stage4 colorectal -- advice welcomed

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.

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.

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

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.   

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