Survival from Pseudomyxoma Peritonei
The Story of My Father's Battle Against Cancer



This page is dedicated to my dear father Yu-zeng Lu and Dr. Yan-yong Jiang, a prominent surgical oncologist in China, who, with his remarkable skill and kindness, helped my father fight against cancer and gave him a second life. Also this page is for all the friends who helped us cordially during the long ordeal. We publish this page in the hope that more patients will be saved and by doing so, continue the Internet tradition of sharing.

Shocking Morning

About one and a half years ago, my father, Yu-zeng Lu, got a rare cancer in Chengdu, China, the place where our home is located. One Winter morning, he felt pain in his abdomen while at work. He was sent to HuaXi NO.1 Adjunct Hospital, a major hospital and medical institute in my home town. This started a long and anguished journey that has changed everyone within the family...

Initially, the doctors thought it was a common inflammation on the peritoneum. So my father had an exploratory surgery on Dec 18, 1995. During the operation, a large tumor and a lot of light yellow transparent gelatinous material was observed. Greater omentum adhered to ascending and transverse colon with a hard rugged surface. The upper boundary of the tumor could not be detected, but its lower boundary is on the level of naval. The tumor also adhered a little to peritoneum. He was diagnosed with a very rare cancer - mucinous adenocarcinoma metastasis in mesenteric fat tissues.

Long Day

Since January, 1996, my father has undergone chemotherapy for more than 9 months without much response to several types of "effective" medicine, like FUDR, 5'-DFUR, and UFT etc.. The size of his tumor remained unchanged. But luckily, he was able to walk for a short distance during the day.

By accident, we learned of BeneFin, a shark cartilage product granted with IND (Investigational New Drug) status by FDA. Since the theory behind its use as an antitumor agent - antiangiogenesis effect is sound and well established, it is non-toxic, it appears to be an safe therapeutic agent, has been shown to diminish pain and improve quality of life, and it is readily available at health food stores, we decided to give it a shot. Since mid October, 1996, my father has taken BeneFin orally, starting at 27g, gradually increased to 35g per day per 100 lbs weight, a recommended dosage for advanced cancer patient. He has taken it for 26 weeks but didn't show any improvement either.

Dark Night

On Dec. 10, 1996, swelling of the feet was observed, Since then, the situation has deteriorated. On Jan. 9, 1997, he was hospitalized again. The tumor enlarged to occupy the whole abdominal cavity. There were a large amount of ascites. (couldn't be withdrawn even with large needle because of the high viscosity and felt like stone due to the super high abdominal pressure). Two lower limbs and scrotum showed severe edema. Hgb has dropped to 8.5 g/dL. He was extremely exhausted and thin.

Doctors didn't know what to do. They have basically given up because no surgery nor chemotherapy was applicable. But we would like to do whatever we can to help him. All the tests till then have shown that his organs were normal except being squeezed by the ascites to the extend that it was very difficult for him to take anything orally.( His diaphragm has been pushed up by the ascites). His lymph nodes were clear and bowel movement was normal. So there must be a chance, a thread of hope lies at the end of the tunnel. We refused to give up.

Sitting in front of the computer, my sister sent a letter of SOS to the famous cancer newsgroups sci.med.diseases.cancer and alt.support.cancer on Internet. "Hi, there, I am posting for my dear father who is 58 yet in critical condition now in China because of the threat from huge amount of jelly-like UN-operational ascites in abdomen....." It was Tuesday, Feb 11, 1997. We didn't know what to expect, We were waiting and seeing.

Dawn

Now, It was Wed, Feb 12. The bright sunlight penetrated through the dark sky to reveal a new day. We sat in front of the computer again and felt a thrill coming out of hearts. It was a cancer patient named Pam who had written a long electronic letter to us. She said she had the same cancer in 1993 and had been in remission since then due to aggressive surgeries. She told us that the cancer was named "Pseudomyxoma Peritonei (more about PMP)" which is usually the result of cancer of the appendix, and it is TREATABLE although there are not too many places in the world where it is treated properly. She gave us two references, Dr. Paul H. Sugarbaker at The Washington Cancer Institute of Washington Hospital Center in Washington, D.C. and Dr. Brain Loggie at The Bowman Grey School of Medicine of Wake Forest University in North Carolina. Another cancer patient named Ellen also suggested Dr. Sugarbaker. That's it! There is no better news than that.

We started writing letters. Both doctors gave us warm replies. Doctor Sugerbaker examined my father's latest CT scan and mailed us the surgery manual with personal letter indicating that it is possible to have Cytoreductive Surgery. Doctor Loggie made a call to my sister answering all questions we wanted to ask. How wonderful there are so many warm-hearted people out there! We felt that we were never alone.

We started preparing. It was not an easy task since there were a lot of practical problems ahead of us. Long hours of journey, father's physical condition, financial obstacle, far-away from our working places, to name just a few. One day, my roommate said, "Why don't you try the best surgeon in China?" Yeah, why not? Maybe it was not a bad idea at all.

After spending several days researching the promising hospitals and doctors. I wrote a letter to Dr. Yan-yong Jiang in Beijing 301 Hospital explaining the difficulties. He wrote me back an email promptly. "Received your letter. I want to see the patient....."

New Day

After that, my family began wading out of the long ordeal and saw the light of hope shining at the end of the dark tunnel. Good news continued reaching us almost everyday: My father was sent to 301 hospital on April 22, 1997; He had a small emergency surgery the next day during which 9000cc ascites was removed; His edema disappeared; He can start walking for a short distance daily again... I flew back to Beijing on May 3, 1997 to accompany my father during the big operation on May 8. Dr. Jiang supervised the whole process. Through 6 hours of intensive work, they removed the huge tumor resided in the abdominal cavity along with 5000cc small jelly-like tumors in the peritonei. Suddenly, my father felt relief. The whole family felt relief.

Right now, my father is recovering nicely in the hospital. Before I left Beijing and came back to U.S. on May 20, he can drink soup and sit in the bed by himself. Remember, he can not lie down completely or sit up for at least two months!

What a wonderful triumph! What the wonderful people! Although we do not know what future holds for my father, we do know the meaning of love and persistence. We feel the strength that we have received is so enormous that is sufficient to conquer the impossible.

Postscript

It has been half a year since I wrote this page. After I came back to the States, my father had another surgery on 7/2/97 to remove the remaining tumors, especially those which suppressed his bladder. He has been recovering very well ever since. In late October, 1997, my father had a complete CT scan and the result was very good.

Both my parents' lives are almost back to normal now although physically my father is not as strong as before yet. They came here and visited my sister and I in 1998 and we are thrilled to see them happy and healthy.

P.P.S

My father has regular exams twice a year since then. Even though he feels just fine, doctor cautiously decided to perform another surgery in Dec. 1999 to remove a growing tumor. and he quickly recovered, and is back to his busy life.

Resources

  • References:Papers in medical journals on treating pseudomyxoma peritonei.
  • Brian's Corner: Story of another cancer patient surviving pseudomyxoma peritonei.
  • National Organization for Rare Disorders, Inc. (NORD), PMP in NORD
  • NIH/Physician's Data Query
  • American Cancer Society


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    Bo Lu
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