Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I can't take this up & down anymore with my brother..cripes I can't even imagine how he deals with it:
This is an update I received in March, he is being treated at Cancer Treatment centers... ( my lord..do they lie to get you to keep coming or what)
Posted Mar 16, 2010 1:15pm i know it's been awile since my last post, SORRY. However I now
have news to pass along. The doctor for the first time said
"Clinical Remission" ta-da. he also said if there is any cancer in
me they can't see it. However I will need to finish the radiation
therapy and they changed my chemo to 5FU. The oxoliplatin was
causing nueopathy in my hands and feet so they had to stop it and
switch to 5FU, nasty stuff
Then he was in a car accident...collapsed a lung and local hospital did not like what they saw on cat scan so back to Tulsa he goes and I get this update:
May 4th,2010
Posted 17 hours ago
Well so much for the remission, the cancer is in the lungs and
they can't do anything till he's doing better. He's lost alot of
weight down to 132lbs VERY weak, WON'T eat, and vomiting when he
does. He's on some strong pain meds and is "out of it" most of the
day. His blood pressure is low and his hemoglobin counts are low so
they gave him 2 units of blood. We will leave tomorrow mornning for
home. He will be coming back in 3 weeks.
I'm at my wits end trying to understand what the hell is going on....
He stated with esphogeal (sp?) cancer which they removed completely...
Kate, pretty sure I gave you my email; send me a message, I want to give you a link.
From what I've followed of your brother; it's serious.
I don't care for where he's being treated; no secret there. A message board I go to most people say they are not good.
As far as "remission" - means nothing. It means that there is no active cancer that they detect. There are actually better tests; I know someone that sends blood to Greece because it tests for micro amounts & finds things before our tests do.
Take my hub; right neck mass - gold ball sized; right tonsil plus lymph nodes - nodes had extracapsular activity - which means it's the spreading type which your brother probably has. Hub's was positive for HPV.. Almost positive HPV 16 but I could be wrong.
Surgery to remove what I listed 9/22 plus a feeding tube. Most oral cancer patients get feeding tubes. Chemo (3) and radiation (33) started 11/4 & ended 12/23. PET scan 2/4 - clean. We have never heard the word remission & I'm glad. My dad was supposedly in remission from September until November; and after that, I know remission is BS until they are cancer free for a few years.
Next scan is next month; not sure if they will include lungs. From what I've read, lungs & liver are usually where this type goes.
5FU is supposed to be high powered stuff from what I know from the cancer board I go to.
I wish your brother would consider coming out here. The care at Thomas Jefferson was tops.
I just re-read this, kept nagging me that I may have missed a point. He's being treated at Cancer Center of America in Tulsa? I man from my town is being treated there too. He has pancreatic cancer and cancer in the liver (I'm not sure which was the primary and which is the mets.) He seems to feel he's getting good care there. They have him on chemo and also on a pill made from bindweed. I haven't seen him in a while but I hear he's doing OK. I hope the center is as good as they claim to be.
He is now at Swedish Hospital in Denver as his GP doc sent him there for severe dehydration..liver is out of whack and gall bladder needs to come out but no where near strong enough for surgery..he is delusional..had pretty gorillas in his room last night ~~~~sigh~~~ at least they were pretty
Dehydration and liver being out of whack (may not be filtering the drugs through his body)may be cause for delusions.
CTCA....my sisters doctor just got very quiet at first when she told him about our brother..he then said he equates them to being cult like...not high on his list
From what I've read; they will fly you to their centers; which from other things I've read, gets charged back to insurance. At some point, my hub maxed his insurance out; I can't imagine if he'd gone to a place like that. We'd be forever in debt. I've been working on the doctor bills; so I don't have a balance of how much we will owe yet.
I do agree with complimentary care - vitamin C IV's, supplements; there are places that deal specifically with that. We have a really good place in Cherry Hill.
I did a quick google about complaints and did not find exactly what I'm looking for.
From what I understand, their treatment is not as up to date as other places.
Kate, there's a cancer hospital in Ohio that is supposed to be very good with oral cancers - James Cancer Center.
Do you know if your brother tested positive for HPV?
Tulsa isn't all that far from MD Anderson, which is only about the top rated place in the world. Won't insurance cover for treatment there?
Very best to you (and all of you) regardless.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
