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by rp1954
Tue Oct 30, 2018 2:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 23 years old with stage 4 colon cancer
Replies: 12
Views: 1717

Re: 23 years old with stage 4 colon cancer

I have a few suggestions that may be different but important. A lot of our younger members have had very dangerous mutations, like BRAF, and are not well controlled by conventional oncology. One, do some extra blood testing yourselves. This is as simple as picking up the phone and dialing an 800 num...
by rp1954
Sat Oct 27, 2018 7:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Frankicense?
Replies: 4
Views: 808

Re: Frankicense?

We have used boswellia with 5FU fine, but never used oxaliplaten. So no special specific research or insights on oxi+boswellic acids here.
by rp1954
Mon Oct 22, 2018 4:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DH had surgery consult yesterday for para aortic nodes
Replies: 17
Views: 4268

Re: DH had surgery consult yesterday for para aortic nodes

His initial recurrent lymph node states it is an interaortocaval node. The new ones are stated with one as same description and other as left paraaortic retroperitoneal lymph node. The dr really only stated more than one node negates surgery. Cea is 1.5. CA-199 is 7.55. He is MSS with no KRAS mutat...
by rp1954
Thu Oct 18, 2018 12:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Worried -genetic results are in. KRAS MSS
Replies: 18
Views: 1246

Re: Worried -genetic results are in. KRAS MSS

Take a deep breath. I would look very hard now at CEA, LDH and CA199 (you probably need to order these your self for speed and convenience, at least a first time). It may be that a choice could be made between normal Xeloda treatment, Xeloda+mild, generic adjuncts, and Folfox. The results from some ...
by rp1954
Mon Oct 15, 2018 11:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MCV blood test
Replies: 4
Views: 411

Re: MCV blood test

MCV is typically raised by chemo. Various degrees of elevation during chemo are considered by some doctors as an indication of good response to chemo. There is some prior discussion in the archives. Not so sure about raised MCV after heavy duty chemo or damage, but with our immunochemo, MCV falls at...
by rp1954
Mon Oct 15, 2018 12:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 3 to 4
Replies: 19
Views: 1807

Re: Stage 3 to 4

What's your CEA, CA199 and LDH?
by rp1954
Fri Oct 12, 2018 12:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: lymph node tested positive :(
Replies: 14
Views: 1610

Re: lymph node tested positive :(

oral chemo+supplemental chemistry asap, + 2nd surgery + later adding celecoxib (from ADAPT) is what we did. I do suggest noting CEA, CA199, LDH as minimal markers for this approach if they are even "average" - e.g. CA199 over 12 or 22 and LDH over 170. We do something more like CBC and ext...
by rp1954
Fri Oct 12, 2018 12:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Internal Iliac Node involvement??
Replies: 18
Views: 1666

Re: Internal Iliac Node involvement??

The real issues are keeping the nodes contained, and destroying or removing them. In the US traditionally this is "chemo forever" territory - chemo until the drs run out of protocols or chemo itself is too much for the patient to handle. However, like the article says, surgical removal of ...
by rp1954
Sat Oct 06, 2018 3:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with peri mets who survived?
Replies: 14
Views: 2139

Re: Anyone with peri mets who survived?

We got rid of the peri mets between the initial diagnosis and first surgery, with likely several different circumstances. The peritoneum is a macrophage rich area of the body. Macrophages, a type of granulocyte, can be helpful or harmful depending on their immune properties. So in many cases, perito...
by rp1954
Sat Oct 06, 2018 3:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about necessity of CEA labwork
Replies: 31
Views: 2308

Re: Question about necessity of CEA labwork

Stage 2 CC, 87 and needs chemo but not a CEA ?!? He needs more informed, more broad minded drs. To a degree this may express some kind of cost contained medicine, perceived age futility on more surgery, or personal dr preference, but I would view it as wholly inadequate. To me, bad attitude means fi...
by rp1954
Tue Oct 02, 2018 1:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Such a blow!
Replies: 9
Views: 1278

Re: Such a blow!

Have you had them check for MSI-H? You've had 3 brushes with different cancers and that may suggest MSI-H. If so, then you could focus on getting some kind of PD-1 inhibitor treatments, which have a pretty good batting average.
by rp1954
Mon Oct 01, 2018 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New diagnosis and scared
Replies: 30
Views: 2559

Re: New diagnosis and scared

The more specifics you can measure or document here, (extra) blood tests , pathology, and scans, the more chances you might find more answers. Many people use their signature to summarize these. It is important to not let any potential mets or micromets grow unchecked, some kind of chemo ASAP is imp...
by rp1954
Mon Oct 01, 2018 2:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DH had surgery consult yesterday for para aortic nodes
Replies: 17
Views: 4268

Re: DH had surgery consult yesterday for para aortic nodes

Gringo, why did MSK say surgery is off the table? Location? Conventionally, para-aortic lymph nodes are usually considered systemic, "chemo forever" territory, and futile for radiation or surgery. Since 2010, when we started, the surgical literature has grown. Papers show big improvements...
by rp1954
Thu Sep 27, 2018 1:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: IMMUNOTHERAPY
Replies: 25
Views: 7307

qualities

qualit ies There are several aspects that should be considered. Specific proteo-glucans content are one aspect of strength and quality and the differences between PSK, PSP, and clones. The bulk of the CRC, chemo and mushroom extract data that are available, are for PSK, the hot water extract of a p...
by rp1954
Thu Sep 27, 2018 5:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: IMMUNOTHERAPY
Replies: 25
Views: 7307

Re: IMMUNOTHERAPY

It is early Thursday morning in various US time zones, I'm not sure about Saturday (Fedex, UPS) vs Sunday deliveries (USPS Express mail?) from the manufacturer. It is sometimes possible to redirect or return packages in flight with the tracking number.

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