Pancreatic Cancer

On 4/28/2005 Karen p wrote:

I am new to this board - my husband was diagnosed with stage IV non-operable pancreatic cancer in March, 2005. He is 57. He presented with what was initially diagnosed as diabetes in November, 2004, and treated incorrectly for this disease. His abdominal pain continued and increased until it was unbearable. Finally, after admission to the hospital, and a CT scan, it was clear: a 12cm tumor in his pancreas, with masses in his lymph nodes, outer stomach lining and liver. A needle biopsy on his liver was performed to confirm the diagnosis. He started chemo a week later, which he's had for the last six weeks. Its been terrible. He's scheduled for another 6 weeks of chemo starting May 9, but we're considering bypassing it. At this point, he can't take anything orally because it comes back up 30 minutes later. He has a pic line and gets two liters of liquid diet every night through the pic line. I also admister morphine as needed through his pic line - and he is up to 4 morphine patches. We are trying to keep him comfortable and out of pain. Its been a struggle dealing with this, especially with our children at home: 10, 11 and 13 years old. Our 23 year old moved home to be with us. My question - is it a good idea to keep him at home as he progresses to hospice? Will it be too hard for our kids? Any comments are appreciated.

i just found this web site and i am in the same situation

i have small children 12, 15 we have stopped treatments and went to hospice and it scares the hell out of me.

i see you sent this message quite some time ago i am interested in how your situation turned out

thanks

Bethinne:

I am reading your message and my heart goes out to you.  We lost our dear husband, father, brother, uncle and son to this terrible disease on August 1, 2005 - less than five months from when he was first diagnosed.  He gave it a good, strong fight, though.  We knew it was difficult news from the first day.  Dale chose aggressive treatment, and fought to be on his feet everyday.  Some days were just too difficult for my strong husband, though.  As his wife, I insisted that he share the prognosis with the family.  Although the doctor never gave us a timeline, we knew it was serious, so about 6 weeks into treatment (after the diagnosis), we sat the kids down and had a heart-to-heart.  They will tell you today, it was a hard day for them, but they will also tell you how much they appreciated be part of the process.  Each child has reacted differently to his death - - part of their own spiritual growth - - but we have muddled through pretty well.  Dale is still very much a part of our daily life.  We laugh when we think about how much he would have enjoyed this or that; we cry that he's not with us to share the experience; and we say "hello" "goodmorning" and "goodnight" to the multiple pictures around the house.  Our middle daughter has taken Dale's favorite antique desk and made it into a Dale shrine - that's her way of dealing with the grief.  

I can't tell you that hospice is easy - its not.  But the caregivers who were there for us helped.  We were officially in hospice only one week before Dale died.  He was at home, surrounded by his kids and me (and lots of friends during the days) - and when he died, it was in the middle of the night next to me.  His spirit filled the house.  We have always felt honored to have had him with us until the very end.  The hospitals were so sterile.  Home is where we should be when we breathe our last breath.

I suggest you check our PanCan - a truly important advocacy organization for continued research on pancreatic cancer cures, treatments and prevention.  www.pancan.org.

Enlist your friends and family to surround you with love and support.  Your most important roll now is to help your husband pass with dignity and to help your children say goodbye.  These are not easy times for you, but you will remember them with great honor.  We are blessed to be there at the birth of life; it is an equal blessing to be there as the candle of life is extinguished. 

Post again and I'll respond. 

Hello Marian,

I am a white female 45 years young who was diagnosedMaech 17 with Pancreatic Cancer! I was so suprised...as I have always been very health otherwise. It is true that for the most part this disease hit's older adults in the 60's and 70's however I did not hear that this was a disease for Americans of color. I had what was called the whipple surgery. my cancer was self contained at the head of the pancreas..which made it hard for the Dr's to reach. Removing a portion of my stomach and the tumor was needed to have a fighting chance at surival. I am 7 weeks post op now..and will begin chemo- and radationearly next month a five-six week treatment every day.as for your sons friend and his lymph nodes, 1 of mine came back positive out of 20 on me....I also did not have diabetes untill AFTER my surgery. Tell me more about this young man..and perhaps I can help him as others has helped me spiritialy,and emotionally. Ty Hoysradt

On 1/6/2004 Marian B. wrote:

My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian

On 1/6/2004 Marian B. wrote:

My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian

My goddaughter is 44, sbfemale, w/a 7 year old son.  She does not have diabetes.  She was a smoker, but not a heavy smoker.  I am so sorry to hear about your son's friend.   This is very hard. 

 Mary

Your email is encouraging to me.  I have a close friend that was diagnosed with PC in February, 2007. She is on Tarceva with Gemcidibine.  Is everything going well for you now?  Her's had gone to the liver also.  Please email back.   Mary

     Best of luck.  The best thing you can do is offer strong support for the patient.  I know from experience.  I am 45year olds old and a mom of two. I have been fighting pancreatic cancer since 2000.  I am going well and continue treatments every three weeks.  I think it will be a never ending story. 

      It can be quite a shocker with that diagnosis.  But I have had four surgeries to correct the problem.  I had the largest tumor my doctor had ever sceen measuring about 1 1/2 fists.  So it they can keep me ticking there are many possibilities for everyone else.  I think half the solution is the doctor and the other half is patient determination.  By far the thing that saved me is all my family and friends.  They were determined that I would be OK .  Now I just view my self as a "work in progress."  I am still fighting five tumors but I don't worry.  You get used to them just being a part of you. 

     My original doctor thought I would be dead within 2 years.  I wasnt hard to imagine that I got a new doctor.  Currently I am a Moffitt patient in Tampa.  I love my oncologist.  Just trust yourself and decide who is the best doctor to map out your gameplan and follow the instructions to the T. 

     The best thing to do for your friend is to keep them positive.  Everyone has a pitty party every once in awhile but mostly you need to keep positive and don't let the cancer be the main focus of your life.  Enjoy every day and always know there are more who are sicker than you.  I also liked having a cancer buddy who I could compare notes, emotions, and health with.  PanCan offers support for patients and caregivers.  They are wonderful.  Give them a try.  They have educational material and also contact people who can give you advice.

Toodles

Beth

My Mother was also diagnosed with Ca. Pancreas last year in July. She has taken a round of Chemotherapy and a Combo treatment of IMRT with concurrent Chemo (Gemzar). Her tumor is unresectable. There are many treatment options available which can buy lot of time. Gemzar for Chemo and a new drug approved last year for Ca. Pancreas called Tarceva are the most promising treatment options available.

-Anandh

Hi Marian, Im sorry to hear about your sons friend.  I dont know much about US Im in Scotland, I had PC last June it was a rare type - neuroendocrine in the tail of the pancreas and I had an op to remove it.  There didnt appear to be any spread so I havent had any follow up medicine. There are good stories out there! 

Do you know where in the pancreas and the size of the tumour/s involved, are they planning to operate? I recently read that over here they can do a High Intensity Ultrasound that delivers and kills the cancer right where it is it is usually used in chordomas of the spine but can be used to help relieve the pains associated with pancreatic cancer.  It is only available here privately the web address for it in the uk is http://www.hifu.cancertreatment.co.uk/  there you may be able to read and see if it may be suitable.  I also visit a very useful site in the uk http://pancreaticcancer.org.uk its very informative and you can meet others and discuss treatment/surgery.

Wishing him all the best for his treatments,

Lynn

On 10/4/2005 gi gi wrote:

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

Gi Gi,

 I sympathize with you.  First it was my grandmother, and then her son, my father.  My father foundout May 4, 2007.  We found through surgery that it had already spread to his liver.  He is now at home with hospice.  We have already seen the decrease in body weight and the weakness.  Please remember that the process is about your loved one, and you must do what you can to help him or her through this terrible journey.  My dad has good days and bad days.  Sometimes he has water, ensure or boost.  Other times he wants nothing.  The hardest part is seeing what the morphine is doing to him.  He is in a fog that may never lift.  My dad has always been articulate, logical, and decisive.  He is now anything but these three qualities. 

Prayer helps, as does patience.