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by Spazzyjanet
Tue Dec 04, 2018 9:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....
Replies: 3
Views: 811

Re: How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

I will be going through this soon. I have a Peritoneal MRI and follow-up appointment with the surgeon at OSU Jan 9th. Am hoping to squeeze in a set of scans just before that. I am then heading up to Cleveland to meet with a HIPEC surgeon and liver surgeon on the 10th and 11th to get their take. I ha...
by Spazzyjanet
Mon Nov 26, 2018 10:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sad news
Replies: 17
Views: 2859

Re: Sad news

I am very sorry for your loss :(
by Spazzyjanet
Fri Nov 23, 2018 2:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.
Replies: 31
Views: 11188

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

For those of you who are 7+ years out from a Stage 4 diagnosis. Are any of you NOT receiving treatment from a top 5 cancer hospital?
by Spazzyjanet
Thu Nov 22, 2018 7:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.
Replies: 31
Views: 11188

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

I'm just under three months out from my stage 4 diagnosis and like you am searching for stories of long-term hope. I just get a look of pity and a reality check when I tell them than I am shooting for long-term survival. Yet I see stories of people who are 10-years out or longer from a stage 4 diagn...
by Spazzyjanet
Wed Nov 21, 2018 4:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

Re: HAI pump without Dr. K at MSK

Okay, so I am coming around, but a few questions. 1) How often does the pump need to be filled. I had a doctor at the Cleveland Clinic tell me that it was every 2 weeks, but I thought it was longer than that? 2) I'm going in for an MRI of my Peritoneum in early December to determine if there is curr...
by Spazzyjanet
Sat Nov 17, 2018 9:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

Re: HAI pump without Dr. K at MSK

These days have been harder as the news has gotten rougher. I am now waking each day and experiencing what it feels to know that you don't get to grow old. Hopefully Peri mets don't come along to join this story as well. I have an appointment at the Cleveland Clinic with an oncologist who apparently...
by Spazzyjanet
Sat Nov 17, 2018 9:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 35992

Re: Keytruda....Working for MSS....Mutation Burden is the Key

I've had Genomic testing. I am MSS. KRAS G12V. I have ERG and VEGF Amplifications. I have no idea what a "high tumor burden" is. How do I tell if this is good news for me or bad news?
by Spazzyjanet
Tue Nov 13, 2018 4:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

Re: HAI pump without Dr. K at MSK

The Cleveland Clinic is an option. However it still isn't MSK. And I can tell you that my husband will not be on board with traveling to NYC from Ohio every two months. We only have so much time off work to spare. I like the surgeon at the James so really the question is whether others outside MSK h...
by Spazzyjanet
Tue Nov 13, 2018 6:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

Re: HAI pump without Dr. K at MSK

It doesn't sound likely that I will be able to get my treatment managed locally in Ohio by MSK. I think I am going to have to call the nurse practitioner and see whether I can get information on who they have on staff that manages the chemo aspect and whether it is influenced by an algorithm or some...
by Spazzyjanet
Mon Nov 12, 2018 8:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

Re: HAI pump without Dr. K at MSK

To be fair, the surgeon I am referring to is local and can't offer me the pump. He was casting aspersions on the likelihood of my success with the second opinion surgeon at OSU. My husband is worn down and doesn't want to get an opinion from another doctor.and wants to go with the James and stick wi...
by Spazzyjanet
Mon Nov 12, 2018 5:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump without Dr. K at MSK
Replies: 26
Views: 2503

HAI pump without Dr. K at MSK

Every time we get a new test or talk to a new doctor the news gets worse. I circled back to speak with our local surgeon and he says that with the latest MRI my 6 mets are now about 11, certainly not something that he could deal with in one surgery. Probably multiple. His personal experience with me...
by Spazzyjanet
Mon Nov 12, 2018 6:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Almost 6 years
Replies: 29
Views: 3019

Re: Almost 6 years

Congratulations!
by Spazzyjanet
Mon Nov 12, 2018 6:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MRI of Peritoneum with Ostomy
Replies: 1
Views: 551

MRI of Peritoneum with Ostomy

I realize that this is a highly specific question, but I was told to schedule one of these and didn't think much of it, but I'm looking over the procedure and prep instructions and this seems quite daunting. - It requires a strict 48- hour diet - It involves a water enema (with a tube inserted in yo...
by Spazzyjanet
Sat Nov 10, 2018 4:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV to NED in 9.5 months!
Replies: 12
Views: 1514

Re: Stage IV to NED in 9.5 months!

Thank you for sharing. I am currently trying to decide between two surgeons and approaches, one of which involves an HAI pump. This helps me make my decision.
by Spazzyjanet
Fri Nov 09, 2018 6:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I got second opinions- HAI pump, HIPEC, and now decisions
Replies: 4
Views: 887

Re: I got second opinions- HAI pump, HIPEC, and now decisions

First of all, thank you so much for giving me some of your thoughts. -I called to schedule another appointment with my local surgeon on Monday to get a better understanding of his approach and his degree of confidence in it's success. Has he done this procedure before? And what was the outcome? -The...

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