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by nynessie
Thu May 07, 2020 5:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Hello everyone. Hope all is going well for each of you and your family and friends. The three of us here are almost at the end of the 8th week of remote-work and remote-college. We're still smiling at each other. We've settled into a routine, of sorts, that includes all of us in separate spaces all ...
by nynessie
Tue Mar 17, 2020 11:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

I am working from home. Again. I'm finding I want to be at work, and hate c-virus for taking that away from me just as soon as I was able, finally, to get back to things. Also, I didn't;t mind being home when I wasn't able to get out. Now that I *can* get out, being told *not* to go out somehow is m...
by nynessie
Thu Mar 12, 2020 9:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Appointment with local ONC yesterday. He said: Labs look good, scan looks good, see me in June. :) Wondering if I should cancel my appointment with my Boston ONC (at end of March) given the current state of things. It's a plane, train, bus trip. I'm thinking of calling to ask if there is a way to ha...
by nynessie
Mon Feb 24, 2020 7:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Good morning! Yeah, it's Monday.
Bright, blue sky this morning, and not too very cold outside.
Have a great, positive, beautiful day!
by nynessie
Thu Jan 09, 2020 12:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

2020! January no medical tests or appointments scheduled. February only has a port flush scheduled. March is local ONC, labs, scan, and the Boston ONC. 12/02/2019 labs showed CEA 0.6, CA19-9 12, CA125 50. Cause for concern, so the CEA125 was redone 12/19/2019 and came back at 36. :) Last PT was end ...
by nynessie
Wed Dec 18, 2019 11:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

So... GOOD NEWS! I remain chemo-free for now. :D I met with both surgeon and oncologist this week for my 4-month post-op appointment. The scan report shows there are still cancer cells present, but they are not doing anything. Just sitting there. :D No limitations on movement, exercise, or what I ca...
by nynessie
Wed Oct 02, 2019 4:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Reports are coming in from my surgery at MGH... Pathology says all the margins are clean. YAY! Molecular Diagnostics: NO amplification of the HER2 gene. Immunoreactive for MLH1, MSH2, MSH6 and PMS2 - consistent with a microsatellite stable tumor. [MSS] POSITIVE for variant(s) in SMAD4, APC and KRAS....
by nynessie
Sat Sep 07, 2019 7:34 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already. So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at ...
by nynessie
Thu Jul 25, 2019 7:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

AND THIS IS HAPPENING! I found out July 22 I will not begin new treatment plan with Cetuximab. I had 2 biopsies - one with sample from the tumor inside my colon, one with a sample from the mass outside my colon. One is type wild and one is mutated. (Not sure which one is which.) Good news is my last...
by nynessie
Fri Jul 19, 2019 6:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Monday: Appointment with Dr. James Cusack (surgeon) at MassGeneral. He said there was still too much disease for him to be confident in removing all of it. He called in Dr. Jeff Clark (oncologist) to consult. Left with treatment plan to continue with FOLFIRI, adding Cetuxamab. We agreed to ramp up m...
by nynessie
Fri Jul 05, 2019 6:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Looking for simple directions to Yawkey Bldg (Dr. Cusack) at Mass General in Boston -- we will be starting from Manchester, NH. We know to go down 93, but then things look complicated on google. Hubby would like to try public transportation rather than drive in downtown Boston. I want to get there w...
by nynessie
Fri Jul 05, 2019 6:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :) Great news. You will be in best hands with dr. Cusack. If the surgery is moving forward, you might want to ask to see on...
by nynessie
Sun Jun 30, 2019 7:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)
by nynessie
Mon Jun 10, 2019 6:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

Updates: (1) The hospital is hiring a full-time oncologist in July. :) Finally don't have to see a different onc every three months. (2) Saw the latest onc (#4 for me in a year) May 30. Long story short he looks up from papers he is reading, asks if we'd seen a surgeon. No, we say, a little confused...
by nynessie
Fri May 10, 2019 8:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 24862

Re: Need Support - Told today I'm on Palliative Care

https://www.npr.org/sections/health-shots/2019/04/25/717095214/a-good-life-and-a-good-death-what-is-palliative-care I guess, to answer my own question, we would qualify for palliative care. Interesting article. I live in a rural area, and at the time of my diagnosis, no one mentioned palliative car...

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