brisklynx62 said:Just wanted to let everyone know that after an 18-month battle... which was about 13 months longer than what several doctors predicted... my mother finally found her peace yesterday morning. A place where there's no more pain or suffering. 😢 She fought so hard. Honestly, she was incredibly brave, enduring things we can't even wrap our heads around, all while dealing with unimaginable pain... even with massive doses of morphine.
But it's over now. It's done. The pain is gone.
Goodbye, Mom. Until we meet again. Thank you for everything. ♥
I never thought I’d be posting on this thread, but here we are... my mom suddenly started having these weird pains in her pelvic area, fluid in her abdomen, and everything pointed toward the worst case scenario. After some bad ovarian markers and all the testing, she had surgery a week ago where they found out things are looking pretty grim. 😢, everything in her abdomen is affected; they took out whatever they could, but they couldn't get it all. So, ovaries, uterus, part of the bowel—they said the bladder looks okay. Apparently, it started from the peritoneum and had been developing for years without any symptoms. She’s in the hospital now, recovering slowly... chemo should start in about a month. I'm in total shock; I guess I'm still too young to be dealing with all of this. It’s hard, just really hard... but yeah... I wake up every day with some kind of new hope. If anyone else is going through this or has been through something similar, please reach out, because I have a few questions. 1. What does 6 cycles of chemotherapy actually entail? 2. Is there anything proven that helps with strengthening during recovery? 3. Are there any supplements (even alternative ones) that help ease the side effects of chemo? 4. Diet... does anyone have advice or recommendations on what to eat?
Thanks so much for any answers.
There are others here who will probably give you better answers than I can, so I'll just send you a huge hug. I know how you feel because I'm going through something similar with my dad, and I know how tough it is—way too tough.
Angela Wright said:I wouldn't touch walnut, personally. It’s an alternative remedy, and there isn't really any solid evidence for it. From what I understand, they don't grow anything else in the areas where walnuts are planted because they leak toxins into the soil. I just wouldn't risk experimenting with it. As for the association, it doesn't exist anymore. The site will probably go dark soon too, which is likely why everything is read-only now.
Wait, since when did the association stop existing? Seriously? We need groups like that more than ever, especially since they're so hard to find these days. This is getting ridiculous. Honestly, I can barely even look at this forum anymore. I just hope they haven't wiped everything out; there was so much useful info here. It’s a real shame the forum couldn't stay active somehow. People need places like this—somewhere to ask questions, vent, or actually learn something new. It’s just a waste.
Angela Wright, I’d love to get your take on my last post. And I messed up—it wasn't oil, it was actually black walnut tincture. One more thing, how do you even sign up for the Curiosity Foundation forum? I can't seem to make it work no matter what I try.
My dad was prescribed Pfizer for his chemo at home. He’ll be taking 4.5mg, four times a day, for five days. I guess I'm just wondering if anyone here has dealt with them before? Also, something else is bugging me. He started taking black walnut oil about eight days ago, and he was supposed to finish a full 21-day course. Now I'm stuck thinking—should he stop taking it while he's on the chemo so it doesn't mess with the treatment? But then again, if he stops now and tries to start back up after the chemo is over, I don't know if it'll even work the same way.
Angela Wright said:Every chemo drug has a specific dosage calculated based on the patient's height and body weight. It’s all strictly regulated by protocols established through years of clinical trials. There are also set intervals for when the therapy is administered. If things don't show the expected progress after a while, the patient is taken off that treatment and they look into the next line of therapy—basically, moving to a different drug—and it keeps going until there are no options left. Unfortunately, many people overlook available options while they're still in relatively good shape. Chemotherapy is an incredibly invasive and toxic way to treat someone; once signs of worsening appear during treatment, you can't just keep poisoning them and destroying their quality of life. When treating cancer, maintaining quality of life is just as much of a priority as extending it. Don't worry about what everyone else is doing because you don't really know what their situation is. You HAVE to focus on the here and now, and on your dad. Put your own fears and misery aside, because if you don't, everything is just going to go downhill fast.
Angela Wright, thanks so much for this and for all your other replies. I know I need to stay focused on the present. Even if I am, I just felt like I needed to understand certain things for the future. My dad got out of the hospital today and headed home; he'll be taking chemo in pill form for a week. I'm not sure which pills yet, so I'll ask you once he gets them. He still hasn't regained his voice. The doctor said it probably won't come back, and that's what's killing him. It's really eating him alive. And his cough... it's driving me crazy. It just won't stop. I don't get it. He was on Codeine for two weeks, but the doctor told him to stop taking it. Things actually seemed a bit better when he stopped, then he started radiation—five sessions on each side of the neck—and things improved slightly again. But now that the radiation is over, the coughing is back and it's insane. When I asked the doctor why he won't stop coughing, she just said there are too many nodes in his neck and they can't do anything about the cough. It's terrible. Any change in temperature, any move from a heated room to the cold, and he's stuck in a coughing fit. It's a disaster. I'm hoping this chemo helps with that, but I'm scared because the doctor mentioned this one is stronger than the IV ones he was getting, so I'm worried about how he'll handle it. I'm praying to God that he handles it as easily as possible and that there aren't too many side effects.
I'm wondering if there’s actually a set limit on how many rounds of chemo someone can go through. My dad is starting his eighth round next week, and this time it'll be in pill form. And when do they just... stop? When do doctors decide it's enough and basically tell you, "this is as far as we go, and from here, it's up to fate"? I guess I spend way too much time spiraling about the future instead of focusing on right now, but I feel like I need to know certain things so I don't get blindsided by whatever the doctor says. I never really thought about the limits of chemo until I saw what happened with a guy in my dad's department. They just sent him home and told him there was nothing left to do. His cancer had spread to his brain, but the whole thing felt so strange to me—he was still mobile and could handle most things himself, yet they essentially just let him go home to die. I don't know the full story, so I can't say for sure what went down, but I know what I saw and what I heard.
Angela Wright said:Look, this kind of diagnosis pops up all the time. Treatment protocols are basically decided on a global scale first, and then countries just adopt them at the national level—which is exactly what happened here in America. It’s the same deal whether you're dealing with metastatic or non-metastatic disease. Unfortunately, the whole nature of microcellular lung cancer... The thing about this kind of cancer is that once it starts metastasizing, things can spiral out of control pretty fast. Once you hit that stage, the whole goal shifts toward slowing down the progression as much as possible. When curative medicine hits a wall and just can't do anything else, palliative care steps in. It’s all about managing pain and dealing with the side effects of the disease to actually give someone some quality of life. In the US, this kind of care is standard practice and has been for a long time. Here? We’re still stuck in the early stages. We basically only have one public hospice facility in San Francisco; everything else is just private clinics staffed by people who aren't exactly specialists in this field.
We never even considered anything like hospice care. For now, Dad is still mobile and able to handle things on his own, so we’re just hoping he can stay that way for as long as possible. Where else can I look for solid info on palliative care besides these forums? I really don't want us to end up in a situation where the care is subpar and we're stuck hunting for answers on internet message boards.
Angela Wright said:Nancy Lee, you should probably reach out to him, though he’s mostly useful for those rare types of tumors and specific scenarios. I guess I agree with Sandra. Unfortunately, when you're dealing with small cell carcinoma that's already metastasized, the treatment options are pretty much the same everywhere; maybe the only difference is that palliative care is slightly better abroad. 😢
But what about small cell cases where it hasn't metastasized yet? Is the treatment here different from what they do overseas? And in what way exactly is the palliative care better over there?
Angela Wright said:Kevin Bishop10, maybe call Reese Witherspoon and ask for an oncology second opinion from Dr. Santek. He’s pretty easy to reach via email, and he's enthusiastic enough that he might actually look at it or at least point you toward someone who can help. Just make sure to mention it's an occult carcinoma.
Is Dr. Santek generally open to giving second opinions? My dad's situation isn't great; metastases showed up on the other side of his neck and in his chest. Right now, he’s undergoing radiation on both sides of his neck, and after that, he'll start oral chemo for a week at a time. The doctor mentioned this pill-based chemo will be tougher than the IV stuff he was getting before. The prognosis isn't looking good, so I guess it wouldn't hurt to seek a second opinion. I think I've asked this already, but I'm wondering if microcellular treatment is the same here as it is abroad—like, does it even make sense to take him overseas? When I brought this up with Ms. Karabatić over at the Jedar association, she told me things are basically the same everywhere, implying they couldn't do anything more out there than what we have here in the States.
Angela Wright said:I know it’s a hard pill to swallow, but it’s really the only answer there is. Denying it just makes everything worse. Eventually, whether you hit a wall because you're exhausted from fighting it or you finally just use some common sense, you have to accept the reality of the situation. Don't waste all your energy obsessing over questions that won't give you a satisfying answer. Focus instead on how to make things easier for him.
A friend once told me something that absolutely crushed me and left me feeling incredibly frustrated at the time, but looking back, she was dead right: When I asked her "why?", she just looked at me and asked, "Why not?" In what way is my old man any different from her old man, or any of the other 25,000 people dealing with this in the US? What makes her better, or more privileged, or stronger—whatever—that would somehow spare her from this?
The whole thing is just one big mess, and messes happen. The point is how you handle the mess.
Right now, I'm not handling it at all. That's the problem, I guess. I need to pull myself together.
crimsongull20 said:And I guess it’ll take me some time to convince her. Unfortunately, she heard some rumors that the doctors in our Small town, USA are bad, and she has this tendency to believe just about anything anyone tells her—then she just stubbornly sticks to it.
We aren't making any treatment decisions without consulting Nurse Sandra, obviously. But given her current biases, it'll probably take me a few weeks just to steer her toward the clinic in our Small town, USA. Honestly, I'd rather just take her to a private consultation, maybe with someone really good who also works at the local clinic. If she actually likes them, everything will be a lot easier.
You should definitely reach out to Nurse Sandra. Based on what Angela Wright suggested, I reached out to her too, and she was honestly wonderful and helped me so much. Angela Wright, thanks again! As for the doctors in our Small town, USA, they aren't bad. The biggest issue is just that they're slammed. They basically get five minutes per patient and that's it. I mean, they'll answer your questions, but the whole thing feels incredibly rushed. Even so, I think they really do care about their patients.
I just can't accept an answer like that. Especially now that his mental state has taken such a dive and his test results are looking even worse... The whole thing is just a massive pile of crap.
I honestly just hate my dad's illness so much... Some days I get so incredibly angry I feel like I could scream for hours on end. But even then, I guess it wouldn't even help get all this negativity out of my system. I just can't stand it. Why does this even happen? What's the point of all this misery???
Dad took his Augmentin, and the fever seems to have broken. But the coughing... man, it’s terrible. It’s honestly scary to listen to. I don't really get why neither the Codeine nor anything else has touched it. He was admitted to the hospital today, so I guess we'll just see if things start looking up.
When you're dealing with a cough from lung cancer, what actually works besides Codeine? My dad's coughing is brutal; he's been taking Codeine for two days now and it barely makes a dent. He can't even speak anymore, just whispers.
I’ve mentioned before that my dad has small cell lung cancer. So far, he’s gone through two rounds of chemo—which he handled pretty well—plus 25 radiation sessions. On the very last day of radiation, he noticed something, I guess. He felt a lump on his neck, so they did a biopsy immediately and confirmed it was a lymph node metastasis. After that, he started a third, more aggressive round of chemo. He struggled with this one a bit more; by the second day, he was vomiting and couldn't keep any food or water down. By the third day, things seemed okay again. Now, about that metastasis... Honestly, I'm pretty angry. He spent a month and a half at a facility in Jordanovac, and yet he was the one who actually found the lump himself. It makes me worry—who knows if that's the only spot? They haven't sent him for any extensive follow-up testing. I wonder if a PET scan would help pinpoint exactly where everything has spread. It just doesn't make sense to me that they'd just leave it alone after finding a metastasis. He’s heading back to the city in three weeks for more tests and his fourth round of chemo. There's also the matter that, up until now, the doctor has been really positive. Everything seemed to be going great. After the first round of chemo, it didn't seem to be spreading anymore, and after the second round and about ten radiation sessions, when they re-checked everything, she even told us it had shrunk slightly. So how does this happen all of a sudden? I mean, I realize with small cell it can change overnight, but this really caught us off guard. Does this metastasis mean it's headed toward the brain, or is there some way to stop it or at least slow it down?
Like I mentioned before, my dad was diagnosed with small cell lung cancer. He’s already finished two rounds of chemo and he's currently undergoing radiation. They’re looking at 35 sessions total. Is it actually normal to go through that many radiation treatments all at once? Right now, he's heading in every single day, and then they'll decide if he needs another round of chemo depending on how he holds up. It just feels like a massive amount of radiation to me, so I guess I'm wondering if this is standard practice. What usually happens after a stretch like this—more chemo, or something else? I know everything depends on his specific condition, but I'm curious if anyone here has dealt with something similar. And is it even possible that they might put him through another full course of radiation after this one finishes?
One more thing. I know you aren't supposed to take immune boosters while doing chemo, but does anyone know how they affect radiation?