Stage 4 CRC -- are trials worth it?

This is going to human trials. I am currently in mop up chemo, and obviously I hope that it will kill any hidden cells and I live a healthy life after this chemo. BUT, this study is the one that gives me hope when I worry about the "what if" it comes back. 

https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html

I know where you stand. Quality of life is important, but the will to fight is so strong. 

I heard of a friend, just today, with advanced prostate Cancer, spread to the bones. He has been on immuno trials and the bones are now clear. His prognosis is still the same for the prostate, but it is proof that these imminotherpaty drugs are the future treatment. I would opt for the trials after some heavy research. 

Nine years is impressive, but once you get there, its still not enough. Nine more please, and then nine again. 

My thoughts and prayers are yours. Good luck with your decison (of which I have been no help). 

Tru

Something some of us have pursued, are what others call "virtual trials" - partly roll (y)our own treatment.  Usually sooner than later e.g. from the moment I got the "I-have-colon-cancer" phone call, I knew our direction was to find extra, nicer options.  I already knew about Life Extension Foundation and pre-op cimetidine. 

The medical literature has a lot of missed opportunities and under- or unused technology.  Much of it uses cheap,generic stuff - that's one of the "problems" for funding.   The generic drugs have lower side effects or can be dosed at minimal side effects.  Nutraceuticals can have better side effect profiles, even  improvement for a side effect.   

What can you do, under your own direction, on the move, and no waiting ? 

Papers show/suggest that metronomic (e.g. daily) oral 5FU chemo can retreat some 5FU resistant colon cancers.  I found an inexpensive generic, oral 5FU drug that, after 30 minutes, my wife said  "I feel better"; it metabolizes to GHB (abused by party hounds at 10x more) and 5FU. Manufactured in SKorea(Tefudex), Taiwan(UFUR), India, Japan (UFT), versions might be available in Mexico, tegafur-uracil is on their national pharma list, but it is not highly advertised like Xeloda was.

5FU can be re-invigorated or cancers re-sensitized with new chemistry in the guise of off-label drugs (#1 drug candidate, Celebrex) and nutraceuticals, many natural anti-inflammatories (modulate cytokines), flavonoid extracts and beta glucans (including mushroom  extracts).  We combine multiple nutraceuticals, things sometimes obscene to conventional medicine but... so far, painless.  For instance, we found a long time endcrinologist and researcher, UCSF trained, that advocated 50,000 iu per day vitamin D3 forever (plus some MK4 vitamin K2 and chelated magnesium) for many cancers including CRC, and even 100,000 iu per day for short fuses.  We just added it to the stack, avoiding calcium supplements. Ditto 600 mg coQ10, IV vitamin C, oral 200mg B6/P5P, and more off the LEF list.

Slow the mCRC down, "accident"/disappear some mets, reduce/eliminate exisiting pains, improve cell, body and organ performance is our approach.  Patients have led longer, normal lives, even days before their death, e.g. 3 days in a down spiral over the weekend for one longer survivor, guy who chopped wood on Friday, gone on Monday.  Of course, it varies.

I'd say if you have the access and the means to go on the trial and as long as it doesn't give you much physical toll, go for it! Its not yet over until its over, take whatever chance you can get.  If you think the risks outweigh the benefits, try other alternative means (herbals, etc.).  Keep giving yourself hope, the body will follow.  

Hi everyone. I wish all of you get NED very soon.

My sister 42 y. slim, fit, no previous health conserns, no family issue, was diagnosed 2 m ago with stage 4 crc , with liver and ovary mets. . She just started this journey. Last week shortly before her treatment started she got  a bowel obstruction and ended up in hospital. She was suggested this trial https://clinicaltrials.gov/ct2/show/NCT03050814. Just wonder if someone had it and what results was? Are there other therapies like hypertermia or herbal can be used?

Thank you all for your support. 

gul1976 said:

Question about trials.

Hi everyone. I wish all of you get NED very soon.

My sister 42 y. slim, fit, no previous health conserns, no family issue, was diagnosed 2 m ago with stage 4 crc , with liver and ovary mets. . She just started this journey. Last week shortly before her treatment started she got  a bowel obstruction and ended up in hospital. She was suggested this trial https://clinicaltrials.gov/ct2/show/NCT03050814. Just wonder if someone had it and what results was? Are there other therapies like hypertermia or herbal can be used?

Thank you all for your support. 

 

I am sorry to hear of your sister's diagnosis. 

May I suggest you start a new thread here https://csn.cancer.org/forum/128

That way, all of the answers will be to you and not mixed up with the orignal posters thread. 

Tru

gul1976 said:

Mikenh, thank you for your

Mikenh, thank you for your nice advice and I will pass it to my sister. 

Please report back if she chooses it - this is a very important trial that could result in people not having to go through regular chemo/surgery in the future. It could also provide a lot of hope for Stage 4s, and lower stages worried about recurrence.

OzarkGal said:

Immunotherapy

Correct me if I am wrong but my understanding is that immunotherapy is for the 5 percent of colon cancers that are MSI (microsatellite instable).  For MSI, the mutation presents on the cell surface whereas MSS (microsatellite stable) tumors present the mutation inside the cell.  My tumor is MSS.

I don't think there is a lot going on for MSS tumor research.  This is what Dr. Tom Marsiljie had.  He was the lung cancer researcher who got colon cancer and passed away this past November.  He developed the trial finder tool for Late Stage MSS.  I believe the tool is being maintained by Fight Colorectal Cancer staff/volunteers.

https://fightcolorectalcancer.org/blog/new-improved-mss-colorectal-cancer-clinical-trial-finder-released/

THe TIL therapy is the important immunotherapy for MSS. It's proven on KRAS G12D with the HLA-C-08:02 Allele (rare) and it's been demonstrated on HLA-A 11:01 (might have the Alleles a bit off). Celine was the first patient and was cured with the TIL therapy at NCI. Tom was familiar with it. They are working on other gene mutations now as well.

The cancer vaccine is something different. I don't know how it works or who it works on.

https://ccr.cancer.gov/sb-faqs

tanstaafl said:

virtual trials

Something some of us have pursued, are what others call "virtual trials" - partly roll (y)our own treatment.  Usually sooner than later e.g. from the moment I got the "I-have-colon-cancer" phone call, I knew our direction was to find extra, nicer options.  I already knew about Life Extension Foundation and pre-op cimetidine. 

The medical literature has a lot of missed opportunities and under- or unused technology.  Much of it uses cheap,generic stuff - that's one of the "problems" for funding.   The generic drugs have lower side effects or can be dosed at minimal side effects.  Nutraceuticals can have better side effect profiles, even  improvement for a side effect.   

What can you do, under your own direction, on the move, and no waiting ? 

Papers show/suggest that metronomic (e.g. daily) oral 5FU chemo can retreat some 5FU resistant colon cancers.  I found an inexpensive generic, oral 5FU drug that, after 30 minutes, my wife said  "I feel better"; it metabolizes to GHB (abused by party hounds at 10x more) and 5FU. Manufactured in SKorea(Tefudex), Taiwan(UFUR), India, Japan (UFT), versions might be available in Mexico, tegafur-uracil is on their national pharma list, but it is not highly advertised like Xeloda was.

5FU can be re-invigorated or cancers re-sensitized with new chemistry in the guise of off-label drugs (#1 drug candidate, Celebrex) and nutraceuticals, many natural anti-inflammatories (modulate cytokines), flavonoid extracts and beta glucans (including mushroom  extracts).  We combine multiple nutraceuticals, things sometimes obscene to conventional medicine but... so far, painless.  For instance, we found a long time endcrinologist and researcher, UCSF trained, that advocated 50,000 iu per day vitamin D3 forever (plus some MK4 vitamin K2 and chelated magnesium) for many cancers including CRC, and even 100,000 iu per day for short fuses.  We just added it to the stack, avoiding calcium supplements. Ditto 600 mg coQ10, IV vitamin C, oral 200mg B6/P5P, and more off the LEF list.

Slow the mCRC down, "accident"/disappear some mets, reduce/eliminate exisiting pains, improve cell, body and organ performance is our approach.  Patients have led longer, normal lives, even days before their death, e.g. 3 days in a down spiral over the weekend for one longer survivor, guy who chopped wood on Friday, gone on Monday.  Of course, it varies.

Hi there, could you provide some more information about the vitamin therapies? where can we read more about this? Many thanks!

  Keep on keeping on