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A few questions about chemo options, IORT and HIPEC

amy_4314
Posts: 7
Joined: Apr 2011

Hi,

I have a few questions to ask on behalf of my friend who has a large tumor pressing on his intestines and embedded in his abdominal tissue as well as some cancer in his peritoneal lining. He is being treated in Boston and had surgery back in Dec, but they were unable to remove the tumor. He has been on a combo of irronotecan and oxaliplatin since the beginning of March. The irrinotecan and oxaliplatin are keeping the cancer stable, but is not shrinking his tumor. Also, I think it is really tough chemo regiment.

My friend is not on 5-FU because it gave him heart difficulties 5 years ago when it was administered after his first bout with cancer that was surgically removed.

My friend just returned from a second opinion at Sloan. The Sloan doctor thinks that he can go back on the 5-fu, but that it should be done under hospital supervision for the first go around to make sure there are no problems.

We have sent his medical records to several surgeons for their opinions. The Boston doctor who attempted the surgery back in December says he is not a surgical candidate for the tumor removal. The Sloan surgeon also said he is not a surgical candidate. The Pittsburgh HIPEC doctor said that he will review his case in August after my friend is done with chemo. The Baltimore HIPEC doctor is potentially interested in his case, but my friend hasn't followed up with him yet. My friend is suspicious about the Baltimore doctor since all of the other doctors have said no.

Anyways, right now, it seems according to his doctors. that the tumor that is pressing on his intestines is more immediately problematic then the cancer in the peritoneal lining.

My questions are as follows:
1. My friend's Boston doctor wants to continue with the Irrinotecan and Oxaliplatin until the chemo cycle is done at the end of August. My thought is that since the Sloan doctor says it is ok to proceed with the 5-fu, should my friend switch to the 5-fu or stay the current course? Is there any reason for not switching now and waiting till August? Wouldn't the 5-fu be a better option since it is typically part of the 1st line regiment. What I am hoping is that we can shrink the tumor and make him a better surgical candidate.

2. I read about IORT - intraoperative radiation therapy. According to the Mayo clinic "IORT is used for cancer that cannot be cured with surgery alone and for tumors that are either attached or close to vital tissues" which sounds like my friend's case. Is IORT a tool that is available at most hospitals or is it a specialty that we should research. Are there any hospitals that offer IORT and HIPEC? I just don't know if IORT is part of standard treatment or not. Any thoughts?

Thanks,

Amy

menang
Posts: 35
Joined: May 2011

I am new to this board and my brother was just diagnosed on Monday. That being said, I have been researching everything - I assume your friend lives in the NE US and I know that Roswell Park Cancer Institute in Buffalo offers both of these procedures, and my understanding is that these are specialty treatments not offered at every hospital. Their website is www.roswellpark.org. My brother is being transferred there today, so we are hoping that he is a candidate for these types of procedures as well. I also fear that he wouldn't be a candidate for the debulking, so maybe we can go the route of IORT first (if that's an option). I'll keep you posted and let you know what the doctors say, since it sounds like our situations may be similar.

In the meantime, best wishes to your friend -

Maria

amy_4314
Posts: 7
Joined: Apr 2011

Hi Maria,

Thanks so much for your response. We are located in Boston. Did your oncologist suggest IORT? I sort of stumbled upon it after much incessant googling about colon cancer and I am not even sure it is applicable to my friends case. He has an "inoperable" tumor pressing on his intestines, that is embedded in his abdominal tissue along with some cancer in the peritoneal. He is in the process of contacting HIPEC surgeons, although no one seems too excited at the opportunity to perform surgery on my friend. Maybe we should send his records to Roswell if they perform both IORT and HIPEC. Do you happen to know what other hospitals might offer both? I hope you keep in touch, I would be interested in knowing what Roswell says about your brother's case.

Thanks,

Amy

menang
Posts: 35
Joined: May 2011

It seems that my brother's case is not a candidate at this time, because the tumor is "frozen" in his abdomen and too extensive. We just didn't catch this in time. If you go to Roswell's website, there is a link to "become a patient". Dr. Fakih is head of gastrointestinal medicaly oncology there, so I would see if you can get an appointment there. I, unfortunately wasn't there when the doc came in, so my one million questions weren't answered. I'll keep you posted on my brother. Keep positive and let me know how it goes for you and your friend. It really does have some promising results.

Maria

amy_4314
Posts: 7
Joined: Apr 2011

Hi Maria,

Sorry your brother is not a candidate for surgery right now. One thing I have learned through this whole awful ordeal is that it is really important to get an opinion from more than one doctor. I don't know if the surgeon at Roswell is the only one you have spoken to, but it is possible that another surgeon might have a more aggressive approach. My friend is unfortunately really stubborn and I am still trying to convince him of the value of getting a second opinion on HIPEC surgery. Anyway, I posted this same question on another colon cancer list serv that is moderated and got some interesting feedback regarding IORT and HIPEC. Just quoting, the moderator said that "Radiation, especially intraoperative would probably result in denial of HIPEC since radiation causes cellular changes making future direct chemo difficult to tolerate. Patients who have had radiation often do poorly after HIPEC surgery so they don't usually like to do HIPEC in patients who have had radiation to the intestines." Just thought that might be helpful as you try to figure out a path forward for your brother. Keep in touch and stay strong.

Amy

menang
Posts: 35
Joined: May 2011

We are bringing Mike home tomorrow, since they have his pain under control, he is eating again, and his strength is back. We will meet with the medical onc next week and see what he has to say. If they say "nothing", then we will certainly do a second opinion. Thanks for the heads up on radiation - that is a good thing to know.

I'll keep you posted on what we find out. And "stay strong" is my motto right now!

Maria

LivinginNH's picture
LivinginNH
Posts: 1260
Joined: Apr 2010

Hi Amy,

I sent you an e-mail (Log in and click on the highlighted Private Message note at the top of the screen) - Cynthia

traci43's picture
traci43
Posts: 411
Joined: Jul 2007

Amy - Sorry to hear about your friend's situation. I had HIPEC two years ago and did very well but my tumors came back. I talked to lots of HIPEC doctors and really liked the Dr. at St. Agnes (Baltimore) and even though I did not go to him for surgery, I still keep in contact with him for advice (His nurse/assistant is great too!). HIPEC is tough, no doubt. I was in the hospital for 10 days, but by day 7 I was ready to go home. The first few days are rough since you get so much anesthesia (10+ hour surgery) and they pump you full of liquid to flush the chemo out. I had a tunnel epidural which left me pain free and really helped to get me moving. They took it out day 7 and I never required pain meds after!

The one thing I learned is that after you have HIPEC, if you need surgery again it's best to go with a HIPEC doctor as your organs get sticky. My surgeon said he'd send me to a UCSD HIPEC doctor (my HMO contracts with him for this procedure) if I need surgery again. Right now I'm trying chemo and diet/supplements to control the beast.

If your friend decides to go this route (HIPEC) and wants more info, just ask. Traci

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