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by ginabeewell
Sat Jul 24, 2021 11:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gall bladder removal and sigmoid resection?
Replies: 4
Views: 298

Re: Gall bladder removal and sigmoid resection?

I had mine removed with my colon resection when they installed an HAI pump (anyone with a pump gets it removed). I honestly couldn’t tell whether digestive issues were the result of that or my colon resection; but either way I didn’t notice much difference after a few weeks time. Incidentally my ste...
by ginabeewell
Sat Jul 24, 2021 8:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 29F. Just got a colonoscopy. They found something and I’m scared.
Replies: 50
Views: 2696

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

I second the long phone charger reco, and I might go even longer! This may be TMI but I found it hard to move quickly enough to get to the bathroom on time, I’m sure it has to do with anesthesia etc. So my reco is to bring plenty of underwear and/or pads. I was also happy I had my own nice cozy sock...
by ginabeewell
Thu Jul 22, 2021 12:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 29F. Just got a colonoscopy. They found something and I’m scared.
Replies: 50
Views: 2696

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Dr Paty did my colon resection, and he had me do a colonoscopy in his office during pre-surgical check in so he could see the mass himself. By that time, my chemo had cleared up everything in the colon! He did the resection anyway, and my recovery was the easiest of my three surgeries by far. I thin...
by ginabeewell
Thu Jul 22, 2021 12:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Grieving my past life and no one understands
Replies: 16
Views: 934

Re: Grieving my past life and no one understands

I do understand how you feel, and I’ve been there myself on multiple occasions. I remember wailing to my therapist that I would never feel safe again!! I’m now three years in. I’ve been to NED three times and had two recurrences. I feel safer and more secure and happy than I did before my diagnosis,...
by ginabeewell
Tue Jun 22, 2021 9:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 383
Views: 100604

Re: My CRC with liver mets journey

Are you able to still stay on schedule with Folfiri? All of mine are delayed at least one week due to low platelets. Also had one case of neutropenia. Not sure if there's anything I can do for the platelets. I took neulasta when I was on FOLFIRI which helped, but I had a tough time tolerating it. S...
by ginabeewell
Tue Jun 22, 2021 6:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 383
Views: 100604

Re: My CRC with liver mets journey

Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently! Ha, I know! I’m above 30 rounds now. Kemeny’s take was that my response to chemo has been so unexpectedly good that she thinks a chance 4 more rounds will wipe it out comple...
by ginabeewell
Fri Jun 18, 2021 11:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 383
Views: 100604

Re: My CRC with liver mets journey

Finally heard from Dr Kemeny’s office: no ablation, continue chemo. My oncologist at NW had a different perspective: 6 week break, labs after 3 weeks, then a scan. Most likely something would recur, and then ablation or resection would be on the table again. After my last recurrence, I think I did 8...
by ginabeewell
Wed Jun 16, 2021 6:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Signatera Test Came out positive
Replies: 16
Views: 2695

Re: Signatera Test Came out positive

I have had two signatera test. My understanding is that a profile of your initial tumor is created from original tissue. Then blood is drawn in present time and it compares it to your original profile. It does not note mutations or changes in genetic profile but only reports out positive or negativ...
by ginabeewell
Tue Jun 15, 2021 11:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 383
Views: 100604

Re: My CRC with liver mets journey

I made the mistake of not posting here and starting other threads about specific issues so a quick recap: Kemeny gave the ok to stop chemo in Dec after 3 consecutive clean scans. Then a questionable scan in March, a trip to Hawaii, and a small met confirmed in April. Dr K talked about one chemo and ...
by ginabeewell
Tue Jun 15, 2021 11:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rising CEA After 2 1/2 Years on Keytruda
Replies: 22
Views: 6745

Re: Rising CEA After 2 1/2 Years on Keytruda

Have been thinking of you! Hope you’re getting good counsel and a better sense of what’s next. Looking forward to your update when you’re ready to share.
by ginabeewell
Sat Jun 12, 2021 3:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recent HAI Pump?
Replies: 12
Views: 1795

Re: Recent HAI Pump?

Oh I had no idea they stopped production! That’s distressing, I’ve read of so many people here benefiting from it. Hopefully someone will come up with a similar technology, it seems like directing chemo straight at the problem would be better than running it through the whole body and hoping it sti...
by ginabeewell
Thu Jun 10, 2021 12:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recent HAI Pump?
Replies: 12
Views: 1795

Re: Recent HAI Pump?

My experience is that the only places you’ll get a positive reaction on the pump are the centers with expertise. And over time I have wondered if Kemenys pump success was as much or more just about her skill as an oncologist. Personally if I wanted to know if the pump was the right option I would tr...
by ginabeewell
Sun Jun 06, 2021 6:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Care at a elite cancer center without traveling to it ?
Replies: 5
Views: 905

Re: Care at a elite cancer center without traveling to it ?

I think that’s possible - it’s what I do - but I do need to travel occasionally. Before Covid it was once a month. Now it’s more like every few. But MSK does work with NW to tell them what to do for the rounds of chemo I do locally. My scans and surgeries are all in NY however.
by ginabeewell
Sat Jun 05, 2021 4:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 Rectal Cancer 45yo Wonderful Woman
Replies: 28
Views: 4582

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

She might have a KRAS mutation, which would eliminate Vectibix and the other EFGR pathway drug...I'm blanking on the name. Since they most likely don't know yet, maybe just trying avastin in the meantime? That could very well be, I feel like that was something one of the first oncs we visited talke...
by ginabeewell
Thu Jun 03, 2021 1:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 Rectal Cancer 45yo Wonderful Woman
Replies: 28
Views: 4582

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

I'm not quite sure how to go about getting a second opinion. I know that MDA and MSK are a couple of the major cancer centers. What should I get a second opinion on? The diagnosis is pretty straightforward. Would the second opinion be on the treatment plan? Do I let our oncologist know our intent t...

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