Any Help would be great! - Just diagnosed with Isolated Unresectable Colorectal Liver Metastases

Hi smb, glad to hear that you

Hi smb, glad to hear that you are seriously looking into HAI.  Based on what I know, it is the first thing I would recommend looking into for CRC patients with solely-or-mostly liver-limited metastases.  As I often say, I wouldn't be here now without it.  As for NYC or Pitt, I have to say I know nothing about the results or expertise of Pitt specialists when it comes to HAI, but MSK was/is the pioneer in HAI, and they are also the #1 cancer hospital in the US (or at least top 2), so I might lean in that direction.  I have heard that the effectiveness and complications (or lack thereof) for HAI are highly correlated with the amount of HAI experience that a given hospital / set of doctors has.  Dr. Kemeny is the name you'll usually hear for MSK HAI, but I have another oncologist at MSK who has done a fantastic job for me, and since I know they are a very collaborative hospital, I think any onc there would have access to similar treatment and expertise.  

Please don't hesitate to shoot me a PM if I can answer specific questions, but here are a few scattershot thoughts-

I'm told that HAI tends to work even better as a first-line treatment, though it still has a very good response rate even as second-line.  In my case, I started FOLFOX plus Avastin as first line with my local onc, and didn't hear about HAI until a month or 2 later.  By that time, when I contacted MSK, they wanted to wait until I had finished my first-line (12) txs before they assessed my status.  Turns out that I had an unbelievable response to 1st-line.  At dx over half my liver was cancerous, plus a couple lymph nodes.  The first 12 txs brought down my tumor burden (and CEA) by well over 95%.  So I went to MSK, had my colon resected, 2 lymph node mets taken out, and HAI pump installed.  We then switched to systemic FOLFIRI every 2 weeks, plus HAI FUDR chemo (essentially, 5-FU) doing a slow drip into my liver for 2 wks, then did another cycle FOLFIRI when I drained my pump for 2 weeks off FUDR.  

HAI can be very intense on your liver, and often folks have to drop or reduce it due to liver toxicity (as often shown by labs).  Which makes sense, since I believe it's essentially giving 15x the dosage of chemo directly to your liver than your liver would get via systemic alone.  But they will keep close tabs on it, and reduce dosage as necessary.  

I live about 4 hours from NYC, so I was lucky in that my local oncologist's office was trained on how to drain the pump (and refill with saline) every 2 weeks, at which time they'd also hit me with a FOLFIRI tx.  Bottom line, this allowed me to generally only make one trip to NYC per month during tx, instead of 2.  However, I suspect you would either have to travel back to NY once a month, or else find an onc closer to home to refill the HAI every 4 weeks at the very least.  Not sure how long an NYC or Pitt onc might want to keep you around for observation after HAI.  I was in the hospital about 10 days, was able to get systemic a couple weeks after install I seem to recall, but had to wait another couple weeks for them to do my first joint HAI and systemic chemo.

As for side effects and being that far away from NYC, if you can work with a local onc I imagine they can handle most emergencies that may arise.  To be quite honest, I felt absolutely no difference whatsover between when I had chemo pumping into me via HAI, vs those weeks I only had saline.  FOLFOX, on the other hand - and especially the Oxaliplatin component - can mess up your day quite a bit if you get hit with side effects.  But an onc closer to you could probably help with most emergency situations related to that.  Incidentally, IMHO the incremental benefits of additional Oxi txs after say the 8th or 10th vs. the possibility of long-term or permanent neuropathy (of which I have a tiny amount) may be worth being conservative about in some cases.

Anyway, sorry for the haphazard dump of info, but glad to see you are taking charge of educating yourself about your options, it seems that altogether too many people don't.  It's probably pretty trite, but I'd say I owe much of my success to '4 E's' - educating myself about the dx, making sure I'm emotionally in a good place to deal with things (i.e. supportive, non-stress environment), exercising as much as possible through it all, and eating a little better than I had been (plus looking into some possible evidence-based supplementals, herbs and vitamins...).  Plus there's always the grace of a higher power and/or good luck.  Either way, I hope you get extraordinary results, and feel free to contact me.  Wish I had more insight on your pain, but that's something I'm sure your medical team will be able to help get to the bottom of, hopefully sooner than later.

-Chip

 

 

 

 

 

D3; others

Might want to check your vitamin D status (blod test).  Many with advanced colorectal cancer are SEVERELY defficient in vitamin D.   Many here have required 5000 - 10,000 iu D3 per day.   My wife took 17,000 iu for some months and then 12000 for some months and still wasn't quite adequate.   Back pain is one possible symptom.

There are many causes of back pain.  My wife takes a number of nutrients, including the glucosamine, chondroitin, MSM, fish ouil combos with large scale C, D and K2 but she no longer has the back pains of years and years.     These type formulas have also worked wonders for me too on knee arthritis and severe back strains. 

Life Extension Foundation's articles and protocols on cancer, colon cancer and surgery have been a good starting point for us.     

 

In 2007 I was diagnosed with

In 2007 I was diagnosed with stage 4 colorectal cancer with metastesis to the liver. My children were 9,11,13, and 15 at the time. I did chemo,radiation. and a liver resection. One and 1/2 years later,I had a single tumor recurrence and had no further treatment . I am alive and well today. I swam any chance I could and like you wanted to be as present to my children as I was before. Stay strong and believe .