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by rp1954
Tue Mar 26, 2024 6:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advice for next steps
Replies: 10
Views: 1308

Re: Need advice for next steps

The best lung surgery option may be in a specialty lung hospital in Coswig, Germany, near Dresden. They are radically more efficient in tissue sparing and more mets recovered in an operation than any North American hospital. Read/search on this forum for Rolles laser (lung) surgeries for lung mets. ...
by rp1954
Sat Mar 23, 2024 2:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance
Replies: 4
Views: 278

Re: Insurance

OK, I got a letter from BCBS stating they put my capcetibine under review and it will be under review every year provided it be rx'd with in network provider. So, are they planning to exclude certain doctors outside of SOC? My onc is intergrative. I can see trouble coming with several scenarios for...
by rp1954
Wed Mar 20, 2024 8:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: T3cN2a, refusing chemotherapy?
Replies: 81
Views: 29755

Re: T3cN2a, refusing chemotherapy?

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine... 2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to i...
by rp1954
Wed Mar 20, 2024 8:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung met
Replies: 17
Views: 587

Re: Lung met

Sounds like something might be missing in communication - what did they see that they think that is so pessimistic - just the 0.6 cm met and its pathology alone or as a (biopsy) representative of multiple/multitudinous thingies on a CT? A big reason that I started digging out blood panel stats and i...
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: 4199

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: 4199

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: 1001

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: 970

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: 970

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: 1773

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: 4199

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: 4199

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: 4199

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: 2678

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: 787

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 ...

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