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SHELLEY IN AR


Updated Journey for my dad and my family ... Current... male age 66 and 9 months...

My Story of my Dads PC diagnosis...

My dad just turned 65 in April 2012 and retired from his job as an electrician for 30 years at the local State University on June 31, 2012.

July 30, 2012 Adanocarsanomia Stage II diagnose confirmed , 2.4cm mass to head of pancreas with neck and body involved and compression of the SMV and portal vein.

My mom is alive and very involved in this story as well, She turned 65 in May of 2012 and retired from her job as well. she is a great caretaker however she is much less knowledgeable about the medical world and not very assertive when it come to doctors. She would have accepted what she was told and had no idea there were options.

My parents have been married 47 years last week

January 2010---My dad has never been sick in his life until January 2010 when he developed a sudden onset of diabetes type II at the age of 63. he started seeing a PCP in a large group of PCP doctors which all work for our local hospital in a round about way. my parents long time PCP just retired and this new doctor come into the practice and took over his patients. did not really matter to my dad because he was never sick anyway..

July 2011--- Dad hurt his back at work and was having a lot of trouble lifting his right leg and pain. No pain meds because he just does not take them.

August 2, 2011--- My birthday, Dad has back surgery to repair rupture disc in back. Doctor says stay off 6 weeks. Dad is bored out of his mind and goes back on light duty 3 weeks later.

February 2012-- Blood sugar has become hard to control with Metformin and diet even though dad has lost 25lb over the past 2 years with diet for diabetes.

April 17, 2012-- I went with my dad to see the PCP because his diabetes had become uncontrolled with his metformin. I went not because my dad was not able to take care of seeing the doctor on his own but he is just not good at actually telling how much trouble he is actually having. He always acts like its really not a big deal and I wanted to doctor to understand. The PCP never even really looked at my dad, he spent more time explaining to me what diabetes is on an elementary level, as if I were stupid. Mind you I have an advanced graduate degree from college. He did not examine my dad at all. he just said lets increase your metformin and see if that helps and I will see you in 3 months handed him a script and out the door.

June 17, 2012---in June my dad started having some pain in his right side and through to his back after meals and his urine was dark and stools got light yellow color

June 26, 2012--- PCP thinks dad has gallstones with symptoms of right upper quad pain after meals and notes he is jaundice and sent him for a CT scan, telling him that most likely he would have surgery that night to take out gallbladder. CT came back normal on every organ except for enlarged spleen. Blood work showed elevated liver enzymes.

June 27, 2012--- attempted a different test on gallbladder function which was unsuccessful

June 29, 2012-- local GI doc appt with more labs and scheduled an EGD/Colonoscopy. all the time my dad is getting sicker.

July 2, 2012-- EGD and Colonoscopy are done and GI doctor reports Both are normal

July 4, 2012-- CA 19-9 comes back at 700, dad continues to get sicker, no apatite, feeling full, pain after meals. GI Doc scheduled ERCP

July 6, 2012 -- ERCP, tells us nothing but there is an obstruction of the bile duct, could not find tumor, could not stent the bile duct. took brushing of pancreas head. then he says I think he has cancer of his pancreas, he states 'if it looks like a duck and quacks like a duck, its probably a duck' then sends dad to radiology to have a tube inserted through his right side through the liver and past the bile duct to drain the bile from the liver due to his failed attempt to put in the stent. this was done with no anesthesia and my dad was in so much pain and so sick.

July 10, 2012-- have to use a wheel chair to get dad in the PCP office for appt because he is so sick and weak. THE PCP LOOKS AT US AND STATES 'well the brushings show no cancer.... BUT it sure seems like that is the case, THE TUMOR MUST BE SMALL BECAUSE IT WAS NOT PICKED UP ON THE CT SCAN AT ALL.'

PCP continues with 'PC IS VERY AGGRESSIVE AND NO ONE SURVIVES, I ESTIMATE YOU HAVE ABOUT 6 MONTHS SO I SUGGEST YOU GET YOUR AFFAIRS IN ORDER. THE GOOD THING IS YOU WONT HAVE TO SUFFER LONG BECAUSE IT TAKES YOU REALLY QUICK. I WOULD NOT SUGGEST ANY TREATMENT BECAUSE THE CHEMO WILL ONLY MAKE YOU SICK AND WILL NOT CHANGE THE OUTCOME. WE MIGHT WANT TO START YOU ON HOSPICE'

My dad looked at him and asked 'SO YOUR TELLING ME I AM TERMINAL AND THERE IS NO HOPE FOR TREATING THIS??' PCP DOCTOR SAYS IN A VERY HATEFUL TONE, 'THAT'S WHAT I AM TELLING YOU.' PCP adds 'LOOK AT STEVE JOBS, HE HAS TONS OF MONEY AND HE COULD NOT BE SAVED'

July 13, 2012-- GI doctor number 3 in the same office as GI doc #1 and GI Doc #2 decides he wants to do an endoscopic ultrasound and attempt to biopsy. GI doc #3 says he thinks he sees a tumor at the pancreas head that is about 2.5 cm and he did biopsy certain he would have some answers and for us to call the office in 3-4 days for results. So we wait,

July 18, 2012 --- again biopsy shows no cancer. at this point my dad has lost 25lbs due to not being able to eat from being sick and being put to sleep so many times in the two weeks.

July 23, 2012-- we are at MD Anderson seeing doctors and having test. Our first visit with the surgeon at MDA he is not even sure but what it might just be pancreatitis due to all the trauma over the past 3 weeks. However, CT at MDA does indeed show the tumor at 2.4cm and the endo ultrasound biopsy comes back as adenocarcinoma, also diagnosed with pancreatitis due to all the trauma to his pancreas over the past 3 weeks from procedures.

Inoperable at this time but shows no spread to local lymph nodes and appears to be contained to the pancreas (stage II per oncologist at MDA)... MDA oncologist says we can come home and do chemo and see her in 8 weeks to see if the tumor responds. They give us hope that if it does decrease in size and back off the SMV and Portal Vein he might be able to have surgery.

August 2, 2012--- My Birthday again,--- However before we can leave MDA and come home for chemo first we have to drain the abscess on the liver at the site where the biliary cath was inserted (at our local hospital) and get the infection cleared. When the culture comes back on the abscess it is determined STAPH.

August 4, 2012 --- we return to Jonesboro, AR on flagl and leviquin

August 15, 2012 -- see local oncologist, he agrees to give chemo ordered by oncologist at MDA, Abraxine 125mg, Gemzar 600mg every other week. I wonder if this treatment is aggressive enough...

August 22, 2012 -- first chemo treatment, Gemzar/Abraxine

October 23, 2012 -- sitting in front of the surgical oncologist, after three close calls with near death from sepsis due to infected PTC tube, FINALLY surgeon says, 'why is that still in there, I said that could come out months ago.' I explain that his interventional radiologist team refuses to take it out and put in a stent unless life expectancy is less than 6 months. He is frustrated and calls in a gastroenterologist and has the stent placed via ERCP and tube removed. Praise GOD!!!! Fantastic Gastro doctor, My daddy is one happy man when he wakes up and that tube is no longer protruding from his side. Gastro doc says it was a piece of cake and that if it ever got blocked he would just go in and flush it or place another stent over this one and open it back up. No more PTC tube ever!!

December 13, 2012. Gemzar/Abraxane treatment # 9. CA 19-9 has dropped from 673 to 67.

December 18, 2012-- MDA reevaluate with surgical oncologist, says he could operate but feels not in best interest. says will be debilitating for dad. Says he does not do surgery when must remove entire pancreas, causes brittle diabetes, said he would not have surgery if he were in dads place. States 'this cancer always comes back somewhere in time anyway.' Medical oncologist and Radiation oncologist have reviewed case and think IMRT radiation with Xeloda chemo is a positive next step for dad. Radiation oncologist explains IMRT radiation and how it is escalated dose radiation, much higher does than normal radiation directed to the tumor and less radiation to the surrounding tissue and organs. Both are convinced from new scans this week that there is still NO METS.... all cancer still contained to pancreas head/neck, and body. Radiation oncologist very confident man, speaks much hope and optimism. States he believes he can accomplish the same thing with this treatment as one can with surgery without the trauma/recover/complications/risk involved with surgery. He states he feels that he can give dad long term survival, that his goal with this treatment is curative. Wants to start ASAP.

January 14, 2013-- Houston, MDA, first radiation treatment started taking Xeloda 1500 mg in the morning and 2000 mg at night with meals. Xeloda is oral form of 5FU and was explained that it will enhance the effects of the radiation.

January 15, 2013-- meet with radiation oncologist, discussed how would we know this was working. His reply 'because it will work' He explained that no diagnostic test will be done as far as CT scan or CA 19-9 during this time because radiation will irritate all the tissue and 'things in there will look much worse when we finish than when we started' CA 19-9 Levels will rise as the cancer cells start to die and shed into the blood stream. 6-8 weeks following the last treatment then we will be able to do new scans and see what is going on. 'what we should find then is that the tumor will be just scar tissue. then there will be no need for additional treatment unless there is a reoccurrence at some point.' and he talked about several patients he has treated that are now 5+ years out with no reoccurrence.

February 3, 2013-- finished week 3 of chemo radiation (half way done) with minor fatigue as only side effect. (yesterday he washed AND waxed his truck) No weight loss, nausea, vomiting, diarrhea, loss of appetite, or mouth sores.

4/4/13-- New scans/labs, NO evidence of METS, tumor regression, size now 2.4cm x 7cm, tumor remains isolated to pancreas, no treatment at this point, recheck in 8 weeks. CA 19-9 84

6/17/13-- New scans/labs, NO evidence of METS, tumor remains isolated to pancreas, continued regression of tumor size now 2.1cm x 4cm. remains off all treatment, CA 19-9 64. Restaging in 3 months.

9/16/13-- New scans/labs, NO evidence of METS, tumor remains isolated to pancreas, continued regression of tumor size now 1.7cm x 3cm. remains off all treatment, CA 19-9 64. Restaging in 3 months. Medical Oncologist at MDA says dads response is a 'Miracle'...

1/13/2014 -- CT scan of abdomen and pelvis shows no change, disease stable, CT of chest clear, no cancer. No METS to any other organ. Pancreas has atrophied and most likely tumor as well. CA 19-9 still @ 64. Labs are normal.

Started on Creon for issues related to many bowel movements every day. Creon worked after first dose been taking 2 weeks and seems to have taken care of the problem. Oncologist explained importance of taking metformin every day (dad does not like taking meds) She explained to him research has show that Metformin can slow growth/spread of PC. Maybe now he wont argue about taking it!!

MDA Oncologist says dad is the new poster child for successful management of pancreatic cancer!! Will continue clinical observation and return to MDA in 4 months for new scan/restaging. I feel she is genuinely surprised and thrilled with the control of disease from the IMRT with Xeloda. It has been 1 years since radiation treatment started so 10.5 months with no treatment and no sign of active disease. Pancreas is just basically a dead organ in the belly now and we hope the tumor has turned to scar tissue.

When we started this fight for life my dads health was so bad I did not think he would make it 6 months. The fight is continuous, its tiring, but worth every minute of it for me to look back and see how many wonderful days he has experienced good health and remained active and pain free. its been 18 months since diagnosis, the first 4 months were hell... but I can honestly say the past 14.5 months have been really wonderful and semi-normal for our family since this battle begin. I don't know what the future holds for my dad, but I dont know what it holds for me either!! One day at a time is really all you can do on this journey, none of us are promised tomorrow!! I thank God every day for his love and compassion, for the mercy he has shown us, and for giving us another day. I praise him for his direction, leading us where we needed to be! Early on in this journey it was hard for me to hold on to my faith when I felt my world was falling down around me, God has sure changed me over the past 18 months!


Posted 01/23/2014 12:51 am by SHELLEY IN AR
E-mail Address: sailor.shelley@yahoo.com

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