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by Pyro70
Fri Apr 12, 2019 6:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 5135

Re: Stage 4 hope to share

I too was essentially symptom free during my 6 months of FOLFOX/avastin. After chemo and before my first surgery I took a 3 week road trip sightseeing and kiteboarding through Egypt. I didn’t follow any specific diet, so anecdotally it’s not required. You have to remember with all this unproven stuf...
by Pyro70
Fri Apr 12, 2019 6:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Last shot immunotherapy
Replies: 3
Views: 718

Last shot immunotherapy

I stumbled upon this NYT article about oncologists trying immunotherapy as a last shot, even if there isn’t any clear evidence (eg biomarker) that it will work in a specific patient. The article is about prostate cancer, but with MSS TMB moderate/high responders, similar arguments can be made for CR...
by Pyro70
Tue Apr 09, 2019 11:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Very hopeful news...cancer vaccine
Replies: 2
Views: 709

Re: Very hopeful news...cancer vaccine

The cancer vaccine is likely quite far away. I think there are a couple other agents more likely to beneficial in the near term, namely: *Stemmness inhibitor, napabucasin in combination with FOLFIRI currently in multiple stage III trials, with the first completing in June 2020, https://clinicaltrial...
by Pyro70
Thu Apr 04, 2019 9:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Disconnect & folfiri questions
Replies: 11
Views: 1134

Re: Disconnect & folfiri questions

Definitely should just disconnect yourself. When I was getting TPN my girlfriend was even accessing my port so I could swim during the day- it’s not so difficult.
by Pyro70
Tue Apr 02, 2019 6:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or not? And Doctors in MD Anderson
Replies: 17
Views: 2533

Re: Surgery or not? And Doctors in MD Anderson

DanDan, I wish you best of luck with the upcoming surgery. I am a fan of local control through surgery/ablation/radio even if it’s not with “curative intent”, but one needs to remember it always comes with risk. Thank you for sharing your NGS report. Can I ask what provider performed the testing? Al...
by Pyro70
Mon Mar 18, 2019 9:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?
Replies: 16
Views: 2539

Re: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?

Just update on my CRS/HIPEC treatment plan. I'm scheduled to have this procedure done at MGH with Dr. James Cusack. I was offered to participate in the study using LUM imaging system for detecting cancer cells during the surgery. This study was done for Breast cancer ( https://clinicaltrials.gov/ct...
by Pyro70
Mon Mar 18, 2019 8:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 38 year old with polyps
Replies: 11
Views: 1056

Re: 38 year old with polyps

Thank you for the replies. I'm not really sure why they don't seem too phased that poylps have been discovered in me so young or why they keep regrowing . He almost made it sound like it was a normal occurrence that he sees regularly . I'll see if I can find another specialties to ask... As for scr...
by Pyro70
Sun Mar 17, 2019 7:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 38 year old with polyps
Replies: 11
Views: 1056

Re: 38 year old with polyps

I would ask the GI again if it makes sense to check you for Lynch. I would also ask for fairly frequent screening (1-2 years). Colonoscopies unfortunately aren’t fool proof. I was under regular surveillance due to a very mild / asymptomatic case of UC. Had about 7 colonoscopies that came back clean....
by Pyro70
Sun Mar 17, 2019 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice please
Replies: 7
Views: 983

Re: Advice please

Your symptoms are non-specific and could be caused by a number of conditions. I’m not sure what country you are in, but you should try to get a referral to a competent GI specialist who can properly diagnose you. You can look up the stats yourself, but unless you have a hereditary/genetic abdomality...
by Pyro70
Sun Mar 17, 2019 3:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scared I have colon cancer at 17
Replies: 20
Views: 2239

Re: Scared I have colon cancer at 17

We are not doctors. We are cancer survivors or loved ones of survivors. We are not qualified to give out medical advice. Good luck. I hope you will find a proper diagnosis with your doctor. Most primary care physicians aren’t really qualified to diagnose this either. Just saying... If you’re still ...
by Pyro70
Thu Mar 14, 2019 6:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?
Replies: 16
Views: 2539

Re: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?

Thank you Pyro70. I have an option to go with local surgeon. But from what I read so far, the CRS is a very extensive procedure and you would benefit greatly if you go with an experienced surgeon. At MSK, I will have Dr. Nash. My local surgeon is board certified in 2013. I saw a negative review on ...
by Pyro70
Thu Mar 14, 2019 3:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?
Replies: 16
Views: 2539

Re: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?

Also please be aware all HIPEC studies have been negative. I would consider getting CRS without HIPEC.
by Pyro70
Thu Mar 14, 2019 3:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?
Replies: 16
Views: 2539

Re: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?

Sorry, I don’t know what the cost for the total surgery would be at MSK. But you could ask them. Mind you, though, it’s really hard to estimate the total cost since the cost depends largely upon how long your recovery is and length of hospital stay. So the insurance will only not cover it because it...
by Pyro70
Thu Mar 14, 2019 1:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why you really need to know your tumor genetics
Replies: 21
Views: 2110

Re: Why you really need to know your tumor genetics

Hi Amy, As mentioned up-to-date is good go to source. It’s basically intended to be the most current (up to date) reference for physicians. Their guidelines are frequently reviewed and updated by expert physicians and the articles include references to the source studies. The article below is likely...
by Pyro70
Wed Mar 13, 2019 5:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why you really need to know your tumor genetics
Replies: 21
Views: 2110

Re: Why you really need to know your tumor genetics

Hey Pyro! My tumor was left sided, sigmoid colon was damn near totally obstructed. As for why not starting with liver resection, I was under the impression they wanted it smaller to be sure they can obtain clear margins. I believe my met is in segment 6 or 7. Due to being pregnant, no one has reall...

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