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by rp1954
Mon Mar 25, 2019 4:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to tackle Xeloda side effect
Replies: 7
Views: 256

Re: How to tackle Xeloda side effect

We're not drs, and we have little concrete idea what your biology is, beyond population odds and your stated preliminaries - some things more common than others. So yes, we eliminated most of my wife's chemo toxicity for her oral chemo - another 5FU derivative, increased the chemo drug's cancer inhi...
by rp1954
Sun Mar 24, 2019 6:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Getting liquid biopsy for surveillance and treatment monitoring
Replies: 3
Views: 267

Re: Getting liquid biopsy for surveillance and treatment monitoring

Just get started on the ctDNA, a repeat sampling procedure while on chemo is another homework item over the next month or two. I would suggest that you go ahead and do more of that extra initial bloodwork that I normally talk about e.g. AFP, LDH, cerruloplasin, ferritin, quantitative D-dimer etc. Mi...
by rp1954
Sat Mar 23, 2019 9:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Getting liquid biopsy for surveillance and treatment monitoring
Replies: 3
Views: 267

Re: Getting liquid biopsy for surveillance and treatment monitoring

Has there been any discussion about separation time required between 5FU / DFUR treatments, or 5FU residual in the blood, and the ctDNA draws while on treatment, to avoid interference?
by rp1954
Fri Mar 22, 2019 1:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or not? And Doctors in MD Anderson
Replies: 7
Views: 359

Re: Surgery or not? And Doctors in MD Anderson

Chemistry depends on the biology. Could you share your wife's MSI/MSS/MMR status, genetics or KRAS/BRAF status, and some blood work like Hopie formatted and did here ? (you can see it properly from the quote - edit mode button, [ " ]) The most crucial initial lab data people are usually missing...
by rp1954
Thu Mar 21, 2019 8:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or not? And Doctors in MD Anderson
Replies: 7
Views: 359

Re: Surgery or not? And Doctors in MD Anderson

Thank you very much for your comments. I'll ask the surgeon about if it's locally curative. You need to gently tell the surgeons (candidate drs) that you accept (or respectfully demand) a locally curative surgery, as part of a larger multimodal plan , hopefully with advanced techniques sequenced fr...
by rp1954
Wed Mar 20, 2019 12:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or not? And Doctors in MD Anderson
Replies: 7
Views: 359

Re: Surgery or not? And Doctors in MD Anderson

My view in this type of situation was to try to find a multimodal path, e.g. locally curative surgery(s) with more chemical coverage and less chemical damage. More options were available when we found, assessed and assembled diverse options ourselves. More chemical coverage? Fewer untreated gaps (e....
by rp1954
Mon Mar 11, 2019 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coordination between oncologists - how to proceed?
Replies: 8
Views: 353

Re: Coordination between oncologists - how to proceed?

I interviewed varied oncologists, mostly once, and watch for more interesting, low tech research papers. Some of Dr Lin's mCRC patients with recurs, previously treated with several rounds of heavy chemo did much better on just ADAPT (celecoxib + Xeloda). With high potency, targeted supplements added...
by rp1954
Mon Mar 11, 2019 5:43 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New member: I Have A Tumor- update
Replies: 2
Views: 220

Re: New member: I Have A Tumor

Don't know about what blood tests they got when you got your colonoscopy, but we found we wanted more blood information than were taken at diagnosis, before and after surgery. In fact, one of my parents' had better blood data taken in the 1980's than we did in 2010. Better early information (before ...
by rp1954
Thu Mar 07, 2019 9:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why you really need to know your tumor genetics
Replies: 21
Views: 840

Re: Why you really need to know your tumor genetics

You need to get as much lab data as possible on Day 1 , including genetic, to avoid losses, present and future. Medicine often does a poor job of this on an asset basis e.g. if they were managing a multimillion dollar technical asset to avoid larger loss, or to maximize yield. The rationing aspects ...
by rp1954
Wed Mar 06, 2019 6:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mother just DX cancer
Replies: 6
Views: 347

Re: Mother just DX cancer

There are extra things you can do for your mother, especially if you are worried about her age and fragility. The cimetidine option for before/after/even during surgery is a notable one time opportunity for a good outcome, right now. It has been discussed a lot here. You might want to read the story...
by rp1954
Wed Mar 06, 2019 11:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possibly still NED...our story to date
Replies: 97
Views: 6985

Re: Possibly still NED...our story to date

Ultra low CA199, less than 2 units, means that cimetidine cannot not do any good as a long term treatment. I'm not sure about a minimal short course for perioperative, e.g. 800 mg for 5-10 days (BSA for 100 kg). Time to stop the long term cimetidine program. i'd revisit the previous surgeon's Celebr...
by rp1954
Tue Mar 05, 2019 2:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Preparing a facts & to-do-list for "newcomers"?
Replies: 25
Views: 1610

Re: Preparing a facts & to-do-list for "newcomers"?

My suggestion is that an emphasis on "Day 1" recommendations and actions or as close as possible be made. For this is where people are losing options, robbed of comfort and years of their future. It actually would be best if we could convince a medical group, like the (diagnosing) gastroen...
by rp1954
Mon Mar 04, 2019 5:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to tackle Xeloda side effect
Replies: 7
Views: 256

Re: How to tackle Xelonda side effect

Normally, if it's bad enough, what's likely to happen is that they'll reduce your dosage and/or your treatment schedule. One thing that made my wife's oral chemo more difficult is food and supplement borne, folic acid - the common, absolute wrong form of vitamin B9 for 5FU based chemo. Folic acid - ...
by rp1954
Mon Mar 04, 2019 11:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver mets: ablation vs. surgery, pros? cons?
Replies: 33
Views: 1805

Re: Liver mets: ablation vs. surgery, pros? cons?

This is her no.1 liver source . Bought fresh, chicken livers at home, seared or cooked. Chicken liver is very high in folate. She had a restaurant that nominally served unlimited pate, but I suspect more chicken than goose liver. I eliminated (excess) vitamin A from her supplements so as not to inte...
by rp1954
Mon Mar 04, 2019 4:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver mets: ablation vs. surgery, pros? cons?
Replies: 33
Views: 1805

Re: Liver mets: ablation vs. surgery, pros? cons?

Many blood panels that you don't already have, will be more distorted with each chemo, the best versions before/after surgery. If our doctors don't order our requests, we order ourselves. A lot of people let doctors destroy their information and options, by a lack of cooperation or just letting agre...

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