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

smb245

Hi! Can I first say how grateful I have been to have found this site and the hope it has given me.  It has felt like hope has been in short supply!

2 part question

Part 1:  I was diagnosed a week ago with stage IV colorectal cancer with unresectable liver metastases.  I am having a colonscopy on Monday to confirm source and likely a PET Scan early next week to confirm it hasn't spread further.  I live in Tucson and will be meeting with an oncologist (have only met with a surgical oncologist so far) at the cancer center here on Tuesday for treatment options.  I have been strongly encouraged by my surgeon to look into HAI (Hepatic Arterial Infusion) at either Sloan Kettering in New York or through a hospital in Pittsburgh (his choice is Pittsburgh as that is where he trained).  Although I have a lot of tumors (more than 10) at least half of them are currently still small. The others are larger but apparently not out of range of possible shrinkage to hopefully become a surgical candidate.  I am 46 years old and my liver is till functioning fairly well.  As I am chemo niave at this point - my oncologist surgeon feels like this may be the best course of action for possible rescetablity in the future. 

We have done a lot of research on this approach but still feel a little unsure and wondering if anyone in this forum can give any insight with their experience with or without HAI.  I have an incredible support system, so if regular travel became necessary that would be doable. 

Part 2: - I am having a lot of back pain, doctors unsure why.  In addition, I am having a very hard time sleeping and eating is become increasingly more difficult because of the pain associated with eating (eating makes back pain worse).  I am down about 27 pounds in just a few months.  I have started swimming every morning to try to build up energy but I am finding it increasingly more difficult to function at the level I really need to be able to.  I have an 11 year old and 3 year old.  I do not want to allow this disease to define me or take away my strength and ability to find joy in my days but it feels increasingly more difficult to get my body to cooperate.  Any help and suggestions would be great.  My surgeon has told me to drink as many portein shakes as possible a day and to not worry too much about the rest of diet at this point.

Thank you in advance for any and all help you can offer! 

gfpiv

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

 

 

 

 

 

Trubrit

Welcome (again) - MY SINCERE APOLOGIES

EDIT: For some reason I was thinking HIPEC and not HAI.  Two very different procedures. (as in VERY)

My advice is still the same though. Be good to yourself. Again, I apologise.   SUE

- I posted to your other reply before seeing this -

I really am sorry that you find yourself in this postition. And with two young children, it breaks my heart. I wish it would just happen to us oldies, who've had good lives. 

HAI can be quite brutal, but effective. As I said in the other post, be really good to yourself as you revover. Pull in all of the people who can help you with your children. True, you don't want to let Cancer define you, but you have it, so run with it.  Make use of those around you, and get yourself recovered and ready for what lay ahead. 

Be careful with swimming. I would worry about water and infection. It is a good overall exercise, and so is walking.  FInd what works, always passing it by your Oncologist. 

I do so hope the back pain isn't related to any tumours. Those little buggers can push on nerves, and cause pain. I'm sure the scans you will be having, will shed some light on it. 

We are here for you. Its going to be a rough journey right out of the gate. Be good to yourself. 

SUE

tanstaafl

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.     

 

mom_2_3

HAI here too...

SMB, 

Like Chip, I was treated at MSK (Dr. Nancy Kemeny) and had an HAI pump implanted in 2009.  The summary of my experience was that when diagnosed (during a c-section) I had 5 liver tumors across my liver (largest being 5 cm).  A local oncologist and surgical oncologist were not hopeful as to the outcome of my prognosis and my husband's cousin secured us an appt with Dr. Kemeny (the cousin is a GI doctor and acquaintance of hers).  My course of treatment was to do 4 FOLFOX treatments.  After those treatments (about 2 months) I was scanned and my tumors all shrunk by 40% (I actually had the scans myself on disc and compared them and told my husband prior to my appt that there was a 40% decrease in size and he didn't believe me...).  At that scan appointment I was informed I was already scheduled for surgery Feb 2009 (11 days later).  I had my chemo for that day and then began pre-surgical testing.  

On Feb 20, 2009 I had the first surgeon (Dr. Michael D'Angelica) resect one entire lobe of my liver and then do 2 wedge resections on the other two tumors that were on the other lobe.  Additionally, he placed an HAI pump.  After his "part" was finished the second surgeon (Dr. Philip Paty) came in and removed 12 inches of my colon.  I spent the next 8 days in the hospital.  After my surgery I continued to receive systemic chemotherapy as well as HAI infusions (FUDR) until November 2009.  At that point I ceased all treatments and have not had any chemo since.  I have been in remission for almost 7 1/2 years.  

To your specific question, the HAI can be used pre-surgery to reduce tumor burden in order to make one eligible for resection.  I have two friends I met via MSK that were both inoperable and with heavy tumor burden.  Both were able to become resectable via the HAI pump.  Comparing MSK and Pitt, I don't know whether one would be any more convenient for you to travel to/from but I have to say that MSK is a phenomenal place and I feel so blessed that I was able to receive my care there.  I cannot recommend it more highly.  

Here is a link to a video of Dr. Kemeny discussing the HAI pump.  https://www.mskcc.org/videos/treating-liver-metastases-hepatic-arterial-infusion-therapy

 

Chip did mention that HAI can do a number on the liver (can elevate your liver enzymes dramatically) but Dr. Kemeny can manage treatment very well to ensure that you receive maximum dosage without destroying the liver.  From a treatment perspective, however, the HAI pump treatments were a breeze.  There were no side effects those weeks I received the chemo directly through my pump. 

Please PM if you have additional questions.

Amy

mamaharp

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 .