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by boxhill
Fri Feb 15, 2019 10:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy Soon, Am I Overreacting?
Replies: 6
Views: 352

Re: Colonoscopy Soon, Am I Overreacting?

What you've described sounds like an excellent reason to have a colonoscopy. You definitely need to find out what's going on, no matter what it is, and get it dealt with.

I don't think you are overreacting at all. Good luck! :)
by boxhill
Fri Feb 15, 2019 10:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible Third Diagnoses
Replies: 12
Views: 691

Re: Possible Third Diagnoses

It can get frustrating, can't it? I have been like the poster child for staying positive. Yet when people congratulated me on a clear CT scan after finishing chemo, if I responded by saying "Thanks, but I'm going to have a liver MRI in December and that should tell us whether anything is really...
by boxhill
Fri Feb 15, 2019 10:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: "Dr" Google can be good
Replies: 13
Views: 647

Re: "Dr" Google can be good

Lee, in all of the time I've spent googling and reading about CRC I have never come across a site advocating fasting, peach pits, or whatever the latest nonsense is. But then I'm not the type of person who googles "homeopathic cancer cures" or "curing cancer naturally" or whateve...
by boxhill
Fri Feb 15, 2019 9:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: "Dr" Google can be good
Replies: 13
Views: 647

"Dr" Google can be good

I've noticed a constant refrain here advising the newly diagnosed to stay off Google, claiming that the information is often out of date and wrong. Well, yes, sometimes it is. But often it is not. A well-informed patient is an empowered patient, and moreover when doctors realize that you have educat...
by boxhill
Fri Feb 15, 2019 7:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Another NED question: PUMP v. NO PUMP?
Replies: 32
Views: 1118

Re: Another NED question: PUMP v. NO PUMP?

I think you should look into Colontown also, where there are subgroups dedicated to Stage 4, liver issues, the HAI pump, trials for MSS or MSI-H, and more. It is a very supportive and well-informed group.
by boxhill
Fri Feb 15, 2019 7:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 14
Views: 698

Re: Adjuvant immunotherapy

Stewsbetty, I'm in the USA. $11K was the price negotiated by my insurer at the time of my first infusion, Cigna. Otherwise it would be something like $15K. I don't know what my current insurer, Anthem, pays for it. We hit the deductible for me so quickly this year--my H, who does that stuff, lowered...
by boxhill
Tue Feb 12, 2019 8:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfox protocols
Replies: 9
Views: 547

Re: Folfox protocols

I took B complex 100 caps, L-glutamine, and R-Alpha Lipoic Acid during Folfox. I started developing a little neuropathy in my fingertips at Cycle #10, IIRC. Oxy was already cut back in an effort to keep my platelets up, I cut it out entirely for my lat infusion. As is common, it worsened after chemo...
by boxhill
Tue Feb 12, 2019 7:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New member here - CT scan has me worried
Replies: 6
Views: 444

Re: New member here - CT scan has me worried

Well, my cancer was detected by a CT at the hospital. They were looking for appendicitis, they found a blockage and colon cancer, as well as suspicious nodes. On the other hand, I was stage IV. The CT did not see my tiny liver met, though. The surgeon found that. I think a colonoscopy is a good idea...
by boxhill
Tue Feb 12, 2019 5:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 14
Views: 698

Re: Adjuvant immunotherapy

My oncologist said we'd do an MRI in/after the fourth month. At least I think that's what he said, month, not cycle. that would be around the 7th cycle. Because my nodes and liver met didn't show up on a CT scan, we'll go straight to MRI. I've read various things about how long it takes keytruda to ...
by boxhill
Mon Feb 11, 2019 6:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 14
Views: 698

Re: Adjuvant immunotherapy

I was MSI-H with no known masses after surgery as of last spring, so I had to do FOLFOX as first-line adjuvant therapy. I finished FOLFOX in November, and my scans in July and November showed nothing. CEA is not a marker for me. My oncologist and I were uneasy with this, since I had originally had a...
by boxhill
Mon Nov 26, 2018 10:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sad news
Replies: 17
Views: 2087

Re: Sad news

I'm so sorry for your loss. I hope that the fact that you were able to be with him and care for him helps bring you peace.
by boxhill
Mon Nov 26, 2018 10:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSI-H with liver met, in search of help
Replies: 19
Views: 2336

Re: MSI-H with liver met, in search of help

Trevor, I just saw this thread. I also live in Maine, but in the Portland area, so my hospital is Maine Med. My surgeon was Juan Palma Vargas, and he did a great job, especially from my POV in finding a tiny liver met by feel and removing it. It didn't show in the ER CT scan, and things might be qui...
by boxhill
Mon Nov 26, 2018 9:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tropical travel after FOLFOX?
Replies: 8
Views: 708

Re: Tropical travel after FOLFOX?

I had the flu vaccine in October during FOLFOX. They actually gave it to me at the cancer center. As long as it is the KILLED virus, it's fine. I'd go ahead and get it, if I were you. :) My NP said that any vaccination with a killed virus should be okay, but I can't speak to what you need for Costa ...
by boxhill
Thu Oct 25, 2018 12:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Time from dx to first treatment?
Replies: 23
Views: 1701

Re: Time from dx to first treatment?

Went to ER with what turned out to be blockage on March 17th, surgery that night, port installed April 12th, chemo started May 4th. There was a slight delay because of the difficulty of scheduling 2nd opinion at Dana Farber suggested by my onc.
by boxhill
Thu Oct 25, 2018 12:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Post surgical changes. Reoccurrence?
Replies: 16
Views: 1263

Re: Post surgical changes. Reoccurrence?

I think it is normal not to do PET scans so soon after surgery, because chances are they would light up with a lot of surgical changes and it would be very difficult to determine what was what. Or so I was told.

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