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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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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: 50
Views: 14463

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...
by nynessie
Fri May 10, 2019 7:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

teresajj1 wrote:Has anyone mentioned or suggested cytoreductive surgery as an option yet?


Yes. However, I am not considered a good candidate. At least, not at this time.
by nynessie
Mon Apr 08, 2019 6:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

Saw my ONC-PA today. The ONC has left and rumor has it there might be someone who is STAYING coming in. I hope so. PA answered all my questions (he is great) and then asked why the scan wasn't scheduled (supposed to be last week). I told him, and he immediately said I was to have the scan, and that ...
by nynessie
Sat Apr 06, 2019 8:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

Update: Not sure I mentioned it already. Avastin was removed from my treatment. My current ONC said she didn't want me taking it as I take a daily coagulant. She then said she'd like to "keep it inter back pocket" for the future. Huh. Another CT/Scan was to be this week. My current ONC tol...
by nynessie
Tue Jan 08, 2019 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

Yesterday was another CT-scan. I will meet with the doctor Monday. This will be my 3rd Oncologist at this hospital in 6 months. I also have a "2nd opinion" ONC at another larger hospital who will also receive the image. Here's hoping this scan is better than the last one. It's going to be ...
by nynessie
Sun Dec 02, 2018 9:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

I re-read these posts when I need a little more encouragement. Thank you all. This week was FOLFIRI+Avastin #4 and I made it through quite well. I've insisted on changing some of the non-chemo meds so I am not downing pills, or wide awake all night. This has been a life-saver for me. I'm able to sle...
by nynessie
Tue Oct 23, 2018 7:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14463

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

I thank you all for your support. I'm still glad I asked for the answers, the information, about my diagnosis, and more importantly about my level of care as doctors have decided. It gives me the control I needed, and I can now "fight back" if needed, especially when they tell me things li...

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