stage4 colorectal -- advice welcomed

optimist777

Hi Everyone, I'm just discovered this board about a month ago, and could really use some advice.  I really admire all of you providing support and fighting this frustrating disease.

First, a little background.  Not that its related but I was first diagnosed with a rhabdomyosarcoma (tumor) at six months old as a (infant) boy to my chest area.  After multiple surguries and 18 months of chemo I somehow did the impossible and beat it.  I put that early cancer fight completely out of my mind for the next 35 years.  At age 35 I was a pretty elite athlete completing in triathalons, iron man competitions, and was pretty focused on health and fitness.  I had a pretty happy life, great family and friends, was thinking about getting married, etc.  I had a pretty healthy diet, but like many Americans it probably could have been better.  I had no family history of cancer, other then my mother was diagnosed with stage1 breast cancer 5 years ago, and appears to be cured from it.  I can't find any other trace of cancer in my family, grandparents, aunts, uncles, etc, and no colon cancer.

At age 35 (2009) I began having some stomach pain but it would always go away.  Sometimes it would almost appear like the flu.  One time I saw some blood in my stool, but I thought it must be hemorroids, even though I had never had hemorroids.  Although I began getting tired, I found myself blaming it on other things, working too much etc.  Believe it or not, I was still running five miles per day just before diagnosis, despite being anemic.  Finally one day I had leg pain (a DVT) blood clog to the leg which brought me to the doctor.  It was then, that they ran scan, and completed a colonscopy and informed me I had stage4 colon cancer.  I had colon cancer in my sigmoid colon, retroperitoneal lymph nodes, and supraclovicular lymph nodes to the neck.  Do date, I have not had colon cancer to the liver or lungs.  To make a long history short, I had DVT vascular surgery to fix my leg, a colostomy and re-section, and radiation to my neck area which removed the colon cancer in my neck, and years of on again, off again, chemotherapy.

Ok, hopefully that is enough background info.  If anyone can present some advice it would really be appreciated.  Currently I am 44 years old, and have been fighting stage4 colon cancer for 9 years now.  I live in a small town in Oregon and been going to a mid-side hospital where all the doctors and nurses know me by name.  My only cancer at this point is in my retroperitoneal lymph nodes with no signs to other areas, but my oncologist states no surgical option exists for it, and radiation would couse too many other problems to my kidneys etc.  I'm one of those patients whose CEA numbers are historically incredibly accurate, verified by scans.  I'm actually in good health at the moment, except that my CEA numbers are rising quickly despite currently being on oxaliplatin, avastin, and xeloda-- so these drugs appear to be losing there effectiveness.  This was also just verified by another CT scan.  I've also had over 2 and a half years of being on irinotecan and erbitux but that lost its effectivness and my CEA numbers started rising which was why I switched back to oxaliplatin several years ago.  (of note I was accidently precribed erbitux-- as I don't have the right mutation for it-- not that it matters much at this point.)  I'm not a candidate for the new immunotherapy Keyruda because of the genetic features of my tumors.

Ok, so now what?  Exercise always makes me feel better and I went for another 5 mile run this morning.  However, my CEA numbers have been rapidly going up the last three months-- verified by a CT and PET scan.  My CEA went from 9, 35, 76-- and the cancer is still confined to by retroperitonal lymph nodes, and I'm still on, as stated, oxaliplatin, avastin, and xeloda-- but it appears these drugs are no longer working.  I also know how quickly one suddenly goes from living an active life, to suddenly being stuck in a hospital bed ridden.  My doctor states lonsurf is my best option at this point, and I've never been on it.  However, it appears to not work that well, and patients describe tons of side effects.  I'm debating not taking it. 

Honestly everyone, at this point I'm about to sell all my belongings and move to a small Greek island.  I saw a documentary several years ago where someone had terminal cancer and they left to live out a good year and somehow got better from terminal cancer by living in paradise.  I'm really not sure what else to do at this point?  I know that sounds sort of crazy-- but I'm probably going to do that.  Do you think it would make sense to go to a big research hospital like Memorial Sloan?  That would be a major hassle for me to get there and I don't know anybody.  However, I would do it if I thought I would get me better.  Has anyone tried going to Germany, Mexico, China, Thailand, or Japan-- and tried experimental stuff or eastern or traditional therapies?  I already visited a somewhat large hospital in Portland, OR, OHSU, and they were not aware of any trials that would help me or any new drugs I've not already been on.  It was a super depressing appointment-- worse then I was even prepared for.  Has anyone tried a strict vegetable diet, carrot juice diet, or  heavy cannabis use to fight inflammation and cancer?  Ever since diagnosis I've most been on a fruit and vegetable diet with just a bit of protein mostly from seafood.

I'm very open minded at this point.  I really love you all-- the general public has no idea how difficult this disease is, and how strong you all are.  I will try to post more in the future about how I'm doing.  Please stay positive everyone, that is the secret, no matter are difficult your circumstances.  Better treatments are on the horizon.  I really appreciate any advice from anyone.   

 

        

         

Mikenh

I was diagnosed with Stage 3B

I was diagnosed with Stage 3B from a local hospital and was encouraged by coworkers and relatives to go to a major cancer center so I went to Dana Farber Cancer Institute in Boston which is an hour away. The Oncologist and Radiation Oncologist had the same advice as my local doctors. I did choose a surgeon at Brigham and Womens Hospital and she is board certified and very well qualified. I would always suggest a major cancer center for a second opinion, particularly if it's stage 4 as they have the best access to clinical trials.

I would also take a look at Genomic Tumor testing to see if your gene mutation can be treated using specialized chemo drugs or something targeted like TIL therapy (National Cancer Institute trial). It can be a long shot but I've known people that it has helped.

I've always been active as well and my activity levels dropped sharply after surgery and Adjuvant Chemo with XELOX though part of that is a busy work schedule.

It's a very tough choice between quality and quantity of life but you're so young and otherwise healthy that fighting it seems reasonable. There are lots of folks here that are far older and that are also having a tough time and they continune to fight on. I don't know what my pain point would be on giving up but sometimes my Adjuvant Chemo has me thinking about it.

9 years is a long time to be fighting this thing.

I do have one story for you though: a coworker developed lung cancer two years ago and normally it would be a short death sentence but he went to Dana Farber and they took a sample and ran it through NextGen Sequencing to find his gene mutation and they told him that they had a drug for it. He took the drug and it shrunk the tumor but only to a certain point so he kept taking the drug and then there was another mutation after a year but the doctors were expecting it so they had a drug for the second mutation and the first mutation and he's been taking that. It controls the tumor - it's not growing and it's not shrinking and the drug only goes after the tumor cells - not all of the cells in his body so it's lower toxicity than the general chemo that's used in Colorectal Cancer.

But that's Lung Cancer where there are more targeted drugs than there are for CRC.

Update: MSK is a long ways from Oregon and maybe Seattle Cancer Care Alliance/University of Washington Medical Center (Ranked #7) would be easier logistically.

 

I do hope that you find peace in your decision.

blessed39

Stage Four Colon Cancer

Dear 777, I  too was diagnoised with stage four colon cancer and can certainly identify with

what you are experiencing. My story "How I Beat Stage Four Colon Cancer" is on my blog on my

page. I also have a son not unlike you that has run the Ironman a couple of times and trains

constantly. I turned 78 this last December and as you can see, I'm not senile or incompetent. blessed39

tanstaafl

cam, mostly at home

First, you don't absolutely have to travel (much) to get good integrative options.  Working the phones, boards and email can cover a tremendous amount of ground.  Others have left notes too.   We do most of what we need, at home, probably more productively aggressive than most travellers to Germany and Mexico have.  No money arguments, no waiting on insurance, begging insurers etc.   The most important part of plan has been to keep adequate chemistry on distant lymph nodes and mets to prevent their further spread and try to pick them off over time, either physically interventional or varied immuochemo.

Second, from where I sit, I'm not convinced you've exhausted your Xeloda options.  You need to re-sensitize the cells to a 5FU based regime.  We've done it a number of times with "unimpressive" materials added - mild generic  drugs and specialized, heavy duty supplements.  Most available in US or China...

Third, you need support from at least one person you can trust.  I'd stay closer to family and friends. Right now you may need medical help that will help you pursue your agenda, not theirs or someone's interference.   It's nice if you have open access to a good hospital.   We do this both conventionally, and less conventionally.    To me, international travel to new climes is to get medical care unavailable either due to cost, or surgical rarity (we're overseas).  I would be wary of romantic adventures with serious disease at this moment in time; earlier exploration might have been usefulfor that.

  

debugy2k

My mom has stage 4 colon mets

My mom has stage 4 colon mets liver since 2015.  Been on a few different chemo meds and even visited Memorial Sloan (Bad experience for us).  So settled back at our local hospital.  She's on Lonsurf pills now.  It's a fairly new chemo med that's made in Japan.  She just did one cycle of it and so far no real side effects.  Maybe you can ask your oncologist about it?

JanJan63

Welcome to the board. It's

Welcome to the board. It's really unfortunate that you're not a candidate for the immunotherapy drugs but there's got to be something that will work. I don't know if going on something else and taking a break from the chemos you're on will make them work better if you try them again in the future, maybe that's an option? 

I hope you're able to find something that helps. A good diet and being active certainly helps. As far as alternative therapies, I'm not a fan of wasting money on things that don't work but maybe there is something out there that helps? And any alternative therapies should only be done in conjunction with traditional therapies.

Take care,

Jan

plsletitrain

Quality of life

Optimist, I think what you have undergone is already enough to call it a victorious feat.  You've been through so much and its understable when it just takes a toll on us.  I have only undergone a small portion of what you went through and even I sometimes question where is all these leading to.  I tell myself only God knows what's gonna happen to me.  What I do is I try everything I can to prolong my life.  I did and still do chemo but I'm putting a limit on it.  So far I'm still tolerant of it so I manage.  I also try to eat healthy although I still cheat and eat what I consider no-no foods from time to time.  I found carrot juice somewhat helped me but I don't have any scientific evidence to back it up as I merged it with chemo and chinese herbs.  

I hope you find peace in whatever decision you make.   After all, it is our lives and we choose how we run it.    Whenever I am faced with a decision-making (and cancer is one tough area, its our lives that's at stake), I just ask for divine guidance.  If you're not a believer,  you have your mind and heart to tell you what to do.  Follow your intuition.  You know what's best for you.

optimist777

I'm doing well

Hi Everyone, just thought I'd give some good news.  Basically by oncologists told me I had less then three months to live if I did nothing, and refused to find a trial somewhere in the country as a last hope.  I was just so exhaused with hospitals and treatments, I decided to just enjoy life to the fullest with the time I had left and decided on no treatments whatsoever.  Sold all my belongings, brought my golden retriever, and moved to Hawaii.  To my amazement I have been getting stronger and pain has continued to decrease on a monthly basis.  What I have been doing is long walks on the beach, getting lots of sunshine, but not too much.  I eat mostly fruits and vegetables, but some fresh meat, mostly seafood.  I do my best to avoid sugary foods and carbs.  I try to drink a lot of coffee in the morning and try to avoid alcohol.  I have not used marijuana, although I may in the future to see if it possibly helps with tumor shrinkage.  I am very glad with the decision I made.

I am a big believer in chemotherapy and surgery in the first year after diagnosis, but if it fails and the cancer returns, don't be afraid to question your doctors, and think independently.  We are are different, but I just wanted everyone to know that positive developments are possible, even with stage4.  I really am starting to think I can now get into a long-term remission.  I will keep you all posted, and wish all of you the best.   

Ruthmomto4

optimist777 said:

I'm doing well

Hi Everyone, just thought I'd give some good news.  Basically by oncologists told me I had less then three months to live if I did nothing, and refused to find a trial somewhere in the country as a last hope.  I was just so exhaused with hospitals and treatments, I decided to just enjoy life to the fullest with the time I had left and decided on no treatments whatsoever.  Sold all my belongings, brought my golden retriever, and moved to Hawaii.  To my amazement I have been getting stronger and pain has continued to decrease on a monthly basis.  What I have been doing is long walks on the beach, getting lots of sunshine, but not too much.  I eat mostly fruits and vegetables, but some fresh meat, mostly seafood.  I do my best to avoid sugary foods and carbs.  I try to drink a lot of coffee in the morning and try to avoid alcohol.  I have not used marijuana, although I may in the future to see if it possibly helps with tumor shrinkage.  I am very glad with the decision I made.

I am a big believer in chemotherapy and surgery in the first year after diagnosis, but if it fails and the cancer returns, don't be afraid to question your doctors, and think independently.  We are are different, but I just wanted everyone to know that positive developments are possible, even with stage4.  I really am starting to think I can now get into a long-term remission.  I will keep you all posted, and wish all of you the best.   

This amazing

and wonderful news, I am so very happy for you. I hope you continue to feel good for a VERY long time!

BRHMichigan

optimist777 said:

I'm doing well

Hi Everyone, just thought I'd give some good news.  Basically by oncologists told me I had less then three months to live if I did nothing, and refused to find a trial somewhere in the country as a last hope.  I was just so exhaused with hospitals and treatments, I decided to just enjoy life to the fullest with the time I had left and decided on no treatments whatsoever.  Sold all my belongings, brought my golden retriever, and moved to Hawaii.  To my amazement I have been getting stronger and pain has continued to decrease on a monthly basis.  What I have been doing is long walks on the beach, getting lots of sunshine, but not too much.  I eat mostly fruits and vegetables, but some fresh meat, mostly seafood.  I do my best to avoid sugary foods and carbs.  I try to drink a lot of coffee in the morning and try to avoid alcohol.  I have not used marijuana, although I may in the future to see if it possibly helps with tumor shrinkage.  I am very glad with the decision I made.

I am a big believer in chemotherapy and surgery in the first year after diagnosis, but if it fails and the cancer returns, don't be afraid to question your doctors, and think independently.  We are are different, but I just wanted everyone to know that positive developments are possible, even with stage4.  I really am starting to think I can now get into a long-term remission.  I will keep you all posted, and wish all of you the best.   

Great!

Good for you for following your heart and gut. I hope and pray it continues to work for you. Have you read Radical Remission? It's about everyday people surviving cancer in remarkable ways, by radically changing various aspects of their lives.

I may be faced with a similar decision soon. Am very encouraged by your story.  Please keep us posted. ALOHA

Ruthmomto4

BRHMichigan said:

Great!

Good for you for following your heart and gut. I hope and pray it continues to work for you. Have you read Radical Remission? It's about everyday people surviving cancer in remarkable ways, by radically changing various aspects of their lives.

I may be faced with a similar decision soon. Am very encouraged by your story.  Please keep us posted. ALOHA

Beth

i hope that you are doing ok, I think of you often.