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Scan results good - at a crossroad UPDATE

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Folks,
I'm at crossroad in my treatment. Recap - DX July '09 with rectal. 15 liver mets and "activity" in the peritoneal lining. Primary not resected and no radiation. Colostomy to avoid emergency situation of complete blockage of the rectum. I have finished the initial plan of 12 treatments of FOLFOX and Avastin. Scan this week was good. Not a home run, but good. Nothing new, with an overall shrinkage of about 40%.
The consensus of the doctors here at Wake Forest is to do more chemo with the goal of extending my life for another 2 years or so. However, the vote was not unanimous, and the surgeon -Dr. Perry Shen - is meeting with us today at 1:30. Dr. Shen and his team specialize in Cytoreductive surgery and Hyperthermic Intraperitoneal Chemotherapy, and he wants to discuss this option. The surgery basically consists of scraping the peritoneal lining, removing anything that looks bad and bathing the whole cavity in warm chemo. MMMM Warm chemo - that sounds awesome. I believe it is the same as, or similar to HIPEC. I'm giving you the terms that Wake Forest uses. Dr. Shen has a reputation of being aggressive. I like that.

I'm going to Sloan next week for a 2nd opinion and then to MD Anderson for a 3rd.

I'll post tonight to let you know what Dr. Shen has to say. I've been researching, but it's all so confusing as usual. Who out there has had HIPEC?

Roger

UPDATE:
I had a great meeting with Dr. Shen today. He is a pretty aggressive guy. Very aggressive when it came to trying to feel the rectal tumor. My butt is still sore.
HIPEC is the traditional European label. Wake Forest uses their own term out of stubbornness, but there is no difference.

Dr. Shen is pretty sure that I am a good candidate for surgery. He wants me to have a PET scan and another MRI. The scan results will give more information to base the decision on and hopefully decrease the number of surprises he will find when he cuts me open. At this point the plan for surgery will be:
1. Resect the liver - There are 3 large spots that show up on the CT scan. Where did the other 12 little spots go? Perhaps the Oxy sent them to He11 where they belong. Perhaps the MRI will show them. Perhaps they're too small to image and they'll come back. Don't really know.
2. HIPEC - remove all visible cancer from the peritoneal lining followed by warm chemo bath.
3. Resect primary rectal tumor. Take down colostomy (good bye Stewie). Rebuild rectum. Create Illeostomy.
This is all in one surgery. That's a pretty big surgery don't you think? Anyone had this much stuff done at once? I think I would be freaking out a little bit if I weren't so tired.

Take care everyone. Know that you are all much loved. Sparks of happiness and hope to you all.
Roger

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Roger,

I haven't had experience with HIPEC, but I wanted to let you know I am thinking of you + will be interested to hear what option you choose. I also have not had my primary cancer or my liver resected. I am currently am on Folfiri + Avastin. I had radiation w/folfox prior to starting the folfiri + avastin. The radiation reduced the primary tumours but the folfox apparently didn't work on the liver tumours (4); they actually weren't even sure these were mets until after I had the radiation + original chemo done. The folfiri + avastin apparently is working, however, to the point where they couldn't detect the primaries on the scan (3 of the 4 tumours on my liver shrunk too + the other did not grow). I think you have a number of options, so getting 2nd + 3rd opinions is a great idea. Best wishes for success!

mom_2_3
Posts: 965
Joined: Nov 2008

Roger,

Sounds like good news from your scan. I think a couple on this board have had HIPEC but I don't see them frequent here as much. You may want to go to the colonclub.com support board and search for HIPEC over there. One poster just reached his 18 clean scan after having 2 HIPEC surgeries.

Good luck with your appointment today. Does the DRs plan for HIPEC include a liver resection as well?

Have a good trip to NYC next week. Hopefully you will have missed the snow...

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Don't they actually refer to it as IPHC? I just had this exact procedure done at Baptist in May of 2009. I saw Dr. Shen over the time I was in the hospital, but Dr. Levine's team is the one that headed my procedure. I have to say I liked Dr. Shen more than Dr. Levine by the time everything was over and done. The procedure itself is rough, so be prepared. It's very hard on the body, but many people make it through with minimal trouble. I had portions of my rectum, diaphragm, small intestine, bladder, liver, the rest of my omentum and the entire gall bladder removed during the cytoreductive portion of my procedure.
Be very watchful for signs of infection and slow healing (the chemo wash will slow healing to some extent anyhow). You will probably have JP drains in when you leave the hospital, that's fairly common and easily managed. There are people who have extended their lives by 5 years and more with this procedure, so it's definitely worth the effort! Let us know what you decide.
mary

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

No experience here with HIPEC but have read up on it. Motherload of surgeries but many people have it. Like Mom 2-3 said, go over to the colon club, people there have had it. If you are at a point where they can do this surgery, I say, only my opinion, go for it. You are young and have a particulary good attitude and that will go a long way. Will they be working on the liver at the same time? If I can find the particular post/person I am looking for on HIPEC, I will pm it to you. Take care - Tina

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

The task ahead of you is never as great as the power behind you!!!!!!

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Wow, I am not sure what to say......you seem to be in a similar boat as my sister, doctors that are not talking cure but pallative treatment. I have heard and researched many many studies about this and if you are given the green light, I can only say go for it. My friend's mother just had it done, and she was in the hospital for 12 days and had a colostomy which they will reverse at the end of next month. I have heard the recovery is very slow and it is the MOA of surgeries. At the same time, it offers you a chance for NED. Contact jenhopesandprays on this board. She had it done and is a big proponent of it. Fight on. Marie

Brenda3.16
Posts: 211
Joined: May 2009

Roger,

I am happy to hear that you have found a Doctor that is exploring surgery. I was DX in March 09. Stage 4 mets to liver and lungs. Good response to Folfox. Now on Xeloda and just added Avastin. Doctors still saying surgery is not an option. I went to Sloan and U of Penn. Looking for another opinion currently at another big facility. I am not sure where yet.

Where is Dr. Shen located ?

It sounds like you have some great options.

Do you live close to Sloan or MD Anderson ? I live about 2 1/2 hours from NY and 2 1/2 from Philadephia in rural NE PA. I am wondering what people do when they go somewhere really far away for an opinion. Do you send records and have Dr review them before you go or do you just go there and take the chance they may not have anything different to offer ?

Good Luck . I will be interested to hear of your progress.

Brenda

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Brenda. Dr, Shen is at Baptist Hospital Wake Forest School of Medicine in Winston-Salem NC. I live right outside W-S and have always felt very fortunate to have such a good cancer center so close. My Onc is Dr. Aklilu. Let me know if you want to consider another opinion at Wake Forest. I'll do everything I can to help. Dr. Shen has done many liver resections. He also does lungs. I think he does anything that has cancer. He successfully operated on my friend's lungs in '08.

I read that you are a teacher and have continued to teach. That's awesome. What do you teach? I'm also a teacher, elementary, but I've been out of the classroom for several years. I was supposed to teach this year, but I just couldn't do it. I got my diagnosis and my contract in the same week.

Kim has been great. She has taken care of all the records arrangements. She scheduled the appointment, had all of my records sent, overnighted a hard copy of my most recent scans this week, and got a really good deal on plane tickets and hotel in NYC. There is a "gate keeper" process at most hospitals. Call early. Everywhere worth going is busy.

For me, I know that Sloan does not do HIPEC and MD Anderson does very little. Both of those places send patients to Wake Forest. At this point I don't think we will get much out of the 2nd opinion, but I'm very interested in talking to another doctor at another center to get information that might help me make the decision. This could have taken place over the phone but face to face is always better - but more expensive. We've had the NYC trip booked for a while and can't get a refund. So Kim and I are going to go to NYC and have as much fun as possible. I've been trying to get KIm up there for a romantic get away for years, but we haven't taken the time. This isn't exactly the circumstances I envisioned, but we're determined to have fun. I doubt we will go to MD Anderson. Anderson may be right for you, but I'm not sure it's worth the $ for me at this point.

Take care Brenda. Sending you sparks all the time.

Roger

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and I also think that he mentioned that he is going to have it cremated some day as well....also Roger, it doesn't matter how much they have to do be it 1 hr or 10 hrs , it will all seem the same when you wake up in recovery, and to do it all in one would allow you to not be looking at another surgery hopefully after the healing with this one. You are running this gambit well my friend, with head up straight lines......Love and Hope to you, Buzz

krf's picture
krf
Posts: 99
Joined: Dec 2009

Hi Buzz- I am wondering if we have some confusion here between the HAI pump and HIPEC aka IPHC? HAI pump seems to me something that could be cremated- I do not think that the warm bath of chemo in the belly leaves anything that can be fired!
And, to my dear hubby, I think they do do (hee hee) HIPEC at both those institutions. However, there are only 4 or five centers that do the cytoreductive surgery plus HIPEC with any volume. We were told by Dr. SHen that MD Anderson frequently sends candidates for this procedure to Wake Forest. Dr. Levine and Dr. Shen perform many of these surgeries- as a matter of fact Dr. Shen performed 2 this week.

I actually watched an online procedure Dr. Shen performed back in 2004. He and Dr. Levine were explaining things during the webcast. It was fascinating to see how they use their hands to feel for lesions, as well as their eyes. It was so much less technical than I would have thought! (ANd it is not for anyone that feels the least bit squeamish) And during the course of the procedure Dr. Levine explained some of the parameters needed to be eligible. In 2004, someone with hepatic mets would not have been eligible. So now, here we are, and ROger is a possible candidate. I am so thankful.

Roger might still not be eligible. We will have to get through the MRI and the PET and his liver will have to pass inspection. Also, he has to have another colonoscopy to have a closer look at the primary- hopefully it will have shrunk enough that he will not have to have radiation before surgery. I have a question about a colonoscopy when you have a colostomy- do you have to go through the cleansing? ANd if so, why? It would be nice if he could skip that part!

Wishing you all well!
Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey Roger

Just wanted to throw my support your way, for what that might be worth, LOL :)

Glad you enjoyed the poem - good to hear from you - hang tight and move forward, there's "No Time to Kill", right?

Take it ez, buddy

-Craig

Brenda3.16
Posts: 211
Joined: May 2009

Hi Roger and Kim,

Thanks for all of the information. Roger you are lucky to have Kim to help you with the planning. I hope that you have a successfull appointment and good time in NY. I live about 2 1/2 hours from NY and love to go to visit.

I teach 7th grade Math at a middle school in a rural area. It is an excellent school system. My daughter is in 8th grade in the same building. 7th grade is fun. I love my job and am really thankful that I have been able to work. When I was on Folfox. I had to take a couple days off every 2 weeks. I was on Folfox in April and May and all summer when I was off. Currently I don't have to miss much time at all with the Avastin and Xeloda as long as I can get a late day appointment for the Avastin. I had a lot of sick time saved up. I was always very "healty" before DX and never missed work. We were off for 3 days this week because of the snow. I find when I am not in my normal work routine, my mind has too much time to worry. I do enjoy having more time to go on the boards when I am not working. I feel like many of you are a lot more well informed than I am becuase you have more time to dedicated to research.

I hope that the surgery is an option for you. I have been told by Sloan, U of Penn and U of Maryland that surgery is not an option for me at this point because of lung and liver mets. I am hoping that it will be an option at some point.

I wish you luck and appreciate you sharing your information.

Brenda

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