Support resources for families dealing with cancer and other serious illnesses

Henry Garcia5 said:Can anyone point me toward a skilled oncological surgeon capable of handling a Hemangiopericytoma? Standard therapies just aren't cutting it. I'm looking for a specialist who can actually perform the surgery, regardless of where they are located. We're talking about a woman born in 1980. She previously underwent a procedure at the Mayo Clinic, but the doctors there couldn't fully remove the tumor due to heavy bleeding during the operation. Now, the recommendation is to find a top-tier surgical oncologist who can tackle this specifically. She’s home right now and feeling fine—no major issues so far. Any leads would be greatly appreciated!

http://www.mayoclinic.org/departments-centers/oncology
http://www.mdanderson.org/research/index.html
I highly recommend Dr. Patel over in Oakland. It's been a while since I've seen him, but honestly, the man works miracles.

Time for an update on my aunt's situation.

A few radiologists were convinced it was cancer and metastases based on her lung CTs and X-rays, but the PET scan and markers came back negative. The Pulmonologist changed his mind on the diagnosis and isn't recommending more testing. She’s relieved and is done with all of this... we're just hoping the Pulmonologist is right.

Thanks again for the advice. Wishing health to everyone here, for yourselves and your loved ones.

Angela Wright said:Highly recommend Dr. Patriarch over in Oakwood—I honestly almost forgot about him for a second there. Seriously though, the guy works miracles.

Thanks so much—I'll let you know if I manage to get anywhere with this. 🙂

Just wanted to let everyone know that after an 18-month battle... which was about 13 months longer than what several doctors predicted... my mom finally found her peace yesterday morning. She’s finally in a place where there is no more pain or suffering. 😢She fought so hard. Honestly, she was incredibly brave—just fighting through everything with so much patience, even with the kind of agonizing pain we can't even begin to imagine... despite being on massive doses of morphine...

But it's over now. It's done. The pain is gone.

Goodbye, Mom... until we meet again down the road. Thank you for everything. ♥

brisklynx62 said:I wanted to let everyone know that after an 18-month battle... which was 13 months longer than what several doctors predicted... my mother finally found her peace yesterday morning. She's in a place where there is no more pain or suffering. 😢 She fought so hard—truly, heroically, and with such incredible patience, despite unimaginable agony... she pushed through the pain even with massive doses of morphine.

But now, it's over. It's done. The pain is gone.

Goodbye, Mom... until we meet again on the other side. Thank you for everything. ♥

Please accept my deepest, most sincere condolences. Hang in there; may she rest in peace.

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 am so sorry for your loss. My condolences.

Dad’s still coughing like crazy even after his seventh round of chemo, and now he won't touch food at all. This last session was with oral tablets, Hyamin, and if I’m being honest—though I'm no expert—it feels like that treatment actually made the cough worse instead of helping it.
That cough is just brutal; it’s completely draining him. Like I mentioned before, Codeine doesn't seem to do a thing. Neither does Api Syrup, Panatus, or even the old black radish and honey trick... nothing works.
Does anyone have any actual advice? His doctor says there isn't much they can do because it's just part of the illness. I just find it hard to believe there isn't something, anything, that could at least take the edge off that cough!

Nancy Lee said:Dad is still coughing even after his seventh round of chemo, and now he’s lost his appetite entirely. This last round was oral medication—Hyamin—and if I'm judging by how much worse the cough has gotten since then, it feels like it didn't do a single thing to help.
That cough is brutal; it just drains him completely. Like I mentioned before, Codeine isn't doing squat. Neither is Api Syrup, Panatus, or even black radish with honey... nothing works.
Does anyone have any advice? The doctor claims there's nothing they can do because it's caused by the disease itself. I just refuse to believe that we can't at least take the edge off this cough!

Man, 😢
Go ask the doctor if maybe Norvasc could help calm things down, since it has a relaxing effect. Either way, I suspect he's going to need actual antitussics—medications specifically designed to block those cough receptors—likely at higher doses. Besides Codeine, you're looking at morphine, ethylmorphine, dihydrocodeine, hydrocodone, dextromethorphan, folkodine, noscapine, or glucine. Those are all opioid-based antitussics, though there are non-opioid options too, like butamirate, pentoxiverine, or pipazetate. You really need to sit down with the doctor and hash it out.

Angela Wright said:Man, 😢
Maybe check in with his doctor. Maybe they could lower the dosage of Normabel, since it has that relaxing effect. Either way, I guess he might need some kind of medication that blocks those cough receptors, if that’s even a thing. You'll probably have to talk it over with the doc.

Well, his doctor is basically saying there's nothing to be done—that the cough is just part of the primary illness and that's that. I don't know, I still feel like there has to be something we can do, but I'm running out of people to ask.
By the way, I've seen a lot of mentions of Dr. Shantek here. Even though I doubt he'll have anything new to tell me, does anyone happen to have his email or phone number? Like, does he actually deal with people who aren't his patients via email, or can you just drop by for a second opinion?

Angela Wright said:Oh boy. 😢
Maybe check in with the doctor about whether Normabel might dial down the irritation, since it does have that relaxing effect. Either way, I suspect he’s going to need some kind of antitussive therapy—basically drugs that block those cough receptors. If we're talking stronger doses, you've got everything from Codeine and morphine to ethylmorphine, dihydrocodeine, hydrocodone, dextromethorphan, pholcodine, noscapine, and glucine. Those are all opioid antitussives. Then there are the non-opioid options like butamirate, pentoxiverine, or pipazetate. You really should just run it by his doctor.

I don't get why she's being so stubborn about there being other options besides Codeine. Maybe it just isn't cutting it for him, and he actually needs something else entirely. But she just keeps insisting that Codeine is the gold standard for coughs—as if, if that doesn't work, he's just out of luck.

brisklynx62 said:Just wanted to let everyone know that after 18 months of fighting... which was 13 months longer than what several doctors originally predicted... my mother finally found peace yesterday morning. She's in a place where there's no more pain or suffering. 😢 She fought so hard, truly brave, almost martyr-like, yet incredibly patient despite the unimaginable agony she endured... pains we can't even wrap our heads around... all while dealing with massive doses of morphine.

But now, it's over. It's done. The pain is gone.

Goodbye, Mom... until we meet again on the other side. Thank you for everything. ♥

I'm so sorry for your loss. 😢

Nancy Lee said:I don't get why she refuses to admit there’s more out there than just Codeine. Maybe it's just that Codeine isn't cutting it for him, and he needs something else entirely. Instead, she just keeps harping on about how Codeine is the gold standard for coughs—as if nothing else in the world could possibly work if that fails.

Hold on, is this guy an oncologist or just a general practitioner?

His doctor from Jordan, a pulmonologist. Anyway, my dad ended up in the ER this afternoon because he was feeling pretty rough—dizzy, couldn't even stay upright because his legs were shaking so much. Long story short, his blood work looks bad. The ER doc thinks it might be a side effect from that last round of chemo. They’ve kept him at the hospital on an IV for now.

a I 😢 really hope they actually step up and do something about this now. You should probably head over to Cepulic's office and get a second opinion. It might cost you a bit, but at least you'll finally have some clarity on whether that cough can actually be treated or if you're just wasting your time.

brisklynx62 said:Just wanted to let everyone know that after an 18-month battle... 13 months longer than any of the doctors predicted... my mother finally found peace in the early hours of yesterday morning... a place free from all pain and suffering.. 😢 She fought so hard, truly brave and selfless, showing incredible patience despite the unimaginable agony she endured.. pains that continued even through 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'm so sorry. 😢

Angela Wright said:Oh boy. 😢 I really hope they finally step up and do something about this. Maybe you should try heading over to see Cepulic to get a second opinion. It’ll cost you, I know, but at least then you'll actually know if there's anything that can be done about that cough.

I’m just so incredibly frustrated...🙂 So, they gave my dad an IV last night and then basically kicked him out because the hospital was supposedly at capacity. His white cell count is sitting at 2.2 and his platelets are down to 87. Is that actually dangerous? The doctors said those were the worst parts of his bloodwork and everything else was relatively fine, I guess. I called Jordan, and they told me he really should have stayed put, but the hospital staff just keeps insisting there’s no room. Now they want him coming in every single day for blood draws and they'll give him more fluids if needed. For his cough, they just gave him some Panatus Forte and acted like that was the end of it—like there’s no point in messing around with heavy-duty antitussives right now. How does that even make sense? I honestly don't get them. They won't keep him in a bed, he's coughing his lungs out, and their big solution is Panatus? That stuff barely works for my kid when she has a common cold, let alone for him. I feel like I'm losing my mind. I'm not even in the same city, but if I were, I'd make sure they heard me coming.
What should I even do? Honestly, I haven't got a clue.

Nancy Lee said:I am absolutely livid...🙂 So, they gave my dad an IV last night and then just sent him home because the hospital was supposedly "full." His white cell count is at 2.2 and his platelets are 87. Is that dangerously low? They told us those were the worst parts of his blood work, and everything else was relatively fine. I called Jordan, and they said he definitely should have stayed in the hospital, but the staff here is insisting there’s no room. Now they want him coming in every single day for blood draws and will give him another IV if needed. For his cough, they just gave him Panatus forte and claimed it's enough—that there's no point messing around with antitussives right now. How can they say that?! I honestly don't get them. Not only did they kick him out of the hospital, but the man is coughing his lungs out, and their solution is Panatus?! That stuff doesn't even touch a common cold for my little girl, let alone for him. I'm losing my mind. I don't live in the same city, but if I did, they would have heard me screaming from across town.
What should I do? I'm completely lost.

Look, if I were in your shoes, I would take my dad straight back to Jordan and make a scene. He is their patient, and it is their job to stabilize him. If they admit he should have been kept in the hospital, then demand specific, medical reasons why other options aren't suitable for that cough (use those specific medications I mentioned earlier). Make them provide a definitive reason for every single one they refuse.
I wish I could be more helpful, but I'm just not an expert when it comes to lung issues. Maybe try reaching out to Sandra to see if she has any advice.

Angela Wright said:Look, if I were you, I’d head down to Jordan with my dad and start making some noise. He’s their patient, right? They need to stabilize him. If they really think he needs to stay put, they should give me concrete reasons why anything else wouldn't work for that cough—you know, those specific meds I mentioned. I want a real reason for every single one they turn down.
I wish I could be more helpful, but I don't know enough about lung issues to weigh in. Maybe try talking to Sandra and see what she thinks.

Oh, right. Sandra. It didn't occur to me to ask her amidst all this chaos. The issue is that Dad isn't in New York City; he's in San Diego. Everything I just described happened at the hospital in NYC, and there's no way he's able to make the trip out here right now, which is why I'm panicking. The people over there seem completely incompetent.
I'll reach out to Sandra. She'll probably have some actual sense to offer.

I’ve had to bury two people in just the last month... 😢
Now it's my turn to step up to the plate. Honestly, a tumor and thyroid surgery shouldn't be such a massive ordeal—not really.
However... as part of the pre-op routine, I went in for a chest X-ray
and it turns out I have what they called "a small amount of fresh pleural effusion."
I'm heading in tomorrow for bloodwork, and then I see a pulmonologist next week.

I'm at a loss for how to process this. I'm angry—just plain angry—because I really don't need this right now... and there's the nagging fear it might delay the surgery entirely.
And if I'm being honest—maybe I'm just being a pessimist, or perhaps I'm just poorly informed—but I can't shake this feeling in my gut that this fluid in my lungs is related to the thyroid tumor... you know exactly what I mean.
I don't recall having any recent infections, nor any injuries to my chest that would explain this.
What should I even do? Should I start taking some kind of immune booster just to be safe?

If it is what I think it is, I don't know... I just don't know. I'm scared, I'm frustrated, and I'm completely overwhelmed.
And why? Why does it have to be this way? Isn't everything I'm dealing with already enough? Why does it always have to get more complicated?
I apologize... it's just been difficult finding anyone to talk to about this, so I suppose I'm just venting here. (Moderators, please feel free to delete or edit this if it's inappropriate.)

nimblepanther14 said:I've buried two people in the last month... 😢
Now it's my turn... okay, a tumor and thyroid surgery shouldn't be a huge ordeal.
But... as part of the pre-op, I had a chest X-ray done...
And it turns out I have, and I quote, "a small amount of fresh pleural effusion."
Getting bloodwork tomorrow, then seeing a pulmonologist next week...

I don't know what to think... I'm angry because I really don't need this right now... and it might delay the surgery...
Worst of all... maybe I'm just being a pessimist or poorly informed... but I can't shake the feeling that the fluid in my lungs is from the thyroid tumor... you know what I mean...
I don't recall having an infection or any chest injuries that would cause this...
What should I do, start taking some kind of immune booster just in case...?

If it is... I don't know what I'll do... I don't know... I'm scared, I'm mad, I'm confused...
And why... why... isn't what I'm dealing with enough... why does it have to get complicated?
Sorry... it's just been hard to talk to anyone about this... so I'm venting here... (mods, feel free to delete/edit if this is inappropriate)...

Maybe that pleural effusion part was misread, especially since it says "a small amount." Sounds like someone's just guessing at the interpretation. Besides, there are plenty of other reasons that fluid could be there, and most of them aren't scary. In my experience, X-ray readings are wrong more often than they're right.

Not an expert, but thyroid tumors usually don't grow fast, at least not that I know of. I have a friend who was diagnosed very young and had to go under the knife twice because the first surgeons missed something, but she ended up fine in the end.

Seems like you're panicking a bit early, though given everything you've lost lately, I get it. Sorry you're going through this... keeping my fingers crossed for you.