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LYNN'S STORY


This is my husband Rich's bio, age 51 when diagnosed with stage three pc. 4-99. I was 41 and our son was 15yrs.. Just a little history to let you know where we are coming from. My mother passed away 5-97 with colon ca with mets to the liver and lungs. I spent 8wks. doing home hospice care with mom, a very good experience. 2 yrs. later dealing with this. Rich's signs and symptoms started as ulcer type for a few weeks, then vomiting and turned jaundiced. Was admitted from docs office, ERCP the next day, Eus 4 days later, and whipple surgery 3 days later. Our whole llife changed in 1 wks. time. Tumor was approx. one inch in size and in the head of the pancreas, attached to the portal vein, and 2 lymph nodes affected. Portal vein was resected. We were told to expect reoccurence, often to the liver-liver. We had problems with infection in the incision from the surgery even before we left the hospital. Wound was opened a few days later and then healed. 6wks. post whipple, started Gemcitibine once a week for 6wks., lots of cramping during this time. Blood sugars went up and started on insulin injections. Next had on 5FU pump continous for 6 wks. along with radiation treatments #25, missed last 3 , too weak and diarrhea. Also developed a blood clot in arm with mediport during this time and received Lovonox injections at home. Was due to restart Gemcitibine again for 6 wks., but took vacation to Canada in between.. Day before we left and 1 wk. off chemo/rad developed abcess on abdomen, incison line opened again by doc.. We still left for vacation the next day with bags of medicine and bandages to do dressings 3 times a day. Surprisingly we had a good trip, we were determined!! During this time we switched onc. docs also, trying to find compassion yet aggressiveness in our doc.. We were offered the clinical trials before we started treatment, but we wanted to definitely use 2 drugs versus 1. We started Gemcitibine again for 4 wks. , but kept developing abcess with pus drainage from the abdomen. This occured 4-5 times , would heal and reappear, went through many antibiotics. Rich continued to lose weight and strength. Also was seen in ER 2 times for kidney stone during this time. By X-mas Rich was so sick, I thought we were losing him. I insisted doc see him, more tests and found he had a percutaneous gastric fistula from the recurrent abcess on the abdomen. Next step, EGD and clamped G-tube placement to keep wound open and draining so it could heal, it didn't work. End of 1/00, developed edema of abdomen(ascites) and swelling of legs and feet. CT scan#### done again for possible tumor causing ascites. Results, thickening seen where part of stomach was removed, surgeon states my gut feeling is that this is a tumor and is making the fluid build up in the abdomen. We were told Rich had 3-6mths. to live and could do chemo if wanted to extend time. This was our worst day of our lives. I felt very unsettled, needless to say what Rich was going through. I told Rich we can't live with a gut feeling, need definite proof, this is your life. 2/00 admitted to hospital with positive blood cultures, infection in the blood and needs IV antibiotics. Medical doc got involved and actually listened to us and got the GI/onc./ surgeon docs all together. EUS#2 done and results showed thickening seen on CT scan was an anastamosis site from surgery, no tumor. A few weeks later, blood cultures positive again this time worse bacteria and told Rich is septic and needs big time antibioitics, Gentamycin and Vancomycin IV and then surgery to repair leak from intestines where baacteria is coming from. We administered IV antibiotics at home around my work schedule. 3/2/00 had exploratory surgery and repair of perc. gastric fistula. Doc was concerned about finding reoccurence of tumor. Rich by now is more thin and continues with abdominal pain despite unsuccessful nerve block fall of 1999. (didn' work because of abd. abcess) Well we prayed and prayed and surgery turned out well, no tumors, no cancer found, abcess/fistula was from undissolved internal suture that triggered infection. Also told Rich has portal hypertension causing ascits and edema of lower legs. This was another 10 day stay in the hospital. I pushed for TPN and Rich received it for a few days prior to coming home. GI doc has been following Rich since second surgery for the portal hypertension and plans to do EUS every 6mths. for the first few years to watch closley for reoccurence-due 9/00. This was the first time someone said years to us, other docs very negative so far about prognosis. 6/00 saw onc. doc for routine appt. and Rich feels something bad is going on because of wt. loss(193#-140#), back pain, and occas. stomach pains. Routine labs, bone scan, CT scans of chest, abdomen, and pelvis ordered. Bone scan, CT chest and pelvis were ok, CT abdomen shows dilated bile duct and alk phos (lab test) is very elevated(1000). Also anemic. We returned to GI doc and were told possible blockage and EUS#3 and ERCP scheduled. By this time our fear of reoccurence escalated even more, although doc said he didn't necessarily feel this was a reoccurence. It sure sounded like what happened when all of this started a little over a year ago. Well, the results are back and the ERCP and EUS are normal, no tumors and biopsies of nodes and fluid is benign. As I write this today, 8-1-00, we have just found out these wonderful results. I cried again, (nothing new since this terrible disease started), but this time tears of extreme happiness. I know our battle will continue and in 3-6mths. we will be waiting for results again-it seems like we're always waiting. I thank the Lord each and every day for giving Rich the strength to fight, myself to keep pushing for answers, and for our son to try and understand and accept our life change. We still battle pain, weight loss, and lots of GI problems, but it is 15mths. past the whipple and Rich is with us. I think he will beat this!!!! I hope the info I have given here can be of benefit to others dealing with this monster of a disease./Lynn


Posted 08/04/2000 03:36 pm by Lynn
E-mail Address: Rlynncup@aol.com

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