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Stage 4 CRC -- are trials worth it?

optimist777
Posts: 38
Joined: Feb 2018

Hi everyone, I've already asked this before in a different post, but thought it wouldn't hurt to ask again in an attempt to make a rational decision.  I'm currently have stage 4 colon cancer, been stage4 for 9 years, now age 44, male, really nice guy.  Why is it the nicest people always get cancer? 

Anyway, here is my situation, I've run out of all conventional chemo regimens at my local hospital, and my doctors only suggestion to to seek a trial.  I tried OHSU hospital in Portland OR, but they did not have a trial for me.  The only thing my local oncologist then suggested is a try going to a larger research hospital like Memorial Sloan, or MD Anderson to see if a trial was available for me there.  It is sort of a miracle but I still don't have cancer in my lungs or liver, but a have a lot of inoperable cancer in my retroperitoneal lymph nodes (mid-lower back area), and my CEA numbers are jumping like crazy, and my pain is moderate and increasing steadily.  I figure I probably have 2-6 months if I do nothing.

This is a hard question-- but do you really think maybe some new trial is available right now at one of these large hospitals that would be worth jumping into, or if I'd even qualify?  Immunotherapy miracle type stuff-- or some amazing targeted drug?  Has anyone recently gone to these large cancer hospitals with stage4 and had success with a new trial?  Or, is that super unlikely, and it would it just be a waste of time, and not be worth the effort, commute, sickness, scans, not to mention not even having the trial even work, etc.  I'm very tempted to just buy a ticket and fly out to Hawaii even tomorrow, just to enjoy some pretty sites with the short-time I have left with some people I care about.  I can't decide between these two plans-- both so very different.  In the end, it's my decision, and there are no right answers, but I would love to here from others.  Thank you.        

abita's picture
abita
Posts: 605
Joined: Dec 2017

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

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Hope you don't really believe you only have such a short time left. After all, you are a 9 year veteran survivor now! That is awesome for someone like me who is only 10 months into this nightmare. I ditched conventional treatment after my surgery last October and am feeling great using alternative treatments. Sadly, I am not a candidate for immunotherapy. 

Just a suggestion. And please don't give up hope! 

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

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

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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.

Makord
Posts: 35
Joined: Oct 2017

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

optimist777
Posts: 38
Joined: Feb 2018

Thank you everyone, you are all very helpful.  I might try to do a quick flight to MD Anderson at least to talk to an oncologist about the trials, and see what comes from it, and it doesn't mean I need to jump into anything.  

Tanstaafl you are crazy smart, I really learn a lot from your posts.  And I know you are on the right track--based on my own experiences.  Maybe you could speak in layman terms for me.  I'm very interested in your theory of re-sensitizing Xeloda, I'm just not quite sure how to do it.  I know you already explained in the above post, but could you provide a quick 'basic getting started' list of medications, vitamins, and supplements (and amounts per day), I could take that would be easy to obtain on-line or local drugstore-- preferably without a doctor prescription-- and I will get started trying a new regimen to re-sensitize Xeloda.  I will keep you posted on my results.          

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I think that Immunotherapy is the next great hope but it will take a while to get there. Right now it works for some. If I were Stage 4, I’d look at TIL at NCI but that’s because I know my gene mutation. A lady I know of brought her husband to MSK with BRAF V600E, a really nasty mutation for a clinical trial last summer and he died a few weeks ago and that was tough for all the people rooting for her. OTOH I’ve run into a few peopel where the TIL therapy worked. Also run into several people that had chemo and surgery to get it all out. I know how rough chemo is and I don’t know how long I could keep it up myself.

plsletitrain
Posts: 253
Joined: Jul 2017

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.  

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

There are always new trials coming on the market so there could possibly be one for you.  It's always a good thought to have an option open to you and if you are willing to take that "leap of faith" and go for something conventional, trial, or even unconventional, if you can handle it and ok with it it's worth a shot.  Good luck on your decision.

Kim

gul1976's picture
gul1976
Posts: 37
Joined: Mar 2018

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. Cry. 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. 

 

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

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

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I’d want to know more about the vaccine and if it cures her specific gene mutation. The study does genomic tumor analysis but requires her old tumor biopsy, likely so that they can do the genomic analysis to see if what they are testing will work with her gene mutation. This normally costs a few bucks and insurance doesn’t usually cover it and they will likely pick up that cost and then she will know exactly what she has. You just need to be sure that the biopsy is still available.

gul1976's picture
gul1976
Posts: 37
Joined: Mar 2018

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

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

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's picture
OzarkGal
Posts: 41
Joined: Oct 2017

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/

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

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

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

Thank you for the information on TIL.  I wish that I lived closer to NCI. 

optimist777
Posts: 38
Joined: Feb 2018

Hi everyone, just thought I'd post an update.  I have stage4 colon cancer, 44 years old, (been fighting this disease for over 9 years) and my local oncologist had no further chemo options to provide for me, and suggested I look for a trial at MD Anderson.  After much thought, I just didn't have it in me for more cancer treatments.  I basically sold everthing I could, maxed out my credit cards, left rainy Oregon, and just rented a nice little place near the beach in Hawaii.  I'm now just eating lots of vegetables, walking in the sun a lot, (now watch me get skin cancer-- hope not), and just generally enjoying life.  I brought my dog with me.  My doctor gave me less then 3 months to live if I didn't seek a trial-- but I'm doing my best to prove them wrong.  It is so nice not to be on any chemotherapy, and not be in any hospitals.  I'm enjoying that.  And to be fair, I'm not in that much pain for the moment.  We all choose our own path, and this was right for me.  I will keep you posted in coming months.     

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

Cool  Keep on keeping on

PamRav's picture
PamRav
Posts: 246
Joined: Jan 2017

so brave.  I totally respect your choice.   Hope you will keep us apprised of your Hawaiian adventures. Enjoy the food and the sunshine 

peace and joy to you

pam 

 

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