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by boxhill
Fri Apr 19, 2019 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Berberine
Replies: 10
Views: 542

Re: Berberine

Assuming that Vitacost was not the company in question, that's good news. Not for your sister, alas.
by boxhill
Wed Apr 17, 2019 8:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Berberine
Replies: 10
Views: 542

Re: Berberine

I started looking into berberine after it was mentioned here, since it may have a positive effect on a couple of crucial things for me--blood sugar and lipid control--but so far what I've seen has indicated that it is safe for up to 4 months at the recommended dosages. Any information about taking i...
by boxhill
Wed Apr 17, 2019 8:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dexamethasone
Replies: 12
Views: 406

Re: Dexamethasone

I know that I received a steroid as a premed with folfox. I can't recall the precise name, but it was called "dexie." I discussed the possibility of discontinuing it with my oncologist, since it destroyed my blood sugar control, but he said the major purpose was to avoid infusion reaction ...
by boxhill
Sat Apr 13, 2019 10:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: O/T - my furbaby has cancer....hard last weekend - UPDATED
Replies: 18
Views: 603

Re: O/T - my furbaby has cancer....hard last weekend

I understand completely, and I'm sorry for your loss.
by boxhill
Fri Apr 12, 2019 10:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possibly still NED...our story to date
Replies: 115
Views: 10099

Re: Possibly still NED...our story to date

To your original question about disconnecting and flushing the 5FU pump, for FOLFOX typically the pump is on for 46 hours, not 48. The total infusion time is indeed 48, but the first two hours are the Oxy and Leucovrin infusion at the center, followed by the 5FU bolus. When I was on FOLFOX they alwa...
by boxhill
Fri Apr 12, 2019 10:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 20
Views: 1048

Re: Stage 4 hope to share

5FU plus Avastin with no Oxaliplatin?
by boxhill
Sat Apr 06, 2019 3:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My husband has passed
Replies: 20
Views: 1159

Re: My husband has passed

I'm so sorry for your loss.
by boxhill
Sat Apr 06, 2019 3:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 104
Views: 21570

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Not to rain on everyone's parade--I'm pinning my hopes on Keytruda too--I just read that 12 % of patients on Keytruda with a variety of cancers *seem* to experience hyperactivity of the cancer shortly after starting the regimen. And apparently they were not talking about false progression. The artic...
by boxhill
Sat Mar 30, 2019 3:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tests for evaluating chemo between scans?
Replies: 15
Views: 707

Re: Tests for evaluating chemo between scans?

Love it, LPL! No, KRAS has nothing to do with suitability for immunotherapy as far as I know. Except, I guess that it might add to the TMB. If you have a high TMB for an MSS person--I think around 12--you might be able to get immunotherapy. It is true that some people are able to go back on old chem...
by boxhill
Sat Mar 30, 2019 10:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain and tingling of my left leg
Replies: 4
Views: 404

Re: Pain and tingling of my left leg

Keytruda is great! No side effects so far, except perhaps a little fatigue, but not the hammer-like blows of chemo fatigue. I'm going to have a followup MRI of the liver area in May, and we'll see whether it is working. I hope it works for you...I gather that since you are MSS you are one of the hig...
by boxhill
Sat Mar 30, 2019 10:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tests for evaluating chemo between scans?
Replies: 15
Views: 707

Re: Tests for evaluating chemo between scans?

Hi Zephyr, Your sig doesn't say anything about your tumor genetics. Are you MSS or MSI? I rechecked and saw that you are KRAS mutated. sorry. I don't have anything to offer about testing between scans, although I do sympathize: CEA isn't a marker for me, either, so the question of whether FOLFOX was...
by boxhill
Sat Mar 30, 2019 10:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: It’s today (with update) Take down scheduled
Replies: 8
Views: 436

Re: It’s today (with update) Take down scheduled

Don't despair on the ultimate fix yet. I have a very good friend who had a really dreadful case of diverticulitis, was in the ICU on a respirator for weeks, septic, multiple surgeries, came very, very close to dying. Was ultimately released from the hospital with an ostomy. After several months, tha...
by boxhill
Tue Mar 26, 2019 9:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The nagging feeling...
Replies: 9
Views: 688

Re: The nagging feeling...

It's funny, reading this thread I realized that the one question I've n ever asked my doctors is "how long do I have to live." And I've asked a lot of questions. :) In mid January, I started have a neurological problem that as far as anyone can tell is not related to CRC or Keytruda. Why e...
by boxhill
Sat Mar 23, 2019 6:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting immunotherapy next week
Replies: 33
Views: 2442

Re: Starting immunotherapy next week

No, we didn't discuss that specifically. It is my understanding that the 2-drug combo might have a slight advantage in response rate, like 53% vs 52% or thereabouts. I suppose I could move on to that if keytruda doesn't work. Something to ask about. I figure it would likely depend on toxicity, but t...

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