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Cousin with stage 4, Help Please

yesyes2
Posts: 592
Joined: Jul 2009

HI,

I used to post on the Lymphoma board but have never posted here. I am a 2 time NHL and 2 time BC survivor but really could use your help here. Have a cousin through marriage with stage 4 colon cancer. It was never found on colonoscopy, grew on outside of colon, very invasive and aggressive. They have given him 6 months or less and we do not know what options are available to him. Doctor did mention something about a trial with hot chemo directly in to stomach. Does anyone here know anything about this trial? He feels defeated before he even begins. Or information on other chemos for stage 4? Any help would be really appreciated. Sorry I don't have any more information to give you. If it were me I'd be going to a major medical center and the best doctor available but he is not me.

Thank you in advance,
Yesyes2

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

Intra peritoneal chemo - bathes the affected area with much stronger chemo than can be given IV.

Please ask that he have his pathology rechecked by a major cancer center. I had cancer on the outside of my colon, but it was appendiceal in origin, and is treated differently. I was treated at Memorial Sloan Kettering in NYC. My colonoscopies have always been clean, even 6 weeks before my cancer was found (during a hysterectomy.) I was stage 4, and am in remission now - it's 4 1/2 years later, and I'm doing great.

He needs a review of his case by experts in rare cancers.

Wishing you and he well,
Alice

laurettas
Posts: 372
Joined: May 2011

I had a few questions about the intraperitoneal chemo. For one thing will they do that when people have mets in other places--such as the lymph system? My husband has mets both places so I wasn't certain if he was a candidate. Also was it a one time only procedure or over a period of time? What were the side effects and recovery time?

Sorry I have so many questions!

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

I didn't have any positive lymph nodes, but I believe it can still be used. Systemic chemo would get to the lymph nodes.

The people that I know (including myself) who have had IP (Intra Peritoneal) chemo - not the heated HIPEC treatment - have had a series of treatments. Mine were treatments 3 days in a row, during which they infused 2 liters of chemo on day 1, and 1 liter each on days 2 and 3. A belly port was placed for this purpose. It was a port that drains into the peritoneal area, as opposed to the chest port which is hooked directly into a vein for chemo. After the day's infusion, you then roll one side to the other every 15 minutes for an hour to ensure that the chemo is evenly distributed.

Note that during placement of the belly port, the surgeon will commonly check to see if there is visible, removable tumor. My belly port placement turned into a full laparatomy, with a triple colon resection, and other stuff removed, because my surgeon saw more tumor that hadn't been removed during my "surprise discovery" surgery (done at a different hospital by my ob/gyn.)

The chemo I received, FUDR (a form of 5FU) was left in to resorb. This was repeated every other week. I was supposed to have 8 cycles, but I had very rare side effects (the nurses at Memorial Sloan Kettering said that they'd never seen my side effects before) so they stopped after 5 treatments. Others who have had the treatments have told me it left them feeling bloated, and sometimes nauseous.

I developed a chemical peritonitis, such that even the saline drip without the chemo caused severe pain from the first day. For most people, there is no pain. Since the chemo is localized, the discomforts tend to be local, again, based on having about a gallon of fluid infused into your belly area.

Not many medical centers do this - Memorial Sloan Kettering does. Their chemo suites have several chemo rooms with beds specifically for this treatment. However, they only do this at their main location. The MSK satellite campuses are not set up for IP chemo. A friend had to come into NYC for her IP chemo, but was able to get her systemic chemo at an MSK satellite campus in Westchester.

This is definitely worth asking about, as it puts the chemo directly on the tumor areas. However, it is only effective if the remaining tumors are tiny, as the chemo cannot penetrate very deeply. That is why my surgeon did such a thorough clean-up job before placing my port.

annallen
Posts: 7
Joined: Sep 2011

First, I completely agree that your cousin needs to get a second opinion at a major cancer center. I don't know why they wouldn't offer him one of the chemos to see if that shrinks his tumors enough to do surgery. This site http://fightcolorectalcancer.org/awareness/treatment/build-a-treatment-plan/building_your_treatment_team/getting_a_second_opinion helped me find a doc.

Second, the New York Times did an article on HIPEC. http://www.nytimes.com/2011/08/12/business/heated-chemotherapy-bath-may-be-only-hope-for-some-cancer-patients.html?_r=1 links to the article. I know people who've had this surgery - it's done only for very specific types of disease spread, and needs to be done at a place with a lot of experience.

yesyes2
Posts: 592
Joined: Jul 2009

Thanks Annallen, Alice and Laurettas for your prompt responses. I most certainly will try to get him to get a second opinion as I know how important that is. Infact I got 3rd opinions on my cancers. And Annallen thank you for the links to HIPEC. I know that that type of chemo was mentioned to him. Is there anyway to get information directly from people who have had this type of treatment?
I just want to be of assistance to him in anyway I can. But it's so hard when we live far away from each other.
Blessings to you

laurettas
Posts: 372
Joined: May 2011

for all of your information. We will definitely look into it. I wonder what size mets are considered small? Jake had a CT scan today so we should know by the end of the week what sizes we are dealing with. That is, if all of the larger peritoneal mets show up. I know that sometimes peritoneal mets don't show in scans for some reason.

Also what was the difference between your procedure and HIPEC since your surgeon removed mets before you had the treatment as well?

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

I had no mets visible in my CT scan prior to surgery, but more were found.

In terms of the prep for HIPEC and IP, the surgeons want pretty much the same thing - virtually no visible mets. For HIPEC, surgeons often remove more organs (spleen, gall bladder, entire peritoneum) just to give a clearer field. For me, my surgeon only removed stuff if he saw tumor on it. Thus, while bits of my peritoneum were removed, most remained intact. I have my spleen and gall bladder - they were uninvolved. My surgeon expected to find no mets; with a clean CT scan, he had hoped that my prior surgeon had gotten everything. However, I was told before going under that he would be doing an exploratory laparascopy before placing the port to be sure. Since he saw things he didn't like, he then opened me up wide, from above the navel to the pubic bone, and examined everything he could, removing all of the tumor seedings.

HIPEC involves circulating heated chemo (usually Mitomycin C or Oxaliplatin) in your belly for a set period of time while you are on the operating table, and then draining it out before closing you up. The dr may manually inspected and bathe your organs in the chemo, or may reposition you, i.e. "Shake and Bake" to distribute the chemo evenly. In some cases, more chemo is infused daily for up to 5 days, both in and out.

Memorial Sloan Kettering does not do that procedure. The chemo is body temp, and if done for a colorectal cancer, is a form of 5FU, which is the main drug used for colorectal chemos. It is kept at room temp, and is left in to resorb. They started my first chemo about 24 hours after my surgery.

yesyes2
Posts: 592
Joined: Jul 2009

Wow, I didn't think that the surgury would need to be so drastic for HIPEC to be done. It is scary. It's my understanding that the cancer was on the outside of the colon and in the peritoneueum. I would think any chemo would be worth a shot but that's my own personel choice and experience. I had 5FU with my BC chemo too.
Thank you for all this great information.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

HIPEC has a bit of controversy, as evidenced by the NYT article. The treatment does need some more trials to determine its true effectiveness, but it also seems to be showing quite a bit of promise in its success stories.

If he has been given the option of a trial that is a good thing, as all of the associated expenses should be covered by the trial sponsor. It is also an indication that he is being seen at a research hospital, which is almost always the best place to be.

The prognosis of six months seems grim, but for the moment don't pay attention to it (the Oncologists that have the best bedside manner will not give a time guess prognosis), and there are several members here who have had similar prognosis, and somehow are still posting and creating new threads years after their suggested expiration date had come and gone.

Good luck to him, and to your family. As a patient, I can tell you that even from afar, every bit of support is appreciated.

yesyes2
Posts: 592
Joined: Jul 2009

Thank you Buckwirth for your assistance. His initial surgery was around the time the NYT article came out. I have a feeling that the surgeon may have been the doctor who mentioned this type of treatment to the family. And that the surgery may have been a local hospital and not a major medical center. However, there are several majors not that far from him. I will certainly try to get him to seek additional opinions and information. And you are so right, none of use have a date stamp on us. My DBL survived 6 years with untreated esop. cancer.
I pray you are doing well in your fight against this awful disease. Best wishes and healing blessings to you and your family.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

"If it were me I'd be going to a major medical center and the best doctor available".
I couldn't agree more with you.
-phil

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