Support resources for families dealing with cancer and other serious illnesses

Oh, casualrider21, my poor dear... this is just so heartbreaking..
I spent the entire morning at the hospital today because Mom had surgery. It’s colon cancer with several metastases in the liver. She’s been fitted with a stoma bag—the primary tumor is out, but what about those metastases? Can they actually be wiped out with radiation and chemotherapy? Does anyone here have any experience with this?

Anything is possible... you just have to fight and do absolutely everything in your power to make sure that bastard dies...

Sam Murphy33 said:Oh my god, dear... this is just heartbreaking..
I spent the entire morning at the hospital today; my mom had surgery. It’s colon cancer with several metastases in the liver. They’ve fitted her with a bag—the primary tumor is external now—but what about those metastases? Can radiation and chemotherapy actually wipe them out? Does anyone here have any experience with this?

My dad went through surgery for colon cancer with multiple liver metastases just a year ago.
He completed 12 cycles of chemo and he’s doing great... he eats, drives his car, does a little work, and lives a totally normal life.......
Throughout those 12 rounds of chemo, there wasn't even a single change in his liver; nothing grew, nothing shrank, everything just stayed exactly as it was a year ago.
The doctors gave him such grim prognoses that if things had gone by their book, he wouldn't be alive today, and I certainly wouldn't be sitting here telling you how he's back behind the wheel.
I always hold onto the idea that only God decides when the candle burns out.
Hang in there.
If there is anything at all I can do to help, I'm right here.
kisses

cosmicviper76 said:My dad had surgery for colon cancer a year ago, and he had quite a few metastases in his liver.
He went through 12 cycles of chemo and he’s doing well... he eats, drives his car, does a bit of work, and just lives his life normally.
During those 12 rounds of chemo, nothing changed in his liver—it didn't spread further, and it didn't shrink either; everything stayed exactly the same as it was a year ago.
The doctors gave him prognoses that suggested he wouldn't even be alive today, so I wouldn't be telling you that he's out there driving around if it wasn't true.
I always hold onto the idea that only God decides when the candle goes out.
Hang in there.
If there's any way I can help, I'm here.
kisses

Oh man, thank you so much for responding. The surgery happened, but they weren't able to get the whole tumor out since it had already spread to the small intestine... You've actually given me a little bit of hope. She came to the ward today and she's on an IV right now; she seems pretty sedated, but I spent almost three hours with her and I'll be heading back tonight. Thank you so much once again.

casualrider21, my sincere condolences...

Sam Murphy33 said:Oh man, thank you so much for getting back to me. The surgery is over, but they weren't able to get the whole tumor out—it had already spread to the small intestine... You’ve given me a little glimmer of hope, though. She came to the ward today and she's currently on an IV drip; looks like she might be under some sedation, but I spent nearly three hours by her side and I'm heading back again tonight. Thank you truly, once again.

You'll see things start to look up. When my dad went through his surgery, he was skin and bones—he couldn't even manage a single bite of watermelon, and honestly, we were terrified.
Now, the guy can polish off a whole roasted chicken.🙂
Just stay by her side as much as you can. Having that mental strength is absolutely vital in moments like this... it made all the difference for my dad, and it actually helped him bounce back physically afterward, too...
Both you and your mom are in my thoughts.
kisses

I really appreciate you saying that; your words truly mean a lot to me...

Hey everyone,

I’ve been lurking in this thread for a while now... honestly, I haven't really jumped in because, man, this whole thing is just too heavy. I didn't feel like I had anything smart or helpful to contribute.

A few years back, my old man was diagnosed with sarcoma in his lungs. He went through surgery and everything looked solid on the scans until recently, when he suddenly developed an effusion. He’s just finished up with chemotherapy, and we’re basically stuck in limbo right now, just waiting for more tests to come back so we can figure out the next move.
I haven't been able to dig up much actual info on this specific type of sarcoma—not even searching in English—so I was wondering if anyone here knows where I can find more details? I'm looking for anything regarding treatment options, specific protocols, new drugs, or whatever else might be out there.

William Cox6 said:Hello everyone,

I’ve been lurking in this thread for quite a while now... but I haven't found the words to jump in. Honestly, reading through all this is just too heavy, and I wasn't sure what smart thing I could possibly contribute to help.

A few years back, my father was diagnosed with sarcoma in his lungs. He went through surgery, and everything seemed to be tracking perfectly fine until recently, when he suffered an effusion. He’s just finished his chemotherapy, and we’re currently in that agonizing limbo, waiting for more tests to come back before we even know what the next move is.
I haven't been able to find much substantial information regarding this specific type of sarcoma—not even in English—so I was wondering if anyone here knows where I might dig deeper... specifically regarding treatment protocols, options, any emerging drugs, or anything similar.

Which specific type of sarcoma are we talking about? And was it primary to the lungs, or was it a metastasis?

Otherwise, on our site you might find some more detailed data (written in English) regarding sarcomas.

I really need some urgent advice from anyone who might have been through this. I’m battling bronchus cancer, and it’s been a rough six months because the standard chemotherapy just hasn't done anything for me. Because of that, my doctors switched me over to Tarceva, which I've been taking for about 12 days now. Honestly, it’s been brutal—I’ve been dealing with constant vomiting and rashes, not to mention everything else, but the thing that’s truly breaking me is the pain. It’s this relentless, constant ache that won't let up, or it hits me in intense waves for several hours at a time. Even using Voltaren suppositories doesn't touch it, and I'm currently using 75mg Durogesic patches, which seem to be doing absolutely nothing for me. I've tried Ketoral, Voltaren injections, and Tramal in every form imaginable, but nothing is working. Has anyone here dealt with something similar? Can anyone recommend a medication that actually helps manage this kind of pain? My doctors just seem to shrug their shoulders when I bring it up, and I'm feeling pretty lost. Since the cancer is located on my left side, radiation and surgery aren't even options right now for me.

urbandriver45 said:I need urgent help. I have bronchus cancer and have been undergoing treatment for 6 months without success—chemotherapy hasn't worked for me, so they prescribed Tarceva. I've been taking it for 12 days now, dealing with vomiting, rashes, and I won't even list the rest, but what's really killing me is the pain. It's this constant ache that just won't quit, or sometimes it hits in waves for a few hours. Even Voltaren suppositories don't touch it, and I'm using 75mg Durogesic patches which seem completely useless for me. I've tried Ketoral, Voltaren injections, Tramal in every form imaginable, and nothing works. Has anyone dealt with something similar or can recommend a medication to manage this pain? My doctors just shrug their shoulders at me. Please, I need advice. Since the cancer is on the left side, radiation and surgery aren't options right now.

Ask your doctor about Gabapentin (Neurontin). It's used for treating neuropathic pain (among other things, but that's beside the point right now).

My husband went through some brutal pain and ended up combining Gabapentin 3x1 with a 100mg Durogesic patch.
The pills cost about $50. You can only get them via prescription if a neurologist recommends them.

If a pulmonologist or oncologist prescribes it, you'll likely have to pay out of pocket. For my husband, they worked significantly better than Tramal (which he was taking alongside the patch previously).

The most critical thing when managing pain is consistency—you have to take the tablets continuously. And always keep a stronger analgesic on hand for those sharp, stabbing pains that break through.

Of course—please run all of this by your physician first. It might also be worth reaching out to a Pain Management Clinic (I assume there's one located at the Mayo Clinic).

urbandriver45 said:I need urgent help. I have bronchus cancer and I've been fighting this for 6 months with nothing to show for it—chemo just didn't cut it for me, so they switched me over to Tarceva. I've been on it for 12 days now and it’s just constant vomiting, rashes, you name it... but the thing that's actually killing me is the pain. It's this relentless, non-stop ache, or sometimes it hits in waves for a few hours, and even Voltaren suppositories aren't touching it, especially since the 75mg Durogesic patches I'm using don't seem to do a damn thing. I've tried Ketonal, Voltaren injections, Tramal in every form imaginable, and absolutely nothing works. Has anyone dealt with something similar or can recommend anything to take the edge off? My doctors are basically just shrugging their shoulders at me... please, I need some advice. Since the cancer is on the left side, radiation and surgery aren't even an option right now.

My dad’s been on Tarceva for two months now, and don't even get me started on the side effects. Honestly, the rash is actually a good sign, a positive reaction... but when it comes to the pain, he uses Zaldiar tablets combined with fentanyl patches. So far, that’s the only thing that actually provides any relief, though you have to stay on top of changing those patches every three days like clockwork. Everything requires a prescription and a specialist's sign-off, obviously. Whatever you do, stay away from Lumidol; it messes with your breathing, which is already a struggle enough...
Just hang in there, sending nothing but good vibes your way 👍

urbandriver45 - don't you dare give up the fight! I'm really holding out hope that things turn around soon and that this whole mess is just some temporary phase... just a rough patch...
I'm pretty sure the Mayo Clinic has a dedicated Pain Management Clinic on-site, and if I recall correctly, they should have something similar over at Mount Sinai Hospital too.
👍

Thanks so much to everyone for all the support and cooperation; I'm planning to give both types of tablets a shot once I've had my follow-up consultation with my doctor, and I'm really holding onto the hope that this is just the starting phase of the process.

Hey everyone!

In case anyone is looking, I have quite a few beta 1,3D glucan tablets (500mg) available at a much better price—I've only used about 5 of them!
Shoot me a private message if you're interested.

Also, I have a bunch of my mother's leftover medications in a bag. I'll list everything here once I find a spare moment. I'm happy to pass them all along for free if they can help someone out...

Melissa Parker37 said:My dad's been on Tarceva for 2 months now—not to mention the side effects. The rash is actually a positive reaction, which is a good sign. As for the pain, he’s using Zaldiar tablets plus fentanyl patches. So far, that's the only thing providing relief, though the patches have to be swapped out every 3 days. Everything requires a prescription and specialist approval. Whatever you do, don't touch Lumidol; it messes with breathing, which is already a struggle.
Stay strong—sending positive vibes your way. 👍

Could you please tell me where you bought it? How many pieces are in a pack, how long does it last, and what's the daily dosage?

After 9 rounds of chemo, my mother's heart enlarged—she had pre-existing heart issues—and the chemo weakened her so much they had to stop treatment entirely.
Now she's on IV heart medication, waiting for the medical board to decide if they can continue the chemo.
The cancer hasn't spread further, but an imaging scan showed three tiny metastases (less than 1 cm—I have no clue what "small metastasis" actually means in doctor-speak 🤷) — two in the cerebrum and one in the cerebellum.
They said it depends on which part of the brain is hit, but since she's struggling with balance (the balance center is in the cerebellum), they think the memory center in the cerebrum might be affected too.

So, I need to know everything about Tarceva—if it isn't too much trouble, please let me know.

Thanks.

Susan Diaz91 said:Please, could you let me know where you bought that? How many pieces are in a pack, how many days does it last, and what’s the daily dosage?

My mother just finished 9 rounds of chemo—and she’s already dealing with heart issues—and her heart actually started enlarging because of the treatment, so they had to halt everything.
Right now, she’s on IV drips for her heart, waiting for the medical board to decide if they can even continue with the treatment.
The cancer hasn't spread further, but an MRI picked up three tiny metastases (less than 1 cm—I have no clue what "tiny" means in doctor-speak 🤷)—two in the cerebrum and one in the cerebellum.
They mentioned it depends on which part of the brain is hit, but since she’s lost her balance (and the balance center is in the cerebellum), she keeps getting disoriented, so they think the memory center in the cerebrum might be involved too.

So, I'm looking for every bit of info on Tarceva—if it isn't too much trouble, please let me know.

Thanks.

The balance center is actually in the inner ear... the tumor causes edema, which builds up pressure in the head. That’s why you get those neurological glitches, like losing your balance, messing with short-term memory, or losing your sense of time.

Hello everyone.
My little cousin, who’s been fighting this for 17 months, had a massive fever before ending up in the hospital. He was drooling constantly, coughing, and broke out in a rash all over his body and throat. At night, he couldn't settle—just tossing and turning in bed. By tomorrow, he won't even be able to stand on his feet, only on his knees. He’s currently being treated with intravenous antibiotics three times a day for four days.
All his vital organ tests came back normal. He’s responding to the antibiotics; he’s cheerful, eating, sleeping, reaching out with his hands, pulling his legs toward him, and wiggling his feet and toes. Still, he just can't support himself on his legs yet.
His sedimentacija was 76.

Hey Susan Diaz91...
Tarceva is indicated for treating patients with locally advanced or metastatic non-small cell lung cancer after they've failed to respond to at least one chemotherapy protocol.
I'm quoting "The Wall Street Journal" from March 5, 2009: "The financial burden of treatment will be split between the government and Medicare, such that Roche would pay for—or donate—50 percent of the medication to every patient during the first two months. After those two months, an initial clinical check is performed to see if the patient responds to the drug. Patients for whom Tarceva shows a positive effect will continue to be eligible for free treatment with Tarceva, while the cost remains shared between the state and the manufacturer."

As for my dad, he’s getting the meds through Medicare. He got his first month's supply right there in the hospital (that's 30/150mg per box), then had a follow-up at the hospital before getting another month's worth of therapy. After the second month, we hit another check-up, but this time we had to sit around waiting for Medicare to sign off on everything because those "official" two months were up—the period where they confirm whether Tarceva actually works for him. We usually wait about seven days for a response from Medicare, and during that gap, Dad wasn't taking the Tarceva, which is when we noticed his condition starting to slide... Now he's back on it and doing okay for the moment. How much longer he gets it, or what determines that... I honestly don't know.

From what I gather, Medicare covers Tarceva for about 60 patients a year, though maybe 400 people qualify for the treatment, and in the US, around 3,500 people are diagnosed with lung cancer every year.

Harold Ramos67 said:I was hoping if anyone knew anything about this, they could get back to me.
The main thing we're looking for is info on how to access this medication as quickly as possible.

Here’s the published study: http://www.slu.edu/readstory/more/2171

Since this came out way back in 2003 and nothing groundbreaking or sensational has surfaced since then, you have to assume the study didn't yield results any better than what's already being offered as the standard protocol drug.

edit: here are the results http://jco.ascopubs.org/cgi/content/abstract/24/22/3644

Out of 17 people, only 2 saw tumor regression and stayed clear for the next 30 months... unfortunately, it's nothing better than what you currently get from Temodal.