rapidseal49 said:Just wanted to jump in on this conversation too.....
The agony has been going on for five months now, and it feels like the worst part might be coming...
My cousin, who’s 40, is really sick... here’s what happened.
Back when he was about 14 or 15, he had some kind of colon disease—I think it’s the same thing Dennis Miller dealt with—something involving a perforation or whatever.
After treatment and surgery to remove part of his colon,
he lived a totally normal life, just sticking to his meds and a strict diet (no alcohol, deli meats, prosciutto, spicy food, etc.) because his doctor told him back then (which sounds so terrifying now) that he had a huge risk factor for developing cancer.
Sadly, at the time, nobody—not even him or his family—really took it seriously.
Everything was fine until last December when my cousin started complaining about back pain (!). After days of testing in hospitals across two different cities, they finally found out in Washington, D.C., that he had spinal metastases that were preventing him from walking and causing all this pain.
After two surgeries, having three vertebrae removed (they put in silicone ones instead), and four or five rounds of radiation... they thought they cleared the spinal metastases.
But, they still hadn't found the primary source...
After a PET scan, they found a 1.5 cm mass where the small and large intestines meet, plus two lung metastases (about 1.2 mm).
They decided on chemo. Because his liver is in such bad shape, he could barely handle it; the doctors were worried his body wouldn't hold up.
Basically, he’s currently on his fourth round out of six prescribed, taking liver meds, and now they've added bone medication too.
Apparently, there's a chance the spinal metastases spread while he was doing chemo (he's feeling neck pain now?).
Things are looking really grim, and I’m starting to lose hope....
I have a few questions though:
1. Why didn't they just do surgery to remove the primary site?
2. He still can't walk, and the mental toll on the family is devastating. I'm sure you all know what happens after chemo (the nausea, the diarrhea, the headaches)...
How can I help him?
3. And as if things weren't bad enough, it keeps going:
His mother was just diagnosed with MS, and she’s starting treatment now too.....
Is there any hope?
Hi everyone, sorry if this is a bit all over the place.
Your story really touched me. 24 years... that is just heartbreaking.
It’s wonderful that you’re trying to help, and I can only imagine how heavy things feel for your whole family right now.
There aren't any doctors among us, as far as I know, so it's hard for anyone here
to give you concrete medical advice. It’s true that with Crohn's disease, there’s a massive risk for colon cancer, and I know check-ups are usually pretty frequent because of that, so I don't quite get how it wasn't caught sooner. But, what's done is done, and there's no point dwelling on the past.
If I understood you correctly, the PET scan didn't show liver metastases,
just the 1.5 cm spot in the intestine and the 1.2 mm ones in the lungs, and everything else is just suspicion. If that's the case, to a layperson like me, it doesn't sound quite as hopeless. He's so young, and being immobile like this is so hard... maybe it's worth seeking a second opinion based on his results.
I know this is all so difficult. Just stay by his side as much as he needs, and try to breathe a little optimism and hope into him. Maybe share your plans or intentions with him—when someone is sick, especially when they can't move, it means so much to see that someone is fighting for them and still searching for answers, no matter how tough things get. Just keep helping him as much as you feel able to, as long as he and the family are okay with it.
Hang in there!