Pancreatic Cancer

Dear Sheila: I am so sorry for your father's diagnosis. It sounds serious. I am sorry to report to you that my wonderful husband of 15 years, Dale, passed away August 1, 2005 after being on three different protocols of chemo. From diagnosis to death, it was just short of 5 months. Of course, we are at a loss without him, and yet I think all of us were prepared for the worse and lived every moment we had with him to the fullest! Dale was 57 when he died this summer, but he lived to see his son graduate from the 8th grade, get accepted to the high school of his choice, and spend quality time with his other three children, including a family trip to Hawaii in July. We thought the tumor was shrinking at one point, but it is very agressive, and we took Dale off chemo for four weeks so he could feel better (the chemo is sooo hard to handle) - and the cancer just came back so fast and so much that we knew we had precious little time. Dale was home on hospice (my choice, not his) for one week before he left us. He never gave in, but in the end, there just wasn't anything we could do. (Dale was also on a pic line since mid-April - it was the only way he could truly receive some nutrition.) My only regret - that I didn't have him record or videotape a special "something" for each of his kids. Sheila - you and your family are in my prayers. I'm not sure how old you are (your father is awfully young at 47 to have this disease), but maybe you could help your mom fight and stay strong, but also face reality and prepare the family for what likely will happen. Once the cancer has metastisized to other organs, it is very hard to gain control, but miracles can happen. Please e-mail me anytime. Have you checked out www.PanCan.org? There is lots of helpful information on the site. Karen --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---

Hello Karen, Thank you so much for your reply. I am so sorry for your loss. I have done a lot of research on this cancer, and it isnt a very nice one to get. Not that any of them are. I am 37 years old. Bill is my step dad. He is only 10 years older than myself. My mom is older than he is. I had a real problem with that when I was 20 when they married. But... the reality of it turned out to be an awesome addition to our family. He is great to my kids, he takes them to the ranch, to ride horses, shoot guns and ride 4 wheelers. We are in Wyoming. My son is 9 and my daughter is 13. My son is the one I really worry about. He considers Bill his best friend. I have told him that he is sick. But havent given him the reality of this illness. I dont want to break his heart, and to take the time he has left up worrying about him. I know he will see Bill go down hill. The chemo starts friday. My real dad died 6 years ago from heart disease, but he lived for years with it. This will be very different. It is like losing two dads. Makes one realize how precious life is. I will pray for you and your children. You are a wonderful person for taking time to help me when you have just suffered such a huge loss. I thank you so much for that. My personal email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- would love for you to write me there. I could use a new friend, if its not too much to ask. I am not one to just get on message boards. But it seems like a great place for much needed ears. Take care Sheila

Sheila - You are right to be concerned about your children. Sit them down, maybe even with your step-dad, and have an honest conversation with them. I think kids appreciate being kept informed. It will be better for all of you (especially later) if you can talk now. You will need it for the foundation of so many questions later. You will remain in my prayers. I'll contact you. Karen

My father was diagnosed with p.c one year ago, he had surgery the tumor was in the tail of the pancreas after surg they did chemo every three weeks for 6 months . last treatment in feb. all counts we fine till july c19-9 went up we had scans ct,bone,all normal. then august 13th went to er for appendicitics they removed it then we find out the p.c was in the appendicitics. his counts are still going up , they started chemo three weeks ago we will try it again., they also started him Tarceva. he is so tired this time around just has no entergy ( the last time he did chemo he did o.k) .. the rash is driving him crazy it is right were the doctor said it would be head chest back .. just wondering how long does this rash take to go away and is you'll have the tiredness with this medicine

I'm a 35 year old female. I was diagnosed with inoperable, stage IV pancreatic cancer (mets to liver) the beginning of August. I have been fortunate and haven't had any problems tolerating the chemo and have now been on the Tarceva for about 3 weeks. I did get the rash (through my hair, face, back and neck) but have heard many times that this is a sign that it's working, so I was happy to see the breakout. It is uncomfortable at times though. I have not had any other side effects so far.

My mother just got the horrible news today that she has pancreatic cancer. She saw her father die of the same disease 30 years ago and she has always lived in fear of cancer. She is 62 and very young and active for her age. We don't know what type or stage the cancer is as we are waiting for her to see a specialist. I don't know if I am strong enough for what lies ahead. My daughter passed away 2 years ago this Sept 23rd. I haven't come to terms with her passing yet. The worst part that I remember when Grandpa had this cancer was seeing him waste away quickly before my eyes. I don't want my mom to go this way! I am afraid of what she might experience in the time she has left. She is confused about what to do. She doesn't want to suffer through chemo. Her symptoms are upper right abdominal and back pain, weight loss, and fatigue. She says she hasn't felt good for almost a year. I feel so helpless. Gi Gi

Dear Gi Gi, First of all, I'm so glad you're reaching out for support. I'm a cancer survivor, and wouldn't have made it without help from my parents, siblings and child! I know from experience that all the information out there can be confusing and/or conflicting. I also know that most oncologists are unlikely to try any treatments outside the clinically proven protocols. If you and your mother are given the "There's nothing we can do for you, get your affairs in order" speech, PLEASE PLEASE call and speak with Dr. Ben Chue, an oncologist at the Seattle Cancer Treatment & Wellness Center. By way of background, he has successfully treated many, many women with a specific type of recurrent breast cancer by using Herceptin -- SEVEN YEARS before its recent announcement as a clinically proven treatment. Recently Dr. Chue has been trying a new treatment for pancreatic cancer (using drugs common to oncological practice , but in different combinations and lower doses over a longer period of time) and has had amazing success. One patient who was highly jaundiced and brought in for his first treatments on a gurney is now walking under his own power. Another pancreatic cancer patient, a teacher, has actually returned to work! It sounds too good to be true, but I know from experience that Dr, Chue is willing to take calculated risks that other oncologists are not. It's often only when patients feel they have nothing left to lose that they come to see him. I have witnessed him giving hope to many, many people. He is highly intelligent, has immaculate credentials and also happens to be a very nice, humble man. His colleagues include naturopaths, acupuncturists and other therapists who do amazing things to help patients feel their best during treatment. If you'd like to know more, please call the Seattle Cancer Treatment & Wellness Center at 206-292-2277. Best of luck to you and your mother!

Thank you Sylvia, My Mom went in for surgery to put a stent into her bile duct, but it couldn't be done because she has a massive tumor in her stomache they didn't know about! She is having a lot of trouble eating and the stent was supposed to help increase her appetite. I will tell her about Dr. Chue. Seattle is not horibly far from where we are. Thank you for your help and concern, Gi Gi

I do not know if this is of any help but it may help your husband for a short time. There is a newer drug out called Tarceva that is being used for non small cell lung cancer and pancreatic cancer. If you search this site under tarceva you will find some discussions about it when used for patients with advanced lung cancer and from what I have read, it is for that case as well as advanced and inoperable pancreatic cancer. My mom is starting it next week. I pray for you and your family.

Marianne- We struggle with this a lot in my mom's treatments. I struggle with the balance between the treatment and the quality of life. Are we curing her or killing her? You always have the option to have a say in your own treatment plan. The risk of cutting down is that it could be less effective. Just make sure your dad is open with the doctor(s) about his side effects he is having. Cutting back may be the best option or maybe getting a second opinion is a value. I strongly believe that if your physician does not have "time" or interest in discussing all this with you and your dad then you can find a smart caring doctor out there who will. Ask your doctor about a drug named Tarceva...new in pancreatic cancer treatment. Mom is supposed to start next week. We are still researching the side effects and I have lots of questions for the doctor at the next visit. Good luck and take care. May you find angels to support and guide you along your journey.