Support resources for families dealing with cancer and other serious illnesses

Linda Patel21 said:Hey everyone—today I said my final goodbye to my dad. It’s just been two months since he got his diagnosis (gallbladder cancer with metastasis). We didn't even get to the chemo stage; he wasn't a candidate for surgery, so they just put in a stent. Luckily, he wasn't in much pain, and until the very end, he was still talking about planting an orchard. He was getting confused sometimes, running fevers, losing his appetite... I tried so hard to make sure he had everything he wanted. I knew the end was coming, but man, I still held onto hope. I knew it would be rough, but I never expected it to hit like this... I miss him already—my heart is just aching, and I wish we could have had just a little more time. To be able to hug him again, rub his back, or even just have him give me one of those grumpy looks... anything. I haven't been on these forums for long, but I've met some truly wonderful and brave people here. So, I want to wish you all luck in your own battles—don't let them break you, and stay by your loved ones' side until the very end. My days are just filled with grief and tears right now, but then I try to remember the good times...

I am so incredibly sorry for the loss of your dad. Hang in there—right now it's brutal, trust me, we've all been through it, but you will get through this... eventually...

Linda Patel21 - please accept my deepest condolences! 😢

Angela Wright, you might remember me—I’m talking about my mother. She just finished five rounds of chemo, and the markers have dropped from 3000 down to 75 prior to this latest stretch. Even better, the fluid isn't pooling in her lungs anymore. Is she feeling better? Relatively speaking, yes. Compared to how things were, there is a noticeable improvement, though I suppose "better" is a relative term when dealing with this. The most difficult part is the exhaustion. She has zero strength left; even a few steps around the table leaves her completely spent. Most of her time is spent sitting or lying down. Now that she’s approaching her final treatment, I find myself wondering: should I pick up more beta-glucan for her? I've seen discussions here suggesting it's more effective to use it after the therapy is complete.

Jamie Chase said:Angela Wright, you might remember me—I’m talking about my mom. She just finished five rounds of chemo, and the results are actually looking up; her markers plummeted from 3000 down to 75 before this last round, and that fluid buildup in her lungs has finally cleared out. She’s feeling significantly better than she was, which isn't saying much given how bad things were, but it's progress. The hardest part right now is the exhaustion; she has zero energy and can barely walk a few steps around the table before needing to sit or lie down. I wanted to ask if I should get her more beta-glucan once she finishes this final treatment, since I've seen people on this forum suggest it's better used during the recovery phase after therapy.

That sounds like incredible news; it looks like the treatment is actually working. Definitely get her some beta-glucan. She's completely drained right now, and it should really help boost her strength and aid her recovery.

Linda Patel21, take my condolences.
Hang in there and try to find some peace of mind. You all did everything humanly possible. At the end of the day, that's just how that illness works.

Thanks for all the kind words, guys. Honestly, I’m struggling. It’s hard to wrap my head around the fact that he’s just gone. Just two months ago, he was talking about all these big plans for the future, and now? Nothing. Sometimes it feels like this pain is never going to let up, and every single day just gets harder. How does a disease even work like that—just destroying someone in two months flat? I can't stop spiraling, wondering if there was anything else I could have done. But everyone I talk to says the same thing: with bladder cancer, there’s just no fighting it. There's no help. The only thing keeping me sane is knowing he wasn't in pain. I know you all get it, since this is all I can talk about lately. Life keeps moving, I guess, but a huge part of my heart went with him. He was my rock, the one person I knew I could always lean on. I still can't even look at his stuff without breaking down. I keep expecting him to call... it's just too much right now. You guys are all so brave, but I'm really not. To anyone out there fighting this evil, I hope you win. Sorry for being such a downer, but this is just my reality right now...

Linda Patel21 said:Thank you all so much for the kind words. Honestly, I’m struggling. It feels impossible to wrap my head around the fact that he’s actually gone. Just two months ago, he was talking about all these big plans for the future, and now? Nothing. Sometimes it feels like this ache is never going to stop; every single day just gets heavier. It’s hard to process how a disease can just dismantle a person in sixty days. I catch myself spiraling, wondering if there was anything else I could have done. Every doctor and specialist I talked to gave me the same answer: there was nothing left to do. That specific type of bladder cancer is a monster; it offers no mercy. My only shred of comfort is knowing he wasn't in pain. I know you all get it because this is the only thing on my mind lately. People say life goes on, but a massive piece of my heart went with him. He was my rock, the one person I knew I could always lean on. I still can't bring myself to touch his things. I find myself waiting for my phone to light up with his name... it’s all just too much right now. You all seem so strong, but I don't feel brave at all. To everyone out there fighting this evil, I truly hope you win. Sorry for being such a downer, but this grief is just my reality right now...

Everything you're feeling right now is completely normal. We all hit this wall when we lose someone close to us. Let him rest in peace, and give yourself the grace to grieve and eventually accept this reality. Don't spend your energy looking backward—there's no undoing what happened, even if you feel like mistakes were made. None of us have a crystal ball; we all just do the best we can with the tools we have. For now, let go of the guilt and focus entirely on yourself. That’s how you survive this. If you need to step away from everything for a while, do it. You will get through this.

swiftpanther102 said:Apologies for bringing this up here, but does anyone know where I can pick some of this up locally? When you're dealing with terminal illness, hope is a necessity, even alongside palliative chemo, right?

http://www.realnews24.com/soursop-fr...-chemotherapy/

I'm familiar with it. I actually give it to my father, who's likely facing Stage IV lung cancer. We should have the bronchoscopy and CT results by Tuesday, which will pretty much just confirm what we already suspect... I'm putting a lot of hope into this, but you really have to dig through the research regarding contraindications. I'm not sure if I should drop a link here for where to buy it, so just shoot me a DM if you want it.🙂

Dear Linda Patel21, I truly understand what you're going through, and my heart really goes out to you regarding your dad. To be honest, I’m feeling just as lost right now. My mom was still working just two months ago; only a month ago, we were dancing around and joking each other silly, and just two weeks back, she could sit up and hold a conversation. Now, she’s stuck in a hospital bed, unable to move—except for those frustrating moments when things go wrong, like needing a diaper change or nearly falling out of bed, which is actually why, after literally five days of zero sleep, I decided it was time to move her into 😢 . She can't really talk anymore, aside from some muffled sounds or a quick "yes" or "no" when I ask if she wants something.

I feel like I'm drowning in this helplessness. I spend my time massaging her with lotion, cleaning her eyes, flossing her teeth, washing her hair, helping her sip water through a straw, or trying to feed her a few grapes (though half the time I have to fish them back out because she can't swallow properly). I sit there and talk to her for hours, hoping that any of it might make her life a little easier. But sometimes, it all feels so futile, especially when I find myself waiting for—and honestly, in a dark way, almost wishing for 😢 —the end. Looking back, I think I would have been more at peace if my mom had passed away sooner, while she was still herself and full of life.

Sending you my sincere condolences once again. I really hope you find some sense of peace and healing from this loss very soon.

Just checking in real quick... I just finished my 60th round of chemo and I'm moving right along. I wouldn't say I feel "great" per se, except maybe for the
toothaches, the constant nausea, my arms and legs going numb, and this nerve damage in my tendons. Plus there's the insomnia, hitting the bathroom about 20 times a day, my whole face and body breaking out in these nasty red rashes, and the non-stop gut pain from the actual disease—not to mention my liver taking a hit and dealing with some ascites. Throw in some weird blood pressure swings ranging from 100/50 up to 160/95, and yeah... I FEEL FANTASTIC. Hang in there, everyone...!!

Hang in there, wiredotter75! When is Erbitux finally hitting the market?

wiredotter75 said:Just a quick update... finished my 60th chemo cycle. Moving forward. I feel "great," except for...
toothaches, nausea, numbness in my limbs, nerve damage, insomnia, hitting the restroom 20 times a day, my whole face and body covered in red rashes, constant gut pain from the underlying illness, some liver issues, a bit of ascites, and blood pressure swinging wildly from 100/50 up to 160/95. I FEEL FANTASTIC. Hang in there, everyone...

Glad to see you're still fighting. Good on you. 👍

Angela Wright said:Hang in there, wiredotter75! When is Erbitux finally hitting the market?

It already started, man. Been three weeks now... I feel like a total teenager... just full of acne and crap...

wiredotter75 said:it finally started, been 3 weeks now... I'm basically acting like a moody teenager again... just full of attitude...

Man, unknown, I am SO incredibly happy for you that you're feeling better!!! Seriously amazing news!!! Just soak up life, enjoy the summer, find some love, and try to ignore the crap—as much as you can, anyway. Thank God you're on the mend, it’s honestly such a relief to hear! Catch ya later!

Angela Wright said:That is excellent news, as there appears to be a positive response to the therapy. Get her some beta-glucan; she is clearly exhausted, and it should provide the necessary boost for her recovery.

So, is it safe to administer beta-glucan before the final round of therapy? Is there any risk of a counter-effect?

Jamie Chase said:So, could she take beta-glucan before her final round of treatment? Is there any risk of side effects getting in the way?

Honestly, I think it might actually help her recover and find the strength she needs to power through this last cycle.

So, my dad's starting chemo using the PE protocol—you know, the one based on platinum. He just kicked off his third cycle today (the three-day version), and since tomorrow is a holiday, they're just handing him some pills to take at home instead.

Does anyone know what kind of side effects we're looking at? And honestly, is taking it in pill form actually the same thing as the IV stuff? What should we be bracing ourselves for?

swiftpanther102 said:So, Dad's doing chemo based on the PE protocol (platinum). He started his 3rd cycle today (the three-day kind), but since tomorrow's a holiday, they’re just giving him a pill instead..

What's the deal with the reactions? And does taking it as a pill actually work the same way????!!! What should we be looking out for?

Which chemo are we talking about here? For what kind of cancer?? Are you guys referring to FOLFIRI plus oxaliplatin or something else?

Hey everyone.

I'm in desperate need of some help decoding this medical report. I couldn't find any "Ask a Doctor" sites online—hoping there might be some folks here who speak the language—so here’s what we're looking at:

Medical History
diagnosis: adenocarcinoma of the lower lobe of the right lung
diagnosed: 02/2013
cytology: adenocarcinoma
disease stage: T3N0M1b
surgery: none

Completed 4 cycles of chemo so far, plus radiation to the brain (10 fractions x 3 Gy, finished 4/10/2013)

diagnosis:
adenocarcinoma of the lower lobe of the right lung
metastasis to liver and adrenal glands
multiple brain metastases; history of brain irradiation
status after other chemotherapy (PE IV)
History of irradiation for cervical cancer (XX sessions)
secondary anemia

CHEST CT, ABDOMEN CT:
Native MSCT scan of chest and abdomen performed on 7/29/2013 for patient XY with diagnostic findings of adenocarcinoma of the right lower lung lobe (stage IV) and multiple brain metastases. In the scanned areas of the neck base and both axillae, several lymph nodes are visible, measuring up to 1cm. In the middle mediastinum, several lymph nodes measure up to 1cm in long axis. Within the parenchyma of the right middle lobe, a spindle-shaped infiltrate measuring 5.6x2cm is noted, with partially spiculated edges spreading toward the visceral pleura, showing morphological characteristics of a bronchoproliferative process. Near the ventrolateral part of the described mass, a small 2-3mm nodule is present in the right lower lobe parenchyma; further out, two small nodules measuring 4-5mm are seen in the right lower lobe. In the apical part of the left lower lobe, there is a 7mm nodule. No pleural effusion. In the scanned proximal abdomen, the liver is riddled with multiple hypodense lesions ranging from tiny spots to a largest one near segments V and VI, measuring 9mm.
The pancreas, spleen, and both kidneys appear normal with no visible lesions on the native scan. A small kidney stone is noted in the collecting system of the right kidney. At the junction of the branches of the left adrenal gland, an oval, solid, expansive mass measuring 12mm is visible, highly suspicious for a secondary lesion. The morphology of the left adrenal gland itself appears normal. Several lymph nodes in the retroperitoneal lumbar region measure up to 12mm.

Impression:
Patient XY was referred for evaluation, which determined stable clinical status with stationary findings in the lungs. Abdominal CT confirmed newly developed secondary changes in the liver parenchyma; continuation of treatment with second-line chemotherapy is indicated.

What I'm specifically hung up on is the underlined part. Does all this mean the original tumor in the main bronchus—which already spread to the brain—has somehow vanished from the lungs, only for a new metastasis to pop up in the liver? Is that even possible?

I would seriously appreciate anything anyone can throw my way—whether it's translating this gibberish, offering advice, or just a bit of clarity.

Thanks,

So, is it actually possible for new metastases to pop up while someone is still undergoing chemo—like, specifically hitting the liver? And if they do, can surgeons even step in to cut them out? I’m assuming if they just appeared, they’d be tiny...

Also, could use some help deciphering this bit

Disease stage: T3N0M1b

Metastasis in the liver and adrenal glands
Multiple brain metastases; history of brain radiation therapy
Status post chemotherapy (Stage IV)
History of cervical radiation therapy (XX sessions)
Secondary anemia