Not Getting Enough Information

Hello. my mother-in-law was diagnosed with pancreatic cancer in April 2007. In December of 2006 she had her gallbladder out due to a 41/2 gallstonne and what they thought caused her extreme jaundice. After the surgery she was still jaundice. After many test and stints to open her bile duct they felt she may have pancreatic cancer. they debated on the Whipple procedure and finally did it in April 2007. It had spread to 3 lymph nodes and he could not get all the head pancreatic cancer. She finally began Gemzar/Tarceva in September. Her oncologist said it is a miracle she was able to have the surgery. She is supposed to have the Gemzar once a week for 3 weeks with one week off. that has never happened because her white counts don't allow it. Two in a row is all she has ever had and that has only happened three times. Her cancer marker numbers are great but not sure if that means anything since they have never been high even before surgery. Her doctor says he is pleased with what the medicine is doing. i am very frustrated because I feel they are giving too much false hope. I know there are fluke people who have miraculous stories of survival but the real truth is this disease usually does not go away completely. they have now decided to give her a break from the Gemzar and if her Numbers are still good after a month they will just keep her on the Tarceva without the gemzar treatments. She has lost 60 pounds over the past year.
they say her weight has stabilized even though she will lose a pound or two every few months. I feel like they are throwing these treatments at her because there is nothing else to do. I just don't understand the point of putting her through the ordeal of treatment when they keep saying it is just to "maybe " give her some more time, but they have not said how much time she may have anyway. I feel they are sending the wrong message and when things do get really bad it is going to be such a shock. We have talked openly about this the statistics, etc. But when the doctor and nurse act like she is doing great what does that really mean? She is 78 almost 79. We just want her to feel the best she can and not sure pumping poison into her body is the best way to do that. I would really appreciate your feedback and stories.

Your message mentioned the surgeon was unable to remove the entire tumor.  If that's the case, the chemotherapy is palliative care only.  From what I understand, the main purposes of using it are to reduce size of tumor and therefore help control pain and other issues associated with PC.  The side effects of the treatments have to weighed against the discomfort and pain she may otherwise feel.  Also sometimes it does give the PC patient extra time.

I am a PC survivor.  My husband suffered terribly while I was going through treatment.  Sometimes I think the ones watching suffer most because they feel helpless.  But the experience I want to share is this:  My Father-in-law was diagnosed with inoperable lung cancer at age 75.  The doctors told him  he had 6 weeks to 3 months maximum to live.  He pursued every possible treatment, including an experimental therapy at Emory Hospital in Atlanta.  He was alive one year after diagnosis and still living on his own.  The treatment was never represented as a cure.  My brother-in-law asked my husband to go with their father for one of his check-ups at Emory.  When they got there, my brother-in-law asked to speak with the doctor without Dad in the room.  He insisted that the Doctor tell my beloved Father-in-law that there was no cure for his condition, that there was nothing else they could do for him, that he was dying.  It's true there was no cure, but  they would have continued the experimental treatment if Dad wanted it and continued to tolerate it.   The doctor did as asked, and my husband told me he saw a change in his Father during the conversation.  That was on Friday.  I spent Sunday afternoon with Dad, and he was very quiet, telling me he had a lot to think about.  My Father-in-law passed away the following Friday, one week after the doctor told him there was nothing that would stop the cancer.  My brother-in-law did what he thought was right, and my husband did not disagree with it  They both suffered along with Dad watching him struggle to go through the treatments.  I've always wondered if the doctor had just told Dad he was doing OK, or as well as could be expected, if he would have lived longer.  I know Dad wanted to live every day he could because he always held hope of a breakthrough.  The real question I will always have is if insisting the doctor tell Dad the "truth" was for Dad's benefit, or the benefit of those that loved him so dearly, who wanted to see the suffering end.   

Sorry for the long post.  Knowing what to do in these situations is difficult.  I hope your mother in law finds comfort on her journey, and that your family is able to find peace whatever the decisions taken.

 

  

 

 

my husband fought valiantly for 9 months against the pancreatic cancer that invaded his body. he did all the "right things" ie surgery, chemo, and radiation in the hopes that he would live longer in his newfound faith in Christ and love for his family and friends. in may, his cat scan was clear but by the middle of june, he had started to complain of back pain and by the 4th of july he started to have bloating and discomfort in his abdomen. this went on for almost 3 weeks. we had a cat scan that showed liver involvement and an ercp showing a tumor. the doctor told us he was dying but probably had several weeks to months left. it was as though the wind went out of jim's sails and less than two weeks later he was gone. i am grateful he did not have to suffer long, but it is true i think that hope helps us sometimes to carry on longer than we might have otherwise. but, jim doesn't have to live the rest of his life "looking back over his shoulder" worrying that the cancer would come after him... and neither do i. i am learning to live my life without him and looking forward into the future when i will be with him again. we all have to make really hard decisions sometimes..not really sure if they are "right or wrong". we just do the best we can and leave it at that. we love them. they love us. that's all that matters in the end. sincerely jimandkathy

I suggest asking the doctor what the prognosis is by staying on the chemo.  My Mom died in Nov. 2007 at the age of 74 after a 4 month battle with PC.  She tried Gemzar but she too could not have it every week due to her blood counts.  Her doctor was very upfront that PC is not curable but treatable.  She got to a point that she decided that she was more concerned with quality of life and wanted to enjoy what little time she had left.

 there is some helpful info at www.pancan.org.  It is the Pancreatic Cancer Action Network. 

We did and he said they don't know because every patient is different i am getting so tired of it