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by John S
Thu Aug 12, 2010 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA not what I wanted to hear
Replies: 10
Views: 1206

Re: CEA not what I wanted to hear

These are still really low numbers. My CEA came back at a whopping 184 and my onc does not know what to make of it. Sounds like you are still in good place. Its hard not to worry, but it gains you nothing. Good luck.
by John S
Wed Aug 11, 2010 9:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ativan dosage??
Replies: 9
Views: 4152

Re: Ativan dosage??

I get even less. At 180 lbs, 3 mgs, up to three times a day. I use it sporadically, as it makes me sleep.
by John S
Sun Aug 08, 2010 4:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oxitoxic?
Replies: 8
Views: 1328

Re: Oxitoxic?

On my second trip down oxi lane. Had neuropathy develop in feet and hands about 4 weeks after stopping week 8 the first time. This summer started up again. Have had 5 more oxis. The cold sensitivity is not as bad as first time around at all, but the tingling and the "feeling asleep" sensat...
by John S
Thu Jul 08, 2010 7:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr says no surgery is possible
Replies: 14
Views: 1865

Re: Dr says no surgery is possible

Gaelen, not to use this post to argue back and forth, but Alan's post was complaining that he was receiving conflicting messages. From his questions, I infer that at most the Dr. is quoting a statistic without any effort to differentiate for this gentleman, who is experiencing few symptoms and (just...
by John S
Thu Jul 08, 2010 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr says no surgery is possible
Replies: 14
Views: 1865

Re: Dr says no surgery is possible

I don't know why Drs. insist on giving mortality predictions. I was given "weeks or months" about a year ago. Then had a great response to chemo. Then had a bunch of setbacks I won't bore you with, except that I am still here, and apppear to have entered a "chronic" phase where I...
by John S
Sat Jul 03, 2010 11:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: irinotecan - any hope for second lin of therapy?
Replies: 7
Views: 1317

Re: irinotecan - any hope for second lin of therapy?

Tried folfiri and ironotecan and erbitux. Both were ineffective. Side effects included low white blood counts and being put in insolation (can't remember the name for it) which onc blamed on irino. Hair fell out. Skin rashes and shedding, although that may be due to erbitux. Back on oxi and avastin ...
by John S
Sat Jul 03, 2010 11:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: This resentment thing
Replies: 34
Views: 4928

Re: This resentment thing

Excellent posts here. I am experiencing some of these problems with my wife, who seemingly gets angry at me for no reason. And transfers her anger at my children (2 teenage step daughters for her) and my mother to me. If they do something to piss her off (it can be very minor) it seems she takes it ...
by John S
Sat Jul 03, 2010 10:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: did anyone see that truck????
Replies: 17
Views: 3224

Re: did anyone see that truck????

Water and exercise. Try climbing steps. When you go down them, you have no choice but to climb back up. Sleep is not bad medicine either. I am 4 days out as we speak, and am probably sleeping at least half the time. As I feel better, I try to do more. In the off week, get out and visit friends, go t...
by John S
Thu Jul 01, 2010 7:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: John603 and Linda?
Replies: 30
Views: 5206

Re: John603 and Linda?

Hospice is not a bad word, nor nearly as final as it seems. They were more than happy to see me improve, and at least postpone their services. They are committed to make sure you are not in pain, and can work wonders. They are wonderful for the family too. You will always know best what to do. My th...
by John S
Thu Jul 01, 2010 7:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Billyrubin and 5fu
Replies: 6
Views: 1010

Re: Billyrubin and 5fu

My cea scores were as low as 4 last fall after a summer on traditional folfox. Went from 70 to 81 recently. I was unaware about the diffferent ways that cea is scored, but 81 is near the all time high when I had the original diagnosis and obviously no treatment yet. If 81 is on a different scale, ho...
by John S
Wed Jun 30, 2010 5:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Billyrubin and 5fu
Replies: 6
Views: 1010

Billyrubin and 5fu

Was disappointed when my cea score rose to 81. Maybe because onc has shut off my 5fu iv infusion because my billyrubin level is 4.6 and he says it needs to be less than 4. He also said that oxi and avastin are the most important chemo, and I probably won't benefit from 5fu becaause I have had it bef...
by John S
Tue Jun 29, 2010 7:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vectibix Rash
Replies: 2
Views: 874

Re: Vectibix Rash

I did not develop rash at first, but then did. Still have skin shedding, my onc says as lasting side effect, although I stopped erbitux back in early May. hoefully, the skin shedding will stop soon. My onc said rash is a sign chemo is working, but not everyone gets rash. The rash I had was without p...
by John S
Mon Jun 28, 2010 6:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New Fun with Neuropathy
Replies: 9
Views: 1198

Re: New Fun with Neuropathy

This is my second trip down folfox lane. First time, I made it to 8 oxi treatments. Needed surgery for a perforated bowel, so chemo was stopped, But I had no neuropathy, just some cold senstivity that usually went away before next treatment. Then about one month after treatment 8, neuropathy came in...
by John S
Fri Jun 25, 2010 6:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Really Bad Scan Results
Replies: 113
Views: 15303

Re: Really Bad Scan Results

The hospice folks were a big help for me. Their approach is very different than the onc. There should be no pain. Period. In my case, when I went on iv dilaudid 24/7 with a pickline and pump, the mere fact that I was not in pain made a huge difference and I actually began to see overall improvement....
by John S
Thu Jun 24, 2010 4:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scar Tissues/Obstruction?
Replies: 4
Views: 1153

Re: Scar Tissues/Obstruction?

Been fighting obstruction aince January. Hopefully you are experiencing problems in large bowel. If so, an ileostomy can cure the obstruction. If in small bowel, where mine is, well that is another story. I would get more than one opinion from a colorectal surgeon as to what is available and reasona...

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