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[jalusa]

My wife and I rented a small place in Manhattan half way between the hospital and out patient clinic. This was for my colon resection and pump placement. We ended up staying for 6 weeks due to a few complications.

We spent almost 6000.00.

I don't know what it would cost elsewhere but it sure was convenient to be able to walk to either place.

[mariane]

Jim, did you have complication with pump or primary resection?
How did you survived FOLFOXIRI? Why did you stop after 4 rounds?

[jalusa]

I had a leak where the line from the pump entered the liver. They fixed it. I don't think it is very common.

Systemic chemo didn't do much for me. No shrinkage of mets. Folfoxiri was hard.

I have had 10% shrinkage so far with the HAI.

[mariane]

benefits of FOLFOXIRI
http://meetinglibrary.asco.org/content/139989-158

[mariane]

I understand. It is tough chemo. I was chemo naive so it was probably one of the reasons I responded well to it.
Did you have primary tested for the mutations? I am sure they did it in MSK. Mutations can predict chemo response.
I signed agreement on my last visit at MSK for extended genetic tests, comparing my healthy tissue and tumor tissue.

Leaking scares me D'A said they have 0.1% of complications.. I have funny anatomy so my pump will not be a standard one.

[jalusa]

I am KRAS mutant.

My early treatments were at Mayo. When they sent me home I went to MSK.

[mariane]

There are more basic mutations to check - they usually check KRAS, NRAS, BRAF and PIK3CA. The more the better. I think the tailored therapy is what we should pursue from the very beginning. Check, please what Dr K requested.
She checked my MSS/ MSI status as first test when I entered MSK. CARIS did not have enough healthy tissue to compare.

[mariane]

Article which brought me to Dr K, very encouraging. I wonder whose story it is.... but it has a happy ending.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4397241/

[Maggie Nell]

http://newccboard.colonclub.com/viewtopic.php?t=2140

The above is an earlier thread started in 2007 titled
HAI pump at Sloan-Kettering w/ Dr. Kemeny??? that goes through to 2011.
The discussion might cover some of the questions you have.

Kemeny is tough. She's a scientist in a doctor's coat. But she fights like a tigress for her patients,

[mom_2_3]

Mariane,

Just a quick note to you that I also had a number (5) of liver lesions when I was diagnosed in 2008. After 4 treatments of FOLFOX I had 40% shrinkage and we scheduled a liver resection, colon resection and HAI placement. My surgical team was Dr. Paty and Dr. D'Angelica. My oncologist is the incomparable Dr. Kemeny. Since my resection in February 2009 I have remained NED and I am so grateful for the amazing care I received at MSK. I feel fortunate and blessed beyond words to be treated at that facility. Lucky for me I live relatively local (NJ) but others I have met from other states are able to stay at Hope Lodge free of charge. Please Google that facility as they may be able to help you with your housing requirements.

My surgery was a bit different than yours will be as I had a full incision (top to bottom so to speak) and had 40% of my liver removed. I was sore and tired for about 6 weeks while my liver re-generated. After that time, however, I was able to manage pretty well my daily chores and life. There are lifting restrictions with the HAI pump so be aware. Additionally, Dr. Kemeny is not a fan of running so if you are into that, ask Dr. D'A to put in some extra stitches and get yourself a hernia belt for when you do run. I like to do hot yoga and the only thing challenging for me about my pump is Locust pose.

Treatments through the HAI were hardly noticeable (that is, I didn't have any type of reaction as I did systemic chemo). I still have the HAI pump although I have not had any treatments since November 2009. I kept it in those early years as an insurance policy in case I needed to use it again. Once I hit 5 years I planned to get it out but some other things have gotten in the way of having the procedure done. I think I will have it removed in November sometime but would like to lose 5 lbs before I see Dr. D'A....

You are in GREAT hands (sorry for shouting but I feel that strongly about MSK) and if you would like to chat ever, let me know via email.

All the best to you Mariane,
Amy

[Nik Colon]

Nik Colon, the pain after liver surgery sounds scary.... Anyway I have no choice.

I would ask about the pain prior as I mentioned they can do an epidural too. If I would have known prior I may have asked for the epi, but I pulled through it. The thing that helped the most after all the pain meds (fentynal, dilaudid, etc) was finally torodol, but I think they use caution with it from what I remember reading, I think they prefer not to after surgery because of bleeding or something. Anyway, it's managable pain even if not pleasant, as I said, with me it was more because I couldn't take a deep breath so that really freaked me out, but I would talk to them before hand so you know for sure.
Also, you may have a burning sensation under the liver incision a few weeks after which is normal which is internal healing possibly from stitches inside.

Best wishes

[jalusa]

I am seeing Dr. Cercek. She follows the same protocol. I am on FUDR in the pump and systemic folfiri. I am not a fan of iranotican.

[jalusa]

I wonder about my folfirinox treatment. They scanned after 4 rounds and said it really did very little. Is 4 rounds enough? After that I was off chemo for almost 3 months due to surgery and saw very little change. Maybe the folfirinox helped.

[mariane]

Jim,
I am not fun of Irinotecan , either. I hate it. It is part of FolfoxIRI and FolfIRI as well. The only thing is that it is safer for perpheral nerves than Oxaliplatin. I am concern about permanent neuropathy. As for now, my neuropathy keeps going away after 2-4 days after the treatment but... I am afraid one day it stays.
There was large European study of FOLFOXIRI with bevacizumab (TRIBE). It showed increased survival and resection rate. 80% patients included in this study had extra liver disease. They were not eligible for surgical treatment still almost 25% patients survived 5 years. Impressive. Bevacizumab is toxic for the liver so it is not included if HAI pump placement planned. Altogether FOLFOXIRI is more toxic than either FOLFIRI or FOLFOX alone so it is recommended to do just 3-4 cycles before liver surgery and discontinue if curative surgery is possible. If surgical treatment is not possible FOLFOXIRI with bevacizumab for otherwise relatively healthy patients (toxicity) is the best option until now and recommended to continue for 12 cycles.

""The estimated 5-years OS rate of patients treated with FOLFOXIRI/bevacizumab was equal to 24.9%, with an absolute benefit of 12.5% compared to controls."

http://www.esmo.org/Oncology-News/First ... tal-Cancer

Amy,

Thank you very much for your response. It is so uplifting. Of course, I want to talk to you! I will send you a priv.

Thank you, Maggie Nell and Nik colon!

[KWT]

Marianne, bevacizumab (Avastin) can most definitely be used with both kras wild and mutant tumors.