stage 4 pancreatic cancer

I am a endoscopy nurse and also a caregiver to my father, age 52 and completely healthy other than stage 4 pancreatic cancer. This all started in November 2012, he c/o abdominal pain for 2 days after eating. Went to ER, diagnosed with pancreatitis. CT showed 2.7 cm mass on head of pancreas. No other masses noted. Underwent endoscopic ultrasound Dec 4, 2012. Mass measured 1.8 cm, no lymph node involvement, liver was clean. Met with surgeon December 17, 2012, was told he was very lucky and was operable. Had a biliary stent placed on Christmas eve due to jaundice. So we're all hopeful and feeling good. Whipple was scheduled for January 9, 2013.  An hour into the surgery the surgeon informs us that it has spread to the liver. Oh BTW PET scan was negative. Dad started Folfirinox Feb 4, 2013. So far has had minimal nausea and has only vomited twice. A baseline CT from Feb. 1, 2013 no shows "innumerable liver masses with the largest measuring 1.6 cm and pancreatic mass measuring 3.2 x 2.6 cm" I know for a fact CT's are not accurate with measurements and I am hopeful that the folfirinox will help slow the progression and hopefully shrink the masses. I'm getting married in 5 weeks and I'm not ready to lose my Dad. He has a great attitude and is determined to win! I just need some support from people in the same boat. I guess I'm really just asking for someone to share their story of success with me. I will definitely be joining the fight and pushing for more funding and research.

Take heart. Yes, CT scan is only as good as the radiologist who reads it.  Also, your Dad might be able to have whipple at a later date  Yes, fight for funding and get involved with Pancan. They are a great source of inspiration and information. Also, go to the best hospital you can. That is key. My husband has had it since 7/11 and with only chemo and radiation his CA-19 is 11.  Keep praying.

On Feb 06, 2013 10:55 PM daydreamer19 wrote:

I am a endoscopy nurse and also a caregiver to my father, age 52 and completely healthy other than stage 4 pancreatic cancer. This all started in November 2012, he c/o abdominal pain for 2 days after eating. Went to ER, diagnosed with pancreatitis. CT showed 2.7 cm mass on head of pancreas. No other masses noted. Underwent endoscopic ultrasound Dec 4, 2012. Mass measured 1.8 cm, no lymph node involvement, liver was clean. Met with surgeon December 17, 2012, was told he was very lucky and was operable. Had a biliary stent placed on Christmas eve due to jaundice. So we're all hopeful and feeling good. Whipple was scheduled for January 9, 2013.  An hour into the surgery the surgeon informs us that it has spread to the liver. Oh BTW PET scan was negative. Dad started Folfirinox Feb 4, 2013. So far has had minimal nausea and has only vomited twice. A baseline CT from Feb. 1, 2013 no shows "innumerable liver masses with the largest measuring 1.6 cm and pancreatic mass measuring 3.2 x 2.6 cm" I know for a fact CT's are not accurate with measurements and I am hopeful that the folfirinox will help slow the progression and hopefully shrink the masses. I'm getting married in 5 weeks and I'm not ready to lose my Dad. He has a great attitude and is determined to win! I just need some support from people in the same boat. I guess I'm really just asking for someone to share their story of success with me. I will definitely be joining the fight and pushing for more funding and research.

Think POSITIVE....there are some rough times ahead, but there is some comfort and hope (on this site alone)!

I too am an RN - my dad was diagnosed with stage 4 PC in April 2012.  We, too, believed dad was going to have the whipple and when the surgeon found liver mets everything was cancelled.  He was given "months" to live by the oncologists.  He started chemo and is now on his fourth combo of meds, due to reactions and one alone not working.  Weekly, when he gets his tumor marker readings, its a roller coaster of emotions.

We have been to California, locally in Oregon and Washington to get second opinions.  I have also reached out to some doctors noted in these blogs for record reviews and other opinions.

Best advice I can give at this point is to NEVER GIVE UP.  If dad is willing to fight and you are willing to help - keep going!  Also pick up the book Ride of My Life by Bob Brown - see his page online too.  He is a fantastic resource and you can even email/call him. 

Good luck and keep us updated!

Hi Daydreamer19,  Same thing happened to my mom diagnosed with PC in Oct went for whipple in Nov 2012 saw in liver and because of infection after infection she still has not had any chemo.  Hopefully will start in March 2012 but I hope it will  not be to late.  Keep the faith I really think your Dad will be at your wedding!

 

 

 

Thank you all so much for the support and for sharing! Just an update dad is on his second cycle if folfirinox, he does this every other week, and he's wiped out but only vomited once on the first cycle and has not had any vomiting with this cycle! No other side effects at this time ! Plus his blood counts stayed good in between cycles! 3 weeks till my big day and I feel that my Dad is doing great!

firstly congrats on your wedding fast approacing. and so sorry about your poor daddys pc! my dad was diagnosed in june- been so upset after his unresectable surgery. my world crumbled. was due to get married may 2013 but we went for it in december 2012 as doctors are never posirive! just hope you remember to have a first dance with your daddy.. did and we both cried all the way througj xxx

It is a very cruel disease that's for sure. I'm glad you were able to have your dad at your wedding but I'm sure you want many more years and milestones with him too! Keep your head up. Medicine is advancing each day!

I sure do! want many many more years not jus photos of him giving me away.. its tough been through the whole wedding happiness and bitter dweet feeling.. its tough but just enjoy your big day! 

Is your daddy a smoker by any chance? xxx

I'm already struggling with the bitter sweetness but I'm really happy he can be here for it. What's worse is I'm an only child and I desperately want him to meet my babies so I've put a rush on getting pregnant as soon as the wedding is over. No he's not a smoker. He doesn't fit any of the risk factors. Otherwise entirely healthy, worked out everyday and had a healthy weight. Now he's down to 141# from 158# but gained a pound this week.

awww :( were in the samw boat! trying to fall pregnant!! everythings mad right! like your trying to fit a whole life time of things to do into 3-6months !!!

My dads brother had pc passed 3 months ago. he survived 9 months fem when he got diagnosed:( my daddy is so scared he is only 58! my uncle was 59! my daddy was otherwise fit and healthy no probs whatsoever. 

 

Are you serious?  your dad is not a smoker!!! oh wow!! how interesting what never? wow! how about familial pc?  or any cancer in the family? xxx