Five In Family With Pancreatic Cancer!!

I lost my Dad in 2001 to Pancreatic Cancer, he was so far gone, that he couldn't have anything except pallative care.

This is the most heart wrenching disease out there!

I lost 2 Uncles and My Aunt. They had a bit more time, yet with the chemo, and My Aunt had the whipple to make 1 year.

Now my younger brother just was diagnosed with PC Stage 4 Mets to the Liver. He's young, young family and I am in total shock!!

I have stayed on with the Pancreatic Network since my losing my Hero, my Loving Father. Not much has changed, other than more clinical trials. My brother is not a candidate for surgery, since his mass is in the middle of the pancreas about 2.5 cm., Plus 3 spots on the liver. He has gained weight and had 4 chemo treatments so far. Yet, they cancelled this one due to platlet count, and want to do another scan this week. I heard that pineapple and sesame oil will bring the platlets up??

I am in shock, denial, and so Angry at this Disease!!!

Does your family have history of other cancers too?  Colon polyps in large numbers?  See if a major hospital in driveable distance has genetic testing.  There are some conditions including FAP and Lynch/HNPCC associated with some types of intestinal area cancers in families.  Any family member that has any change in bowel movement should be checked too.  Maybe some doc will agree to ca 19-9 values though can be false neg/pos.  find a top doc, top nci center in pancreatic cancer and get some advice fast.  

So sorry to hear about your brother, i hqve the same a mass on the panrias with mets to the liver and nodes, i started on a clinicl trial folfirinox last november since then ct scans have shown that the pancratic mass has shunk 30%.

There have been 3 in my family my Dad, Grandmother and now me.

please dont give up hope, how is your bother dealing with it, i truly believe that if he can stay active and have a positive outlook it helps a lot.

take care you and your brother are in my prayers - Sheann

I am so angry also having just lost my wonderful husband, so full of life and adventure!  If we get doctors to become more aware of early detection we can save more lives! especially if you are genetically predisposed such as your family. I am recommending MRIs of the pancreas every other year for those who are suspect or have relatives or type 2 diabetics.  What do you think?  Women have mammograms, why can't we have more preventative for PC?!!!

Hi, I'm so sorry to hear how this cancer has affected so many of your family members.

My husband has pancreatic cancer and chose to participate in a gentic sutdy here in Toronto Canada. Here is the link.http://www.zanecohencentre.com/gi-cancers/diseases/pancreati

Since I do not know where you are from I asked where someone could go if they were in the states.  The response was 'She could be referred to any genetics clinic in her area' but they also offered the name of Johns Hopkins. 

 I can tell you that our entire family has gained a sense of peace since participating in the study. Even the people who were estranged from the rest of the family were willing to put family issues aside and sign the medical releases.   

I explained that our own personal goal was to look for ways to help ourselves but most importantly - help our own children and the future generations to come. That the hospital would have everyones information - and should any one of our children or grandchildren be in this position, then they would know where to go for help and a complete family history. 

I can tell you that they will tailor chemo & treatment if the family also has a history of the breast cancer gene. Several women in my husbands family have had breast cancer - and several have had colorectal cancer.  All the ladies with breast cancer had all been tested (negative) but their results had never been put in one place until now.  My husband has also now been tested for the breast cancer gene (negative) and now his aunt has also been tested for colorectal.  Knowing my husband does not carry the gene for breast cancer has been a huge relief. Hopefully they will find the pancreatic gene if one exists. At minimum, getting a complete family history of cancer has brought for relief and discussion about diet and lifestyle for ourselves and our children.  

I hope this helps. God Speed. 

 Annie1963

Hi, i have done a genetic study with mount sinai in toronto, i do hope that your husband is doing well, is he on a clinical trial, i have been on folfirinox since november - every two weeks, 16 treatments, at the moment i am on a six week break, severe neuropathy, last scan in june showed a 30% shrinkage of the pancreatic mass, scheduled for another scan in august. I tried to access the link you gave me but for some reason was unable to.

My prayers are with you and your husband and i hope for the very best for all of us. Sheann

I'm so sorry to hear your story. I know the peanut skin is very effective way to keep your platlet up because I've been using for a year. God bless you!

Hi,  Here is the link again.

http://www.zanecohencentre.com/gi-cancers/diseases/pancreati I have pasted it from the website rather than from a previous email.  Hopefully this will work. 

My husband was diagnosed July 2011. Did trial with Abraxane and gemicitabine.  Shrinkage of 38% Yeah!  But the neuropathy became to much so he is no longer taking the trial combo.  He was switched to Gemcitabine then to 5FU via a portacath because he was not responding.  His next catscan is in about a month or so - don't have the schedule in front of me.  His quality of life is much better now because the 5FU does not have so many side effects.

What do you do for the neuropathy?  Hubby has been drinking alot of Gatorade (has potasium), uses liquid B12 drops under his tongue and liquid magnesium.  We were told to use the liquid by another patient because the capsules can be hard to digest.  Don't know if it all works, but he's doing it anyways.  Oh yes, he's also taking gabapentin. 

Got to go now ....  take care.  :-)

annie1963 

My husband also did the Mount Sinai study.  Like my earlier post said, we were happy to do it.

Hi I just tried the link - it doesn't work again. Try the copy and paste method.  Perhaps the website is blocking it?