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by heiders33
Sat Dec 15, 2018 11:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 35
Views: 1379

Re: No longer NED - DEVASTATED

Getting my appointment at MSK was exactly as mpbser described. The intake person managed the logistics with paperwork, etc., and after that was done I got my appointments very quickly. The hardest part was communicating with the other non-MSK surgeon (her office staff was terrible!) and getting my r...
by heiders33
Fri Dec 14, 2018 8:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 35
Views: 1379

Re: No longer NED - DEVASTATED

Is it really too soon to do another resection? I guess I don’t know much about liver operations. I would recommend getting a second opinion from one of the liver surgeons at MSK in addition to Dr K.
by heiders33
Fri Dec 14, 2018 7:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Concerned,,,,Elevated CA199
Replies: 8
Views: 895

Re: Concerned,,,,Elevated CA199

Piggybacking on this post, I finally had my CA19-9 tested for the first time. I'm in the middle of chemo so not a great time to start, but I wanted to at least get it started so I could compare what happens after I am off chemo for a while (sometime next summer). Right now it's at 13.
by heiders33
Thu Dec 13, 2018 6:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant Chemo
Replies: 8
Views: 232

Re: Adjuvant Chemo

Don’t be scared of the adjuvant chemo. It’s not a picnic but it is doable. Everyone reacts differently, and a good oncologist will monitor your reaction and side effects closely. There are lots of good meds and methods for monitoring side effects.
by heiders33
Thu Dec 06, 2018 6:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NEW-Need some positivity here.
Replies: 486
Views: 104359

Re: NEW-Need some positivity here.

Congrats, great news!
by heiders33
Sun Dec 02, 2018 5:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pressure in rectum. PLEASE HELP.
Replies: 3
Views: 192

Re: Pressure in rectum. PLEASE HELP.

You may have some form of IBS - have you been diagnosed with this? Try drinking fennel tea to help with passing gas. Try other natural probiotics like yogurt and kefir and kombucha. You don’t have colorectal cancer so don’t panic. It’s slow-growing and wouldn’t form so soon after your colonoscopy. A...
by heiders33
Thu Nov 29, 2018 8:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Fistula Questions
Replies: 7
Views: 285

Re: Fistula Questions

This is good to know about, because I will need to use a pediatric scope or virtual colonoscopy in the future because of the post-radiation/surgery shape of my colon. My colonoscopy in October didn’t go past the recto-sigmoid junction. I will definitely ask about the risks of a fistula in the future...
by heiders33
Sat Nov 24, 2018 9:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Is LARS a foregone conclusion? Anyone doing W&W?
Replies: 24
Views: 857

Re: Is LARS a foregone conclusion? Anyone doing W&W?

I had a LAR, ileostomy, and reversal and do not have LARS at all. I also had radiation. My tumor was somewhere mid-rectum. None of my doctors talked to me about LARS beforehand and I knew nothing going in. After my surgery I read a lot about it. I did pelvic floor exercises before my reversal and ha...
by heiders33
Sun Nov 11, 2018 12:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy prep question
Replies: 10
Views: 514

Re: Colonoscopy prep question

Personally I think you can use whatever works for you. All that matters is that the colon is clean.
by heiders33
Sat Nov 10, 2018 8:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4. Anyone experienced failure of Folfiri but a good response with Folfox / 2nd line?
Replies: 1
Views: 193

Re: Stage 4. Anyone experienced failure of Folfiri but a good response with Folfox / 2nd line?

Hi there, sorry to hear about the progression. I don’t have an answer for you, but when she’s on 5FU she should avoid folic acid. When I did XELOX I took mushroom extract, probiotic, Vitamin D, and also magnesium for cramping. For neuropathy I bought some glass marbles and put them in a bowl with lu...
by heiders33
Sat Nov 10, 2018 8:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV to NED in 9.5 months!
Replies: 12
Views: 701

Re: Stage IV to NED in 9.5 months!

Amazing story! Gives me encouragement as my liver enzymes went up after just one round of FUDR. But I know Dr K is truly a wizard and I trust her. Thanks for sharing and congrats!
by heiders33
Mon Nov 05, 2018 5:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 39
Views: 2309

Re: Hospitals that install HAI pump?

Wow that’s incredible. I wonder how many of them are adopting and servicing the Medtronic pumps.

I deactivated Facebook several years ago but I might have to rejoin just for this group. I wonder if there’s a way I can filter everything else out....
by heiders33
Thu Nov 01, 2018 7:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does the successful result of hydrocortisone suppositories rule out cancer?
Replies: 6
Views: 424

Re: Does the successful result of hydrocortisone suppositories rule out cancer?

I had rectal bleeding and was prescribed hydrocortisone suppositories, but they didn’t stop the bleeding at all. I’m just one case though. Get the colonoscopy if it will give you peace of mind. The risk is very low.
by heiders33
Thu Nov 01, 2018 6:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 39
Views: 2309

Re: Hospitals that install HAI pump?

I will be there on November 7 as well, getting treatment. Maybe I'll see you in the waiting room! Great to hear about Northwestern. I'm still curious to see how other pump programs adopt the Medtronic pump. I'll just have to ask Dr. Kemeny's team about it.
by heiders33
Wed Oct 31, 2018 10:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Upstaged after surgery
Replies: 11
Views: 1163

Re: Upstaged after surgery

Your doctor shouldn’t minimize this. I was always told after surgery to watch for the very symptoms you describe. It could be an infection.

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