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My beloved went from diagnosis to crossing over in 22 days. Pancreatic cancer runs in his family. I worry about the 3 kids. Anyone else dealing with this as a nemesis? Anyone involved with activism due to their encounter with this disease?

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My husband passed from heart failure- almost 2 years ago. But my mom was hospitalized most of last month, and came home with the diagnosis of Pancreatic cancer that has spread to the liver and is causing mini blood clots- that are causing mini strokes. She has had one round of chemo. Thank you for this thread, as I'm too afraid to do a google search of what to expect with this. I am currently her caretaker at home. Every moment is a fear that I will find her dead much like I found my husband.

Dear Mod:

I am so sorry to hear about the loss of your husband and about this family history. Of course you are concerned with your children - may I ask how old they are? Also, if this isn't too private, was your husband Jewish. Statistics have shown European Jews could be more likely to be affected by pancreatic cancer due to a genetic defect, or so we were told at MD Anderson Cancer Center in Houston, TX.

I am not dealing with PC anymore, but my husband passed about 18 months ago, and of course I am still dealing with it emotionally. I heard that a 15 year old young man, whose uncle passed away from PC, had developed a blood & urine test that more accurately detects PC in the very early stages. I do not think, but do not know, if clinical trials have been started. I do know Intel sponsored this competition.

I do not have the heard to actively take up the sword so to speak, and become active in the PC community. I try to focus on ongoing research (Kanzius Machine) etc. etc. My step son has a chance of this, and cancer runs in his Mom's family and especially in his father's and grandparents history.

I am hoping there will be an early detection test for him, and for all of us, including my children who are not Jewish.We still have cancer in the family.

God Bless, and I wish you healing in your heart and your spirit.

Nancy

Hi grey eyes and Nancy,

I missed this discussion. Jud died of pancreatic cancer on Feb 24 after fourteen months. He had two grandmothers that he lost to PC, so some on each side. Interestingly the research centers we were at that are looking at history weren't too interested because they were one generation back but we did fill out long forms at Mayo and at Stanford. Jud had SBTR (guided radiation) at Stanford and I think it made a big difference in his quality of life which was better than most. Nancy, Jud has some Jewish ancestry, but again more than one generation back. I have asked the doctors everywhere we have done if Katie should be checked more regularly and they have all said "no." Anyone have any thoughts? I know there is nothing quite out there to check with.

I just heard of a new machine that will be at Mayo at the next several months and will pick up microtumors. This was not specifically for PC but I wondered if it will be useful. I am sure some of you will remember those
microtumors. They can't find anything because they are too small and then they just burst into action.

I haven't had the energy to do any activism work. The whole thing still feels pretty traumatic and that doesn't feel right for me right now.

I will have to go back and read more. grey eyes, I am so sorry for the continued trauma in your life and hope we can, at least be a place where you can come to unload. That sounds like so much to deal with!

Suz

P.S. I guess I did write on this thread. I have so many people on here who lost spouses to PC. I am hoping they will add to this. It is a horrible illness.

Dear Suz:

So sorry for your loss. The only thing our doctor at MD Anderson could recommend at the time was to see if Ken's BRACA2 gene was defective. It is a blood test and I think the cost was about $500.00.

I too have no energy to work "for the cause of PC". After I had breast cancer (thank goodness stage 1, no lymph nodes, only surgery and radiation), I felt no need to work for breast cancer research, etc. The only thing I could do now is give reassurance that a stage 1, no lymph nodes, with clear margins, etc. is has an excellent cure rate.

Right now I want to see if I can work with a local Lions club matching companion dogs to veterans. Even this might be too much right now.

I pray all those affected by PC and all types of cancer, etc. can eventually be helped by a test that can detect "markers" early on.

Steve Jobs (while he died from PC) had his own "reality" when it came to technology. If Everyone told him "x" could NOT BE DONE,  he figured out a way to do it, in spite of the "expert" advice.

This should apply to cancer also. As I have always said, if cancer was as contagious to all individuals as AIDS is, we would have either found a cure, or a way to extend people's lives in a different way besides chemo which not only kills the cancer, but kills the body too.

God Bless,

Nancy

 

 

Hi - I lost my honey to pancreatic cancer in June of 2011.  It will be a year tomorrow and I am dreading the date.  He was sick for almost 2 years with constant diahrrea but was treated for colitis!  Of course, it didn't help.  He was diagnosed in September of 2010 and lived 9 months after that.  It was terrible.  I wouldn't wish this cancer to my worst enemy.  He had to have surgery to reroute his GI tract so he could eat and his bile tube kept plugging up so numerous surgeries for that.  He had chemo - didn't help.  Then he had cyberknife radiation - shrunk the tumor but then the cancer moved to his liver.  Poor guy, he never had a chance.  He was 61, had retired and we were looking forward to travelling.  He lost over 100 pounds and he was skin and bone.  The cancer finally ate through his portal vein and the blood backed up to his stomach.  As fast as he could get a transfusion, it was coming out.  The surgeon suggested we let him go because he was starting to have quite a bit of pain over the pain killers and the next few weeks would have been terrible.  He has pancreatic cancer in his family and they were all around his age.  I worry also about our 3 kids.  I heard a test was being developed for early diagnosis - can't come quick enough.

eb,

That sounds particularly hard. Jud had fourteen months, had the cyber knife first. It helped the most. No chemo worked. He had one month that he felt reasonable and we went to Monetreal and the South of France. What a gift to get that time. Then it got really bad. He was 62. Both of Jud's grandmothers had PC, too. It is a horrible disease. I am so sorry about your husband...and mine...and all the others. Did you read the post above? We were always told it was too early for tests...not developed enough. I also heard that a recent study said that PC starts eighteen years before it really appears. Mayo is getting a machine that will pick up microtumors but if the tumors don't respond, I don't know it that will help.

Sending you my best wishes. This is a good place and just keep posting. The chat is a good place to meet people. If it is too fast ask them to slow down and tell the people there that you have something to talk about.

I keep thinking of the pictures of your husband and feel so sad.

Suz

Hello All,

I'm relatively new to this site, but not new to pancreatic cancer, since my wonderful husband died from it June 23, 2008.  He was diagnosed with it in March 2006, after three months of pain that was first diagnosed as GERD and then as an ulcer.  After the second trip the emergency room they offered him a CT and the mass on the pancreas was found.  He was stage 3, but inoperable because it had wrapped around the celiac artery.  He initially had six weeks of radiation and Xeloda, which temporarily stopped the tumor growth and the pain.  He then did several months of an alternative protocol (found on our own through Internet research, and not covered by insurance) that brought him back to feeling fairly good, which totally perplexed his doctors.  And then the pain started again at the beginning of 2007, and the alternative protocol couldn't be done while taking pain medication, so he started Gemzar and was back to feeling fairly decent by the summer of 2007.  

He decided he wanted to travel while he was feeling good, rather than be tied down with another protocol..... so, we traveled and he was elated for about a month, and then the pain slowly began again. He went on the patch and tried Gemzar again, but it made him too sick this time.  So he went on Hospice, but we still thought we could bring him back to feeling decent through alternative treatments, but it didn't work this time.  He was a squeaky-clean guy.... never smoked, drank, or did drugs.  There is no history of cancer in his family, and we thought we ate healthily, so why he got this awful disease is a mystery.... as it is with most people who get it.

Our daughter is a research scientist and has little respect for the research field in general because of the widespread inefficiency and corruption, especially when big drug companies are involved... which is how most research is funded. Because of her bad experiences with research I am unable to get enthusiastic about fundraising for research.  However, it is the only way treatments are discovered, no matter how corrupt the system is.

Thanks for starting this topic, A&M... it is good to connect with others who know what it is like to see someone we dearly love deal with this disease.  I couldn't have done it, nor have a life afterwards, if it weren't for my faith in a Creator who cares and provides support when we ask..... and I ask for that support every day!  Next Saturday will be the fourth anniversary of his death.  I have much to be thankful for.... especially my two children who have been very caring and helpful, and their families.  In fact, my son and his wife had their first child last Wednesday, so I look forward to being part of my new grandson's life.

I lost my husband Peter to pancreatic cancer on May 10. It doesn't run in the family. It started off as a lower back pain, and a year later he was gone. He was only 48. I'm 38, we have three kids ages 14,11 and 9. Just hearing the words "pancreatic cancer" can set off an anxiety attack. I am still reeling from this whole year...the doctors, the tests, the procedures, the chemo and radiation, ambulances, hospitals, hospice and then his death. It's all like a bad dream until reality wakes me up with a kick to my stomach.

Dear Camry -

      I know just what you mean.  It was a year on the weekend that I lost my husband and when I think about it I still feel the same way!  As I was told by my sister (who is also a widow)  "It doesn't get any easier, its just different."  I have anxiety attacks too and you stole my line when you said "Its like a bad dream"  a nightmare really.  And you still have three children to raise.  I wish I could say something that would help but I can't think of a darn thing.  All I can tell you is take all the help you are offered.  Somedays I can hardly get out of bed and when someone offers help, I take it.  I am 63 and my husband was 61.  We had been retired for about 10 years, thank God.  Your poor husband was so young!  And you are even younger.  Take one day at a time, that's all I can do and sooner or later your children will help you get through this.  God bless, Elaine

     

Has anyone read the book "Dream New Dreams" by Jai Pausch? I just started reading it and I had one of my anxiety attacks when she discussed when the doctor said they found a mass of her husband's pancreas. God did that bring back a flood of bad memories. I remember that moment in my life so vividly. It was when my life as I knew it stopped instantly. I don't know if I can read the rest of the book. Maybe it's too soon.

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