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by rp1954
Mon Apr 22, 2024 11:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 years coming up soon
Replies: 8
Views: 210

Re: 5 years coming up soon

Four years on ADAPT +++ / ++++ with an anti-circulatory continunity, range, improvements, and lifestyle that your would be Folfiri-mab dispensers can only envy. Congratulations on pulling out of the familiar spiral that was forming after Folfox failed you. Having mets show up eventually 3 1/2 [yrs] ...
by rp1954
Sat Apr 20, 2024 4:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NCCN Guidelines: Colon Cancer & Rectal Cancer
Replies: 2
Views: 1754

Re: NCCN Guidelines: Colon Cancer & Rectal Cancer

The NCCN guidelines have been substantially expanded and refined since 2010 (my wife's dx), including their split into separate Colon and Rectal Cancer versions, with a number of new targeted drugs, mostly for metastatic cancer patients. These guidelines represent the current "standard of care&...
by rp1954
Sat Apr 06, 2024 11:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: T3cN2a, refusing chemotherapy?
Replies: 83
Views: 40074

Re: T3cN2a, refusing chemotherapy?

Last round of xeloda I got horrible blisters on my feet. I could not walk, I had to crawl on the ground. Thanks for getting back to us. Sorry that your doctor(s) didn't have the knowledge/skill levels to prevent that last HFS part. Overall, I think you likely still had better results, even with tha...
by rp1954
Wed Apr 03, 2024 1:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 15
Views: 6829

Re: VAXINIA (CF33 + hNIS) clinical trial

after treatment he had a +49% increase in tumour size, prior to the subsequent shrinkage to zero . We had a somewhat similar warning about potential "tumor swelling" from our endocrinologist, JJ Prendergast (dec'd), about immune responses after 50k-100k megavitamin D tx for cancer patient...
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: 12
Views: 3178

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: 1503

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: 83
Views: 40074

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: 23
Views: 4732

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: 41
Views: 8630

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: 41
Views: 8630

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: 1858

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: 2132

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: 2132

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: 1871

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: 41
Views: 8630

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...

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