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by boxhill
Tue May 21, 2019 1:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 6
Views: 280

Re: My hair is falling out.

I think I lost about 50% of my hair on Folfox, but it was even all over so I didn't have bald patches, thank doG. I found that when it really came out was the post pump shower. Depressing! I am a longer hair person, and no way could I do a pixie, and my head is too big for most hats, so I just went ...
by boxhill
Sun May 19, 2019 12:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV 8 year cancerversary today AND clean scan
Replies: 10
Views: 566

Re: Stage IV 8 year cancerversary today AND clean scan

Fabulous news! Hope many of us, including me, can live up to her example. :D
by boxhill
Sun May 19, 2019 12:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible lymph node metastasis
Replies: 12
Views: 676

Re: Possible lymph node metastasis

Boys0406, I'm with you. :D I feel your frustration. Unfortunately, I don't know how much you can do about it when you are not the patient and the patient is resistant. One thing you could do, if your H agrees, is set up the patient portal at his cacner center and have him allow YOU to access his rep...
by boxhill
Fri May 17, 2019 3:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 131
Views: 27660

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

tbtsnow, is there any chance they would show up on an MRI?

boswind, sorry to hear that. Is your onc sure that 3 months is long enough to tell?
by boxhill
Wed May 15, 2019 4:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scared with Questions
Replies: 8
Views: 919

Re: Scared with Questions

Congratulations!
by boxhill
Wed May 15, 2019 4:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible lymph node metastasis
Replies: 12
Views: 676

Re: Possible lymph node metastasis

My oncologist told me he now routinely orders genetic testing for all stage 3 and beyond patients. It should be standard of care at this point. Did they at least test for dMMR/MSI, BRAF, and KRAS?

I am not impressed with your oncologist and his or her lack of diligence in answering your questions.
by boxhill
Wed May 15, 2019 4:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 131
Views: 27660

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

May I ask how your disease can be considered "not measurable" if you have peri mets that show on a CT scan?
by boxhill
Wed May 15, 2019 4:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New here - rectal cancer, very nervous about radiation
Replies: 21
Views: 706

Re: New here - rectal cancer, very nervous about radiation

I have colon, not rectal, cancer, but if I were a sexually active young woman of your age with stage 2 I would think long and hard before consenting to radiation. Frankly, I also wouldn't pay much attention to the experiences of male patients, who are trying to be helpful but simpy don't have the bo...
by boxhill
Sat May 11, 2019 2:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recurrence - The Longest Month
Replies: 10
Views: 755

Re: Recurrence - The Longest Month

So sorry to hear this news. It must be very challenging to deal with.

Warrior Spouse, FOLFOX, which the OP has had, includes Oxaliplatin. But yes, hopefully there are other alternatives.

OP, do you know your tumor genetics?
by boxhill
Tue May 07, 2019 12:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Frequent Bowel Movements 3 to 4 Days After 5-FU Leucouvorin Disconnect
Replies: 5
Views: 382

Re: Frequent Bowel Movements 3 to 4 Days After 5-FU Leucouvorin Disconnect

Lots of us have ongoing diarrhea. During folfox and afterwards. Since part of the function of the colon is to remove liquid from the stool, having less of it left means watery stools for many. I don't understand the rationale of not removing the second tumor, but then I'm not a doctor. Where is the ...
by boxhill
Fri Apr 19, 2019 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Berberine
Replies: 13
Views: 1143

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: 13
Views: 1143

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: 23
Views: 1360

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 ...

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