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by rp1954
Tue Mar 05, 2024 12:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 3720

Re: New guy with old questions.

....if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend. A well formatted spreadsheet saves time, helps clear thinking, and communicates faster and better. I just spent some minutes updating it every few weeks...
by rp1954
Thu Feb 29, 2024 7:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 3720

Re: New guy with old questions.

...your research and advocacy on behalf of your wife are simultaneously daunting and inspiring. If you do the simple conversational interactions I've suggested with (y)our whole blood work, it shouldn't be so daunting - it really cuts the reading way down and allows normally delayed sequential acti...
by rp1954
Sat Feb 24, 2024 6:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stability of lung mets…
Replies: 8
Views: 766

Re: Stability of lung mets…

Has anyone had longish term success where chemo has just kept the mets stable, but still visible on scans/similar. Looking for some nice stories that exclude NED :) We can only claim one lung nodule that disappeared, along with several liver nodules plus stability in multiple LN when immunochemo re...
by rp1954
Mon Feb 19, 2024 9:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pet scan
Replies: 10
Views: 766

Re: Pet scan

1)Along with elevated ALP levels, some patients with bone mets may have ( not always ) hypercalcemia (elevated blood calcium). Has your blood calcium been elevated recently? We used menatetrenone (the vitamin K2 isoform also known as MK4) to knock down hypercalcemia, and based on her lab tissue tes...
by rp1954
Mon Feb 19, 2024 1:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pet scan
Replies: 10
Views: 766

Re: Pet scan

I had a pet scan last week. I got the report today. There were 2 intensely avid lymph nodes in the prevascular and subcarinal region and also a shoulder acromion metastasis with an undisplaced fracture. I’ve had recent X-rays and a ct before this that showed nothing but bursitis. I don’t know what ...
by rp1954
Mon Feb 19, 2024 1:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Schedule of IVC
Replies: 10
Views: 1655

Re: Schedule of IVC

Is there a particular brand or supplier that you prefer? McGuff in the US is the only FDA approved version of 500 mg/mL liquid C concentrate but 4x its 2010 price preFDA. The FDA now bullies US state based compounding pharmacies (bottlers) of vitamin C concentrate, usually 400 - 500 mg C/mL. Some E...
by rp1954
Wed Feb 14, 2024 3:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 3720

Re: New guy with old questions.

First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes...
by rp1954
Tue Feb 13, 2024 2:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 3720

Re: New guy with old questions.

My gut feeling in asking the question was that the likely proper response is NOT to wait on surgery. Knowing what I've seen, read, and all we did, I would say the biggest question is about optimum - WHICH surgery and conditions. Because we took the initiative and aggressively went beyond "stan...
by rp1954
Sun Feb 11, 2024 5:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 3720

Re: New guy with old questions.

Quick update not that it matters a great deal, but just so future posters might learn from my experience. I was quite worried about the side effects of FOLFIRINOX, but I've finished the my first infusion and am scheduled for my second round tomorrow AM but my side effects from the first round were ...
by rp1954
Tue Feb 06, 2024 4:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Uncommon metastasis for colon cancer
Replies: 10
Views: 2541

Re: Uncommon metastasis for colon cancer

...My husband also has had a very unusual cancer so far - pretty much everything in the past 6 years has been in the <1% of cases: no primary, isolated lumbar vertebrae met -> adrenal gland met -> rectal primary discovered 4 years down the road -> plexopathy from too much radiation -> isolated ilia...
by rp1954
Mon Feb 05, 2024 11:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea after surgery
Replies: 4
Views: 757

Re: Cea after surgery

Some asian hospitals have used tighter CEA data, e.g. add one: a day before op, a day(s) after op, 6-10 days later, plus the other "regular" CEA data series, to try to address removal thoroughness and recurrance issues. Likewise, improved use of NSAIDs, nutrients, and IV vitamin C reduces ...
by rp1954
Mon Feb 05, 2024 11:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How obsessed are you all with diet?
Replies: 10
Views: 1530

Re: How obsessed are you all with diet?

... but i read online how anti oxidant supplements can interfere with chemotherapy effectiveness.... I would suggest , again , that that phrase preys on the intellectual sloth, FUD, and chemical illiteracy of many patients and doctors with broad, confounded, non-specific terminology like "anti...
by rp1954
Mon Feb 05, 2024 10:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pleural effusion management
Replies: 3
Views: 825

Re: Pleural effusion management

I can't add any of our specific experience directly on effusions with various possible products in the fluid. My view of natural ingredients would differentiate those effects supportive of metabolism and immune function, and those that dented the cancer cells or pathways. If you could review your MC...
by rp1954
Wed Jan 31, 2024 4:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 with single met to liver
Replies: 6
Views: 1095

Re: Stage 4 with single met to liver

]I was originally diagnosed with Stage 1 and ended up with a liver met a year later...[then]another recurrence... had a reaction to the CAPOX today ... where I couldn't breath ...my joints are numb, I'm all butter fingers... and I have minor tremors Thanks for your post. Sorry for your setbacks. it...
by rp1954
Mon Jan 29, 2024 6:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo resistance
Replies: 7
Views: 1488

Re: Chemo resistance

Got it on the spreadsheet. I will go back and create that from the beginning. I wasn’t doing any supplements prior to having the HAI installed and that is when the chemo was working so I don’t think it will help much but it will be good to have the numbers on paper. Since the chemo resistance start...

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