled down. About two months ago, he started getting this pain in his right groin; he just chalked it up to a strain from playing a more intense game of table tennis, but then his lower back started acting up too. In the meantime, I practically forced him to see his doctor because of those bathroom issues, and we sent him in for blood work, urine tests, and stool samples to check for occult blood. His blood work looked great, aside from an elevated GGT, and his urine showed a tiny bit of erythrocytes and calcium oxalate, but everything else seemed fine. Out of the three stool samples he provided, only the third one came back positive for occult blood. Next steps were an abdominal ultrasound and a colonoscopy. The intestines looked fine—nothing found there—and the ultrasound showed all his internal organs were normal except for the liver. The liver is riddled with multiple echogenic nodules, some as large as 48 mm, which look suspicious for metastases. Since the ultrasound happened before the colonoscopy, the radiologist suggested they might be metastases from the bowel (since that's usually how it goes with men). However, the colonoscopy ruled out the large intestine as the culprit. That procedure was done on May 31st—so about a week and a half ago—and then, just a day later (on Saturday), my Dad ended up in the hospital because of GI bleeding. On Monday, he had a gastroscopy, and they only found two ulcers in the duodenum—which probably bled because of all the painkillers he’d been popping over the last week or so for his back pain—but his stomach and esophagus looked okay. They did another ultrasound, and the liver hasn't changed, but everything else looks normal. His tumor markers are mostly fine, though CA 19-9 was slightly elevated (49.1 when the limit is 37) and CYFRA was at 9 (limit is 3). We had an abdominal CT on Friday, and yesterday they repeated a CT of his upper body along with X-rays of his lungs and bones. He also saw a rheumatologist and a urologist; kidneys and prostate are fine, and his lungs look clear too. But the CT results were devastating: it showed metastases in the liver (the whole thing is affected) and metastases in the pelvic bones, the lumbar and cervical spine, the rib cage, and the shoulder blades. The oncologist decided today that they won't be treating him—they're just going to give him pain management. The absolute worst part is that they have no idea where the primary tumor actually is. Every single test we've done so far has failed to find the source. They won't even perform a biopsy on the metastases because his liver is in such bad shape that it isn't producing enough platelets, making an internal bleed too dangerous. We are obviously going to seek a second opinion, even though I'm painfully aware that we're looking at a terminal stage. I just can't wrap my head around the fact that they won't offer any kind of therapy—that they won't even try *something*. Tomorrow, we also have to get a mole on his back checked out, just in case it turns out to be melanoma, and then we'll see where we stand.
Does anyone have any advice on what to do in a situation like this? We aren't from Chicago, and since none of these tests were done in Chicago, we're planning to head there to hunt for a second opinion. But where should we go, and who should we see? And is there any way to actually figure out where the primary tumor is hiding?
Please, if anyone has any advice at all—anything!!!😢

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!

Hey everyone.
It’s been about a month since my Mom passed away from lung cancer, and now... a friend is slipping away too. I’ve become completely obsessed with digging for the cause—it's like I can't stop. I truly believe there's an answer for everything if you look hard enough. Right now, I'm pretty much hyper-fixated on bitter almonds and anything else with a bitter profile. It feels like there might be something there... honestly, living in Florida, things just feel so heavy lately.

Jessica Doyle69 said:Hi everyone.
It’s been a month since my Mom passed away from lung cancer, and now I’m watching a friend slip away. I am completely obsessed with finding the root cause. I truly believe there’s a solution for everything. Right now, I’m fixated on bitter almonds and anything else with a bitter profile. It feels like it might actually be the answer. Honestly, living in Florida... man, it's just a lot.

Highly recommend reading this:
Cancer isn't some new phenomenon; it's always been around and it always will be. This book should help clear things up and give you a much more grounded, realistic perspective. Getting too obsessed isn't healthy—it can lead you straight into a hole.

@Rachel Wood27/">@@Rachel Wood27 definitely needs to get a second opinion, maybe even a PET scan. But honestly, it's hard to give advice when I'm right there in the trenches too... I'm currently on my 56th chemo session. It's going okay, I guess. A little nauseous, bloodwork looked fine, but unfortunately, my markers jumped from 6 to 8.4, which has me pretty worried about progression. But whatever, gotta keep pushing forward, I guess. @Kevin Bishop10/">@@Kevin Bishop10 where you at?

It’s been almost two months since the surgery, and his pancreas is still "leaking." He had stomach cancer, so they ended up removing his spleen along with a chunk of the pancreas. Honestly, he's doing okay given everything else, but we’re getting pretty worried because he’s putting out about 700-1000 ml of pancreatic juice during the day—it’s just draining out through the upper part of the incision into the drain bag. If anyone has any advice, I'd appreciate it.

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!!!

Hey Kevin Bishop10, I honestly feel like you gave up a bit too early on getting a second opinion from overseas regarding your exact diagnosis. I totally get where you're coming from, but that’s exactly why I think you should find a way to dig deeper and get more answers. If you don't, you'll just be left guessing when it comes to making big decisions about your treatment plan.
Don't let this get the best of you—don't let the illness call the shots. Fight it with everything you've got!

I'm holding steady, but I'm under strict supervision. I'm 32 weeks along now, and just yesterday I got word that if everything stays on track, we'll be looking at a C-section at week 37. They're worried labor won't start naturally given all the risks that have piled up. The most important thing is that the baby is doing great and progressing perfectly, which is a massive weight off my shoulders. Sending love to everyone from the Holy Spirit area.

My dad's been home since Thursday, and we're just counting down the days until Monday when he has his follow-up appointment at the Mayo Clinic. He’s seeing the same surgeon who did the colonoscopy, so we're hoping they'll refer him to an oncologist and keep him inpatient so they can finally run those pending tests—the PET/CT and the biopsy. He’s still incredibly weak, honestly just lying there most of the time. His spine is killing him, too; he's wearing a brace, but it barely touches the pain, so he’s taking an extra Lumidol in the morning and evening just to cope. If it wasn't for that ulcer bleeding, I don't think he'd be in this state right now. We're trying everything to fix his blood counts because the anemia is hitting him hard—even though despite the tumor, his labs were fine when we checked them a month ago. We've been giving him beet juice and raw beets, plus some natural propolis to help his immunity. He was also prescribed Prosur and Ensure to drink, but he’s just not feeling it, so he won't touch them. We aren't forcing him, though—at least he still has a decent appetite and eats normally for breakfast, lunch, and dinner, which is one small mercy. The hardest part for him is the loss of mobility; he can barely get on his feet, let alone walk to the bathroom or even across the room. It makes sense, given how much the tumor has hit his pelvis and lower spine. He doesn't even realize how bad the bone involvement is. He knows about the liver issues, but from what we can tell, the doctor hasn't mentioned the bones yet, and we don't want to either—not while he's home, anyway. We don't want to trigger a depressive spiral when things are already this brutal. It’s heartbreaking because just three weeks ago—barely a week before the ulcer landed him in the hospital—he was out in the woods for hours every day picking mushrooms. Even with the pain back then, walking actually made him feel better. Now? He's completely helpless. Just trying to get up to go to the restroom is such an ordeal that his heart rate spikes over 100 and his blood pressure drops. When he's just resting, his BP is normal. He had a heart attack four years ago and has been on blood pressure meds since then, but he isn't taking them currently and his pressure stays steady.
I honestly don't know what to say. It's gut-wrenching seeing him like this, and I feel so powerless to help. I'm really holding out hope that they'll start some kind of treatment, maybe even radiation on his spine just to take the edge off the pain. Despite everything, I’m staying optimistic—I am not giving up, no matter what.

Kevin Bishop10 and wiredotter75 — hang in there and don't lose heart. It’s all going to work out! I truly believe that.
I'm not letting my dad go. It's not his time yet.