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Grim Outlook

jdzed
Posts: 12
Joined: Dec 2005

Hi folks. What a wonderful resource you have assembled here. I am hoping to bend your ears for a moment because It seems I am running out of options for survival. I am a 27 year old male, otherwise in good health, who was diagnosed with an "Adenocarcinoma of the Descending Sigmoid Colon" in Feb. of this year. My tumor was Stage 3, with 11/15 lymph nodes involved. The tumor was resected shortly after we discovered it via a 22cm removal of the colon. No colostomy was needed. I had adjuvent Folfox + Avastin, 10 administrations, 6 or so with the Avastin from mid-March to mid-August of this year. My CEA levels were negligible after FOLFOX. I then had adjuvent radiation therapy at the resection site, in the hopes of preventing a local reoccurrence. The radiation therapy ended in early October with 28 administrations.

October 27 of this year my oncologist noted an increased CEA level. I also began having stomach pain and abdominal distention. I presented in November with massive ascites of the abdomen discovered by a CT scan in mid November. I had an ultrasound-guided paracentesis and 7700 CC's of fluid were drained from me. The fluid tested positive for multiple small clusters of signet ring cells. The CT (with contrast) reported a thickening of the peritoneum, but no positive identification of tumor masses on any internal organs. I began FOLFIRI + Erbitux one week before Thanksgiving. Ten days after the US guided paracentesis, I had another which yielded 1500 CC's of fluid.

I have had two administrations of the FOLFIRI + Erbitux, and one administration of Erbitux alone. While under treatment, my CEA increased from mid 5's on Nov. 17th to mid 7's, Nov. 29th. At this point, I am just looking for options. Does anyone know anything about Paul Sugarbaker and his peritoneal surgery and chemotherapy that he performs in Washington, DC? I have been advised to look into that. Also, if anyone has other ideas, I would love to hear them. Thanks so much for your time, and I look to become a regular on here.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Welcome to our group. We are wonderful as you have stated. We have a wealth of information because we have been there. I do not know alot about peritoneal mets., but I have heard the name of Dr. Sugarbaker used on this site. If I were you I would call him first thing on Monday morning. You have nothing to lose and I strongly believe in second and even third opinions. You did not say where you are getting treatments, but maybe an opinion at a major cancer center would be helpful also. I would not wait, I would want to exhaust all options now. Good luck and keep us posted.

Moe

jdzed
Posts: 12
Joined: Dec 2005

Thanks to everyone who offered support and advice. I will keep you posted, and best of luck with each of your situations. Sincerely, Jim

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Jim,
My heart goes out to you mate. I also had most of my descending colon removed with an extremely aggressive Adenocarcinoma,with 6/13 lymph nodes involved. The treatment prescribed was 5fu amd leucovorin which had been approved for Australia. I had a terrible reaction and was heading for renal failure due to fluid loss. My oncologist decided to try an old regime of 5Fu and levamisole(a cattle drench). Apparently it is surprisingly effective on advanced and aggressive stage three tumours. It may be worthwhile finding out if it is still available. The down side was the treatment stretched out for nearly a year and levamisole is SICKENING. The up side is that I have been cancer free for 8 yrs in jan and am considered cured. Good luck with your treatment whatever it is ,stay focused on surviving, my wishes and prayers will be with you,Ron.

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Hello and welcome to the Colorectal Cancer board. I think you will find this to be a great place for encouragement and to do exactly what you have just done: seek info from people who have been through many different kinds of treatment and can speak from the perspective of a patient. Honestly, this forum can become rather addictive.

I regretfully don't have any answers for you on any counts, but very likely someone here will know something. I can say that you will find other young(ish) patients, so you won't have to feel like you are alone in that regard. I'm 36 myself, which according to statistics is still young to have this disease. I'm a stage four with mets to the liver and left lung, although I had some nice cleans scans recently. Now I continue to get chemotherapy to prevent a recurrence. I'm currently using Erbitux, but you know this already because you replied to the note I posted last night (and yes, I am exceedingly interested in what your dermatologist will tell you).

In any event, feel free to come here any time to ask questions, vent, answer other people's questions, etc. This board is a great resource for all of these reasons. And, of course, I wish you the best of the best in combating the disease. There are many survivors here who are proof that cancer can be fought and put in its place.

Regards,
Rodney

themis01
Posts: 168
Joined: Feb 2005

Definitely check out Dr Sugarbaker as soon as possible. Someone also does the surgery at Sloan-Kettering. If you are a good candidate he may be able to cure you. My mom had the surgery but unfortunately her liver was too extensive to get that cancer out. He was able to work wonders in the other areas. He is very busy and sometimes you have to beg and plead for an appointment. The oncologist that works with him is Dal Yoo. If you could get into see him first he could refer you and tell you if you are a candidate. He is the only onc. that Sugarbaker works with. They are both at Washington Hospital Center in Dc. Do not let people tell you to send in scans and wait for a response you really have to push yourself in there.

jdzed
Posts: 12
Joined: Dec 2005

Thanks much! I will track down the oncologist you mentioned.

jana11
Posts: 708
Joined: May 2004

Hi - I read your post and wanted to let you know that I am thinking about you! Keep fighting and researching. I was diagnosed at 32yrs and now I am 35 with mets to both lungs - considering having my right lung removed - gulp.

So, I understand the turmoil. Keep us posted and know we are always here for you. Good luck finding the surgeons and getting more care. May you spirit stay strong.

jana

jdzed
Posts: 12
Joined: Dec 2005

Jana - it seems we are in the right place for comfort. God be with you as you decide on a course of treatment. Best, Jim

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Jim,
I don't have any info that can help you, but just wanted to add my welcome message to the list. Also, I'm not sure how true this is, but I heard that CEA levels can go up in response to chemo treatments.
Mary

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hello Jim,

Welcome to the boards.

I, too, had Stage 3 lymph pos (2/19) Adenocarcinoma of the Sigmoid colon. I had a successful resection 8/01. Adjuvant chemo was prescribed of 5-fu/leucovorin.

I said NO.

No thank you.

My sister died of intestinal cancer 9 years before my dx and I was not going to suffer due to her treatments like she did.

So.....I researched like crazy and decided to follow Eastern Medicine while using Western Diagnostics (one curative-- surgery).

What transpired was beginning a Macrobiotic Diet (The Cancer Prevention Diet by Michio Kushi), taking a ton of supplements (Beating Cancer With Nutrition by Patrick Quillin), JUICING like crazy (A Cancer Battle Plan by Anne Frahm), and various other treatments ie, acupuncture, massage, lymphatic drainage, yoga, chiropractic, prayer, detoxing (emotions, relationships, chemicals--had all my amalgams removed due to mercury content etc, and did parasite cleanses). I was under the care of both a Naturopathic Doctor and a Traditional Chinese Medicine practitioner.

My oncologist at the Mayo Clinic follows me closely and I can claim FOUR years (and 4 months) of NED!!! Being cancer free year after year feels fabulous!

I share all this to encourage you that there is a TON that you can do to balance your body out and create an environment that is not conducive to cancer growth.....

1. cut out all WHITES: sugar, flours, grains
2. balance your acid/alkaline state (cancer cannot live in an alkaline body)
3. Increase oxygen in your system--yoga, exercise etc.
4. focus on a plant based diet--especially GREENS!!

GREEN = LIFE!

As for all the other medical stuff I cannot help you since I didn't do any of that. Best of luck in that department. I seem to remember someone on here did that surgery of which you speak. I hope that person surfaces.

Again, welcome to the Semi-Colons!

peace, emily

foxy
Posts: 190
Joined: Oct 2005

Hi, like Ron I had the 5fu plus Levamisole treatment for colon cancer plus a large liver met, the best part of my story is that was 12 years ago! The levamisole is just awful but it obviously did the trick for me. Just a thought----- Virginia.

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Jim,

I was also diagnosed with Stage III Colon Cancer in the Sigmoid. I was diagnosed just over a year ago on my 27th birthday.

I am adding some prayers for you.

I would really look at Emily's posts. There is a lot to be said for nutrition and beating cancer. At a minimum, you should be able to at least prolong a HEALTHY life.

I also agree with checking out some of the major cancer center's. Often times, they have more answers and possible cures.

Take care of yourself. We are way to young to be going through this.

Tricia

mwomack
Posts: 78
Joined: Jan 2005

I don't believe Dr. Sugarbaker is treating colon cancer patients at this time. However, I have seen postings on other sites claiming he will give you names of Drs. to call. I believe the surgery is called Intraperitoneal Hyperthermic Chemotherapy for Persistent Cancer (IHPC). Wake Forest just had a web-cast of this surgery and it is available for replay here http://www.or-live.com/WFUBMC/1478/index.cfm?r=orlive

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