CancerCompass message board discussion started by Antmel on 9/15/2005 http://www.cancercompass.com/message-board/message/all,2967,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Pancreatic cancer is an extremely difficult cancer to diagnose and by the time they diagnose the disease it is to late. In December my father was having pains in his chest and upper back. He thought that he was having heart problems. No heart problems found. Then around Feb. he was having severe pains in his upper back. He thought he pulled a muscle. The pain got so bad that he went to the ER in March to find out what was wrong. On March 10, 2005 my dad was diagnosed with pancreatic cancer. By this time he had developed jaundice. He was admitted into the hosptial on March 11, they put a stint into the bile duct to take care of the jaundice. My dad was never a candidate for surgery as he had small spots on his liver as well. The doctor suggested chemotherapy. My dad agreed to this, which was a suprise to all of us as he had said that he would never take any chemo after watching his brother lose a battle with brain cancer. We read everything we could find on the disease and were shocked to see that the survival rate was 3 to 6 months, unless you have the Whipple procedure they seemed to have cases of patients lasting five years. My father started his chemo treatment in April and had 12 treatments (Gemzar). He then had his blood work and CT Scan done in June. His billirubin level had dropped from 1820 to 900. This was the first positive news we got. Unfortunately, it did not last long. When he got the results of the CT Scan it showed that the tumors on the liver had shrunk or disolved but the one on the pancreas had continued to grow. He was then given the drug Tarceva. Dad complained about this drug from the start. He did not like the side effects that he was having. The side effects his was having were not common so the doctor decided to stop that drug and continue with the Gemzar. Our world turned upside down on August 20. We had to take dad to the ER, he was having problems with breathing. They found he had a blood clot in his lung and he was admitted into the hospital. At this time we watched dads health decline. He complained of pain in his hips and lower back more and more. We caught the doctor one morning on rounds and discussed this matter with him. He asked if we had considered hospice. He told us that my dad only had one month, we might have two months but the treatment was not working and the cancer was spreading. Dad agreed to the hospice care. He was release from the hospital on August 26 and that night the nurse from hospice came to my house and discussed everything with my mom, myself and my sister. She told us that based on what she has seen, she told us that dad was a very sick man and that we probably only had two weeks. We were so shocked to go from a possibility of having two months and now being told that it was two weeks. My father lost his battle on August 30, 2005 around 3:00 a.m. Dad was only 58 years old. My dad complained of pain during his course of treatment but none of it seemed to be completely unbearable for him. We had prayed at the time of the diagnosis that he not have to suffer and I thank God that he did not have to suffer as I had seen other family members do. The night before he passed was the only "bad" night that he had. It was the hardest thing to watch. We know that this is all God's will and we can not change it. Of course we pray now that God give us the faith, courage, hope and strength to get thru this. It has been extremely rough for me as my dad passed away on my birthday. In honor of my father, my family has decided to join in with PanCan and help raise money in order to get awareness out there and also get the funding started as early detection is the only chance we have of beating this disease. God Bless all the families that have been affected with this disease, my prayers are with you. Antmel Thu, 15 Sep 2005 00:00:00 GMT Thank you for telling us your story with your fathers pancreatic cancer. My father was diagnosed with stage 3/4 pancreatic September 5th 2005. We tried to do the Whipple Procedure this Monday September 12th but the surgon found more cancer on his abdominal wall and called it off. I don't know how long this is going to go, 3 months, 6 months, a year. I'm not done fighting and I wish my fathers fighting spirit was better. All in all, your story gave me comfort. Its probably the first straight talk anyone has given me. Lasermike026 Fri, 16 Sep 2005 00:00:00 GMT Hi - I'm new to this message board idea, but I thought I would start with the recent message because it may help me get through some of the grieving period. My mother passed away on June 8, 2005, after being diagnosed with pancreatic cancer on May 30, 2005. Quick, Yes!! I live in South Carolina and had a wonderful relationship with my Mom in New York. I had lived away from my Mom for several years, but our times were special when we saw each other and our phone conversations and e-mails kept us connected. In the fall of 2004, she started complaining of fatigue in mid-morning and this continued until Christmas. She had a bout with pneumonia and then an apparent "food sickness" symptoms that lasted a week in the spring. Her primary was treating her symptomatically and labs came back normal all through those periods. My Mom thought she had twisted her back or something in mid-April and the doctor diagnosed a "lumbar sprain". She was treated for two additional weeks on anti-inflammatories, etc. When they decided to do further x-rays, it was beginning of May, which brings us to Memorial Day weekend when the pain was so bad, my brother had to take her to the ER. It was then that a CT scan revealed a tumor of the pancreas with some spread to the liver. The next step was biopsy. She called me Memorial Day night to tell me this news, which was a total shock. My Mom never smoked, drank, ate very healthy and would walk 2 miles a day. Well... after the first few days and calls to the doctors, I got in my car and went to NY in search of some information and a care plan for the future. We went from talking about chemo... to a pain pump... to hospice care... to funeral arrangements. It was 10 days from diagnosis to her passing and now three months later... the numbness is beginning to wear off. I took care of all the arrangements and her business affairs as she and my Dad had been divorced for many years. That has kept me busy up until now. I have also been in touch with PanCAN and I am so grateful for what they are doing. I have decided to do whatever I can to make people more aware of this horrible disease. I owe it to my mother and the other families that have to suffer after hearing the news of pancreatic cancer. I'm starting by doing a cookbook with friends, family, and contacts contributing and all monies will go to the pancreatic cancer foundations. This disease is on my mind all the time and I do internet searches to see what is out there. Today, I was lucky... I found this site so I don't feel so alone in all this. Thanks! Karencan Fri, 16 Sep 2005 00:00:00 GMT I stumbled onto this message board myself and it seemed to be a little therapeutic for myself to write my story on here. I know the PanCan board is full of good testimonials only. Reality is that those stories are few and far in between. My father never gave up his fight to beat this disease and we encouraged him every step of the way. I do have one regret, we kept all the research information that we had found away from him. We didn't want him to know that the stats showed the survival rate of 3-6 months just so he could have made sure he had all his affairs in order and naturally I have selfish reasons as well. I would love to have found letters that he had written and hid away for us to find if he didn't beat the disease. I think he thought he had plenty of time to do that kind of thing. I don't think that he had expected to go down hill so fast because he was doing so well with his treatments. Then I see the other posting from Linda and she didn't even have that long. I know we were lucky to have the time that we did. We had asked the doctors to be up front with us from the very beginning. My dad's oncologist told us that he cannot give us quantity of time because the odds were against us but he was going to give my dad quality of life. But we did find out in the end that doctors do not like to have to admit that they are loosing a patient and it is difficult for them to have to deal with that as much as the difficulty of us coming to terms with the end as well. When we were making the arrangment for my dad's funeral and we went to get flowers, the guy at the florist asked us a little about my dad so he had some idea about the person in designing the arrangment. When we told him, he told us that he had a cousin that was just diagnosed with PC as well. I told him that the only advise that I have for him is this.... if this is a special person in your life, spend as much time as you can because you may not have a long time to do it. I told him that I hoped he would be one of the lucky ones. I also gave him a bracelet to give his cousin to wear. When my dad was first diagnosed I found out that purple was the color for PC awareness. I purchased purple bands that had the words FAITH HOPE COURAGE STRENGTH on them and my entire family has been wearing them since that time. I continue to wear mine everyday. God Bless you and your family. Antmel Fri, 16 Sep 2005 00:00:00 GMT Hi my name is Tina and I am from Ireland. I just wanted to say how sorry I am to hear about your father. My mother was diagnosed with pc on July 25th this year. Sadly she passed away 7 weeks later on the 15th sept.She had just turned 57. Not only was she the best mother anyone could wish for she was also my best friend in the whole world. I am finding it so difficult to live without her but I am trying to remain strong in honour of her. My mother remained strong and positive to the end and always kept a smile on her face, she is my hero. We were shocked at how quickly this horrible disease took her but I am so grateful for the 28 amazing years I had with her in my life as my mother and best friend. It is only 3 weeks since she passed away and I am still very much in the "numb" stage. But we must try our hardest to continue on and stay strong and think of all the wonderful times we had with them. I am still in a complete state of shock but I am very thankful that when her time came to go (although too soon)she went very peacefully and in no pain or discomfort. She was also talking about my cousin who passed away 4 years ago that day and that she had been talking to her, so it comforts me to know that she was greeted on the other side by family members who love her. This website is an absolute godsend and I find it so comforting to know that I am not alone. Keep strong and stay positive. God bless. Tina Xtina Thu, 06 Oct 2005 00:00:00 GMT Tina, Thank you for your note. I too am sorry to hear that your mother also lost her battle with PC. I also see how lucky my family was to have had the time (over 5 months) that we had with him as you did not get that much time. We spend a lot of time now looking at old photos and remembering the good times that we had. We also see photos and times that were forgotten. The one thing that I'm trying to do now is make sure that I start taking a camera with me and taking photos when we are together with family. I regret that I had Easter at my house this year and didn't even take any pictures. Dad's birthday was 10/6 and it was hard to get thru his birthday and I'm sure the holidays are going to be more difficult. Like your mom, my dad also told my uncle a few days before he passed away that he was seeing dad (my grandfather) in the doorway all the time. I'm sure that is the reason that my dad passed so peacefully as well, as he had a great guide for his trip to paradise. God Bless. Melissa Antmel Mon, 17 Oct 2005 00:00:00 GMT Hi Melissa, Thank you so much for your response. It is so good to speak to someone who is going through the same thing as me. It was my 28th birthday last saturday 10/22, and it was such a hard day to get through.I miss my mam so terribly, sometimes I feel like I cant go on, but I get strength from somewere (my mam) to carry on. Everything I do now is in honour of my mam and I hope that one day I will be even a fraction of the amazing mother and best friend she was and always will be to me. We are so lucky that our parents passed so peacefully as pc is such a horrible and painful desease, most people end up in an awful amount of pain and very distressed. I thank god every day that my mam is at peace now and free from pain and happy. I hope more than anything in the world that she is somewere beautiful, reunited with loved ones who passed on before her. I hope you also find comfort in knowing your father is at peace and free from pain now. My prayers are with you and your family. Take care & stay strong! Slan agus beanacht (goodbye & take care in Irish) Tina xx Xtina Tue, 25 Oct 2005 00:00:00 GMT