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want a survivor friend

stpjlm
Posts: 5
Joined: Mar 2003

I am a 57 year old woman who was diagnosed with pancreatic cancer 9 months ago. I am looking for an e-mail buddy to share experiences and feelings with.

pch
Posts: 2
Joined: Mar 2003

Hi, I was diagnosed with PC on 11/15/2001.with spots on my liver and a small spot on my lung. I am 64 now. I was on Gemzcar for almost a year. It worked great, I felt good, my major issue was diarrhea. I started having pain again last Nov. We switiched to a combination Gemzcar & another drug for 4 treatments. I had problems , lost weight, and just didn't feel good. After more test, my doctor switiched me to a chemo/drug combination. The chemo is tettorzine(I'm not sure on that name) and the pills are zoloda. I nno longer have diarrhea. I have lost most of my hair and now wear a wig. The first protecal seemed to give me the worst reaction. Now it has been going quite well. I have moved closer to one of my daughters, and my 3 grandchildren have certainly kept my spirits up and given me a positive attitude. My husband is in the early stages of Alzheimers, so my family is faced with a double whammy with our illnesses. I think I must be doing well. In the beginning we thought I wouldn't survive 6 months, as I had lost 50 pounds and was all skin and bones. Now we just take it day by day, but I feel I have a few more years left.
How are you doing and what therapy are you on?
pat

stpjlm
Posts: 5
Joined: Mar 2003

hi pat. i had surgery but they couldnt remove the tumor--wrapped around main artery. i was sooo yellow they thought it was my gallbladder-wrong-they rushed me to boston to have a stint put in bile duct comp blocked-soooo sick . lost 40 lbs in a matter of 3-4 weeks before that. they had to get me strong for a whipple proc, went in a couldnt removed gallbladder did a bile bypass last june horrible they cut all my stomach muscles to get there and checked all aroun advanced localized 5 weeks of 5fu continually atound the clock wore the cassette around my waist with a pic line. same time had 5 wks of rad. dec 2002 started gemzar made me sooo sick anyway we stopped after 6 treatments just had tumor markers done tues. im stable thank god for now. feel good except sooo tired in spurts. didnt lose my hair withthis chemo.would you like to be a e mail buddy?? if so send me your address. yup you have a double wammy. so sorry pat. where are you from?? im in new hampshire hope to hear from you, Jo

pch
Posts: 2
Joined: Mar 2003

Dear Jo,
Where in NH are you from. I lived in Durham when I was diagnosed. Actually born and brought up in the Dover area. Please contact me at josiehome@msn.com. My tumor was wrapped around the opening to the pancreatis and with spots on the liver , I wasn't a prospect for radiation therapy. Am feeling great now. Just keep fighting this bugger off. Pat

sturley
Posts: 2
Joined: May 2001

Hi Jo,
I'm not usually in the chat room but tonight it seemed appropriate - and even more so that I respond to you. I was diagnosed with PC 4/2001; blessed to have Whipple; and even more blessed to find wonderful oncologists that tried me on an experimental protocol.
After surgery I too wore the fanny pac with 5FU and simultaneously had 13 weeks of radiation. Unfortunatley I did not meld well with my original oncologist and sought a new one. I am convinced that taking charge of my own healing was my first step to recovery.
Armed with a new oncologist, I was referred to the Columbia Medical Center in NY to determine if I was a candidate for their trail. I was accepted and accepted the aggressive treatment schedule which was,Zeloda (pill form of 5FU) over a 5 day period, IV Taxatere one day and IV Gemzar another day. Inessence, I was administered 3 chemo treatments in one week. My schedule was 2 weeks on and 1 off.
Due to the toxic effects of the treatments I was not always able to complete my treatments. However, during those times I was either given a week or 2 off along with other drugs to boost my hemglobin. Clearly I suffered most if not all of the side effects - but! - I write to you now to say- Keep the faith and by all means know that God answers prayers. April 7,2003 marked my 2nd year as a cancer survivor and I give all the praise and honor to God!!!!
Keep searching for what works for you and how you can best handle your situation, keep a positive attitude, and by all means pray and thank God for the blessings that He has ALREADY given!!!!!! You and others will forever be in my prayers.

HopiRaven
Posts: 2
Joined: Mar 2003

Hello. Although I am a cancer survivor, it is my mother who is a Pancreatic Cancer Survivor. She had a Whipple surgery in July of 1997, and is still doing fine. She was 64 years old at the time. Mom and I are very close, and although she does not currently have email, perhaps you would be interested in corresponding with me? I was caregiver to my Mom during that whole year, and just as she was really better, I was diagnosed with colon cancer. She became my caregiver! The words pancreatic cancer are horrifying, and I do understand your feelings. Would be very interested in hearing from you anytime. Take Care, Sharon (HopiRaven@aol.com)

stpjlm
Posts: 5
Joined: Mar 2003

dear sharon, soo sorry about your mom , and you to now. i know you must be soo devasted. i wasnt able to have the whipple, as the tum. is encasing a main artery had rad. and chemo, just waiting now see doc tomorrow, mon. im so panicked-living from one blood test to another is exhausting and have trouble finding a new way of normalsey to my life. cant work on longterm disability noe. later, would love to talk to you.. your mom IS DOING GOOD!! god love her hanf in there sharon my e-mail address is bubba14@attbi.com name is ms. jo miller

Jimmyz
Posts: 1
Joined: Mar 2003

Hi there, I am a 56 year old man and was diagnosed with Zollinger/Ellison syndrome in 1997. ZE is a tumor that makes a hormone that stimulates the stomach acid gland. The symptoms are constant heartburn and daily diarreah. Scans could not find the tumor at first but we knew it was there because of the hormone. June 2002, a routine CT scan located the tumor on the head of my pancreas. It was found to be malignant and they wanted to do a Whipple. Research into the Whipple procedure scared me more than the tumor, plus my insurance wouldn't cover the specialist that I found to be the most experienced at the Whipple. I started looking for alternatives and began visualization and imagery classes at my local cancer care center conducted by a Certified Clinical Hypnotherapist. I also radically changed my diet and attitude, and low and behold, a CT scan in October saw NO TUMOR!!!!!! And now another scan last month (Feb) and still no tumor to be seen. There is hope!!!! My e-mail is pnjberger@hotmail.com if you or any one else would like to write. I love telling my story!! Good luck,
Jimmyz

tdeanhall
Posts: 1
Joined: Mar 2003

I am 47 y/o woman and I was diagnosed on Oct 7, 2002 with pancreatic cancer. I had had trouble with elevated liver function test and had had my gallbladder out the previous Oct. They had to go and retrive a gallstone in January but I continued to have elevated liver functions. They were planning on bypassing the common bile duct when they found my cancer. I had a whipple procedure done and had 25 radiation treatments and have had 5 months of 5FU continuous for 72 hours. Was started on Gemzar every two week in January. I will have my last treatment on April 29th. I had a CT scan of brain, chest, abdomen and pelvis and a complete body bone scan done two weeks ago and they were all normal. My worst side effect is fatigue, which was especially bad with the radiation. I have all my hair and have not had a problem with nausea or diarrhea from treatment. I do have some problems due to whipple. They removed the bottom 1/4 of my stomach...this is the part that does all the work. Feel full all the time...hard to put weight back on, but I am up 10 pounds since surgery. I had lost 25. I have a wonderful husband and daughter. Couldn't have made it this far without them. I was able to go back to work 3 weeks after my surgery. My bosses allowed me to work whatever hours I wanted to. Getting back to work was a life saver for me....not so much time to just think about your cancer. Pancreatic cancer has a very bad reputation...but I have every plan of beating it. You can e-mail direct if you like @ tdeanhall@aol.com

yknot's picture
yknot
Posts: 1
Joined: Jun 2002

Hi anyone with PC. I'm a 71 yr old survivor. Had the Whipple, etc. August 1988 (almost 15 years). Still kicking along pretty well in spite of a bunch of artifacts. No monumental secrets or such but have some ideas about it. If you want to talk or vent or whatever, e-mail me at Fhs001@aol.com. God bless us -- everyone. Skip

ttrci
Posts: 3
Joined: Apr 2003

Skip, so glad to hear you are still kicking. What stage was your PC.

lisacraw
Posts: 3
Joined: Apr 2003

Hi
we just found out my mom has pancreatic cancer. She is unable to have surgery at this time because the tumor is wrapped around the blood vessels. They are going to try chemo and radition to shrink the tumor. I am 31 years old and scared to death for my mom. Everything I read on the net says if you can't have surgery..you don't survive. I am trying to find other treatments and share stories with others. if you would like to email me it is lcraw@new.rr.com I will pray for you also Take care!

ttrci
Posts: 3
Joined: Apr 2003

Im in the same spot. Scared to death I may llose my husband. His PC is not resectable at this time. They are trying Chemo to shrink it so they can do the Whipple proceedure. It still sounds so grim. Ttrci

penlop
Posts: 3
Joined: Oct 2003

Hi, I'm 33 and have just had the whipple procedure and I had cancer in my bile duct area..but the catch with me is that it was melanoma. The doctors just keep acting like there is no hope. I am so scared...I have a 4 year old. I'm looking for advice from anyone out there...has anyone had melanoma in the internal organs? What if any treatments should I try? My address is jpniles@mhtc.net. Any advice would be appreciated! penny

FAITHnGOD
Posts: 2
Joined: May 2003

Hi, i'm not a cancer survivor but mom was diagnosed with PC with spread to the lungs a few months ago. She has lost over 40 lbs and she continues to lose weight, she cannot eat because she has so much fullness in her stomach. Her tumor is not resectable b/c it is involved with some of her major blood vessels, they cannot perform whipples. me and my whole family are so scared for her, she starts her chemo this week or next week, we're not sure yet. what are your experiences???

stonegang
Posts: 3
Joined: Jun 2002

Hello: I am a 55 year old 1 year pc survivor and 2 year lung cancer survivor. I would really like to have a survivor friend. There are not many of us around. I am in Toronto Canada and my name is Gale. My email address is stonegang@yahoo.ca and would love to hear from you.

blt
Posts: 5
Joined: Jul 2003

Hi, I had the entire left lung removed feb 02 and seemed to be doing great except short of breathe at times and used oxygen for some activities. 2 weeks ago found a nodule, apparently second primary, in lower right lung. Waiting for Tumor Conference for recommendations but at this point it appears surgery is out due to my impaired lung function and location on the nodule(deep) I would like to hear from you or any other lung survivor. You can reply here or e-mail is wtandbl@kc.rr.com

Carolyn-jean
Posts: 1
Joined: Jan 2009

Are you still looking for a pal? It's been a long time since you posted this.
Cj

b616
Posts: 5
Joined: Jul 2009

Hi,

I had gall bladder surgery, the Dr. saw an obstruction
after weeks of checking it was discovered to be cancer
in the pancrease. I had the whipple procedure at John
Hopkins, Baltimore, Md. I live in VA. Just finished
25 treatments of chemo and radation. They are giving me
a little time off now before more checmo.

Barbara
b616
hawkins.team@yahoo.com

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