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by NHMike
Thu Dec 07, 2017 12:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Heterozygous variant c.2593C>T on APC gene
Replies: 2
Views: 946

Re: Heterozygous variant c.2593C>T on APC gene

I also got a report of "two other variant of unknown significance:" in my Genomic Tumor Results" with the comment: "At this time, there is not enough research/evidence into these two additional variants for us to know how they contribute to disease or affect theraph."
by NHMike
Thu Dec 07, 2017 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 467
Views: 33838

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

The belt was really great running, except mine would sometimes pop off the hooks; would have to stop and reattach under the compression wrap. So perhaps tighten the belt up well! I never used the Cavilon spray so can't comment vs. the wipes, but the wipes were pretty easy to use. Glad to hear that ...
by NHMike
Thu Dec 07, 2017 10:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 910

Re: Feeling nervous n very high anxiety

I don't remember a lot of fatigue. But I'm sure I was tired. Felt a little neuropathy a couple days after the second infusion that lasted a couple days. My neuropathy didn't really kick in until about a month after finishing treatment. My bloodwork was generally okay. I did have to go in for hydrat...
by NHMike
Thu Dec 07, 2017 10:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 467
Views: 33838

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

The visit to the Stoma Nurse went well this morning. The original appointment was for 10 days after discharge but it was moved out three weeks due to a conflict or something. I think that I would have been a lot better off if the original appointment date were kept. I think that the rationale would ...
by NHMike
Thu Dec 07, 2017 6:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 467
Views: 33838

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

The CEA lab report showed up on my hospital portal this morning and the really low number was partially due to a different scale used by Dana Farber. Dana Farber's scale for normal is 0 to 2.5 and my local hospital is 0 to 3.8. So my 0.6 DFCI number rescaled to my local hospital is 0.9. So something...
by NHMike
Thu Dec 07, 2017 6:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 30 Years Old - Colonscopy w/ Polyps Found
Replies: 5
Views: 204

Re: 30 Years Old - Colonscopy w/ Polyps Found

I'm impressed that they are doing genomic testing on your tumor biopsy. A lot of doctors don't order this as it can be difficult to get insurance to cover it. The idea is to find out what the gene mutation is in case it's one of the more aggressive mutations. You can see an older list of colorectal ...
by NHMike
Thu Dec 07, 2017 6:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling “NED”
Replies: 10
Views: 355

Re: Feeling “NED”

This is a very mundane post but I figure it may resonate with someone here, either now or in the future. I was diagnosed stage iii with one suspicious node in March. Had a great reaction to preadjuvant chemo (trial with no chemorad) and my pathology report showed a complete response after LAR/TME. ...
by NHMike
Thu Dec 07, 2017 6:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 910

Re: Feeling nervous n very high anxiety

.. . I wonder at which cycle do u get really fatigued or the xeolda pills will make me tired too because I have to take it 14 days straight .. . I don't remember exactly since it was so long ago. What I do remember, though, is that I became exceptionally tired all of a sudden on a Saturday morning ...
by NHMike
Thu Dec 07, 2017 6:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1 month post CHEMO today!
Replies: 18
Views: 563

Re: 1 month post CHEMO today!

I do too. Back when I was considering getting a port I was able to talk to people on here that told me they had gotten one and could still hit the gym. What a great resource this forum is. I could never find that out on my own. I didn't even think about the gym. I've been doing the Cybex machines a...
by NHMike
Thu Dec 07, 2017 6:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: For Stage III's: NED for how long now?
Replies: 691
Views: 144928

Re: For Stage III's: NED for how long now?

Hi all! I was Stage IIIB rectal cancer and am now over 6 years out from surgery in which I had a complete pathological response to the chemoradiation. It has been a fabulous yet at times trying 6 years with reversal, then surgery for a bowel obstruction, then bone marrow biopsy for wonky blood coun...
by NHMike
Wed Dec 06, 2017 8:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 910

Re: Feeling nervous n very high anxiety

I don't remember a lot of fatigue. But I'm sure I was tired. Felt a little neuropathy a couple days after the second infusion that lasted a couple days. My neuropathy didn't really kick in until about a month after finishing treatment. My bloodwork was generally okay. I did have to go in for hydrat...
by NHMike
Wed Dec 06, 2017 8:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 910

Re: Feeling nervous n very high anxiety

Hi everyone , had my first infusion of Oxaliplatin this morning and took my 3 pills of xeloda also this morning will have to take another 3 tonight. I was ok when getting the infusion . I been home since 12pm . Took a nap I think about an hour not sure it’s because my Xanax was making tired . Now g...
by NHMike
Wed Dec 06, 2017 7:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 and Progressing - Advice Appreciated
Replies: 1
Views: 325

Re: Stage 4 and Progressing - Advice Appreciated

The National Cancer Institute TIL trials require either HLA-C*08:02 or HLA-A*11:01 Alleles so I would assume that they would test for these. The known Alleles that present KRAS G12D to the cell surface are listed below. There is a long thread for these trials on this forum. The HLA-C*08:02 allele ha...
by NHMike
Wed Dec 06, 2017 7:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 910

Re: Feeling nervous n very high anxiety

I would wait and see how your body reacts to the infusions before you set a schedule for taking time off. My numbers actually dip to their lowest about 2 weeks after the infusion. On my last cycle, I had to wait 2 extra weeks because they dipped so low. The first week I tried my platelets were at 7...

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