hilary's Journey:

Family/Friend: Pancreatic Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 6 years ago, Male, Age: 75, Stage IIB

  1. 1
    • hilary
    • Experience with Pancreatic Cancer
    about 6 years ago
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    Diagnosed

    Oh No

    It took 2 months for Dad to be correctly diagnosed... a trip to Mayo Clinic in Jacksonville, FL rendered the correct diagnosis within 5 days. It was confirmed after surgery 2 weeks later. Symptoms - no pain, jaundiced, blood sugar out of control, renal failure ... many of these were ignored and blamed on the hormone therapy he had been receiving for prostate cancer the months prior. (prostate cancer is gone... this is another primary cancer... not related) Dad was fortunate... though it didn't feel like he was lucky - he was eligible for the Whipple Procedure. Research online created a very dismal looking future... however, our experience so far (5 weeks post op) has been pretty good considering!

    1 Comment
  2. 2
    • hilary
    • Experience with Pancreatic Cancer
    about 6 years ago
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    Surgery

    Procedure or Surgery

    Dad had the Whipple Procedure - PPPD, pylorus preserved pancreoduodectomy - at Mayo Clinic in Jacksonville, FL. The surgeon removed his gall bladder, the affected part of his pancreas (the head), the bile duct and his duodenum. They stopped before affecting his stomach and liver. He stayed in the hospital only 8 days... and was gaining weight within the first month. Quite a different experience than what we were expecting based on horror stories online. We started slowly adding foods day 3-4 ... clear liquids followed by chunkier soups... and he was eating small meals (very small) the end of the week. Dad is 5 weeks post op now and regaining his energy, though not back to normal yet. He is eating more, and has felt HUNGRY (about 4 weeks post op). The recovery from Whipple is expected to be 8-12 weeks... so we are patiently waiting. There isn't anything you can do to speed this up - it is major surgery and takes time for the body to heal.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • hilary
    • Experience with Pancreatic Cancer
    about 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Dad started Gemzar Chemotherapy last week. Week 1: no issues until the evening of day 4 - he felt queasy over the smell of cooking food. Zofran took care of the nausea. Week 2: having checked his blood, Dad was close to being neutropenic (1300) ... Dr wanted to reduce GEMZAR to 80%, but lead Dr said 'no.' He received his 2nd treatment... felt really cold going in, he said. (any suggestions on managing this?) Felt nauseas on Day 3, but that was pretty much it. Tired... but who knows if this is from gemzar or whipple (he's now 5.5 weeks post surgery) Week 3: No Gemzar this week... white blood cells way too low. The dr said gemzar is still doing what it needs to do, even though he didn't get the 3rd treatment. She's worried he'll have a fever and need to be admitted to hospital er ... How long does Gemzar stay in the body? Any idea how long it will take for his white blood cell count to get back to good? Like I said, I don't have a # - but she did mention possibly giving him a shot or medicine next week if they aren't back up to safe territory. Ca19-9 climbed a little (less than 10 points) this week, too. But, it is still way down from 275 pre surgery.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • hilary
    • Experience with Pancreatic Cancer
    almost 6 years ago
    hilary's Avatar

    External radiation

    Radiation

    Dad begins 28 Radiation Treatments on Monday, Nov 14. I managed to convince the dr to delay till after the holiday weekend so he has a little more time to build himself up! The 28 rad treatments take us over the Thanksgiving Holiday and up to Christmas. We have plenty of distractions during this time to keep spirits UP. Dad's radiation is in conjunction with a 5FU pump... constant infusion. I've heard 5FU won't affect his WBC count as badly as Gemzar, however there is a much greater chance of nausea. Nurses have been pushing the "nutrition, nutrition, nutrition..." So, not unlike after Dad's Whipple, i'll be a calorie counting queen for these 6 weeks! Dad's feeling good and ready to get on with this and done with it! More details as it begins.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    3 Comments
  5. 5
    • hilary
    • Experience with Pancreatic Cancer
    almost 6 years ago
    hilary's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    3 Comments
  6. 6
    • hilary
    • Experience with Pancreatic Cancer
    over 5 years ago
    hilary's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Gemzar Round 2 (of 3) is about to start. 3 weeks on, 1 week off. It seems as though the only side effects Dad is experiencing includes EXHAUSTION(he does not have the energy he wants)... Nausea (but not vomiting, he can't stand the smell of meat cooking - hmmm... kind of like my pregnancy)... and crazy low blood counts (getting shots to treat). His oncology office in Aiken, SC seems to be a fan of the daily kind of shot to boost blood counts. Hopefully Mom will remember and ask about the one that is a 1 shot deal and lasts 14 days (you can only take this when you aren't actively taking gemzar...so, after infusion #3 Dad would have 2 weeks of no infusions because of his off week... he could get the shot the day after infusion #3 before Round 3 starts). His being in SC (and my in FL) is good and bad. Good because I'm able to pretend this isn't happening in little bursts, Bad because I can't make things better for him and check on him regularly. All I know is what I glean from phone calls and sometimes cryptic reponses, "your father is doing as well as expected." Um - what is THAT supposed to mean??? Because i have 2 active petri dishes in my home (my children)... we're waiting till he completes Round 3 to visit... can't get here soon enough!

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  7. 7
    • hilary
    • Experience with Pancreatic Cancer
    over 5 years ago
    hilary's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Gemzar Round 3 was definitely like a horse of a different color. It was awful ... Dad was not active at all... slept... he did eat and drink SOME... He had lots of pains and cold, cold, cold feet. Feet warmers and warming pads helped. Mom thinks it was worse for Dad than the radiation, which was like death. It is OVER... last Tuesday - 7 days ago. The last couple of days he's been feeling better. Scans, Drs appts scheduled for early May. Fingers crossed it's all good - hoping they say he's Cancer Free and able to return to normal living (as normal as you can post Whipple). Followup tomorrow with oncologist doing the chemo to check blood numbers.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  8. 8
    • hilary
    • Experience with Pancreatic Cancer
    about 5 years ago
    hilary's Avatar

    ruminations...

    Other Care

    Ruminations... Dad comes back to Mayo next week for scans/bloodwork. This will be his 2nd check post-treatment (surgery/rad/chemo). In the meantime, his cousin was diagnosed with cancer everywhere (3 weeks after horseback riding!) and a girlfriend of mine, too (she had scans today to see if it metastasized). Seems we can't escape it... I did some research for my girlfriend to help the figure out how to tell their little girl. One thing stuck out: the more you talk about cancer, the faster it loses its mystifying power. We've avoided the 'c' word in my home... though my 12 year old has clearly figured it out (overheard him telling a friend his "granddad has like 5 kinds of cancers." Friend asks, "wow! is he going to alright?" Son's response, "yeah, he'll be fine.") I'm thinking we need to not only talk more casually about cancer ... but also adopt the hope children have. The Drs will make it all right. Crying now ... crying later... I *TRY* to save it for later and enjoy today.

    3 Comments
  9. 9
    • hilary
    • Experience with Pancreatic Cancer
    about 5 years ago
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    Quarterly CT Scan

    Celebration

    Dad's 2nd set of scans came back CLEAR!! May was also clear, but we had a shadow of a rising CA19-9. The CA19-9 is still rising, but this time ONCOLOGY & RADIATION ONCOLOGY Drs agreed to disregard the CA19-9 at this time. There is nothing showing in the scans to correlate the rising tumor marker. Radiation Oncologist did share a theory... the biliary stent Dad had placed last summer (pre-diagnosis) has moved ... the Dr believes this is causing irritation/inflammation which would cause the liver enzymes to increase (which we see) which will, in turn, increase the CA19.9. This jives with what hte oncologist said about wanting to remove the floating stent asap because of hte risk of irritation/infection/inflammation. Dad will have endoscopic procedure on 8/13 to remove the stent floating around his GI track... Hopefully this will get his CA19-9 back on track. We celebrated tonight by going out to dinner... This was a FIRST for Dad in forever. (Post Whipple, he's been soooo leary of eating out) Of course, we forgot his Creon!! My dear husband ran home to get it and bring it back. We definitely wanted tonight to be a POSITIVE CELEBRATION and the BEGINNING of MANY MORE! Oh, and Dad is up to 150 lbs!!! He's gained 5 lbs in 3 months... mostly attributed to the Creon he's been taking the past 3-4 weeks. Surgeon didn't think he'd need to take it, but it's helping him put on weight - so it's a good thing!!!! I feel as though a dark cloud has just been lifted... I feel like an excited electron bouncing off everything ... i feel HAPPY. So Happy, I think I will cry. ;)

    5 Comments
  10. 10
    • hilary
    • Experience with Pancreatic Cancer
    about 5 years ago
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    Anniversary

    Celebration

    Happy first (of many!) Whippleversary, Dad!

    2 Comments
  11. 11
    • hilary
    • Experience with Pancreatic Cancer
    almost 5 years ago
    hilary's Avatar

    Quarterly

    Celebration

    Dad had another clean CT scan ... 6 months with no change, no evidence. AND, since the Stent was removed in mid-August... his Tumor Marker (CA19-9) has dropped! It was 128 in August... now 78! And, he's up to 152#! Slow weight gain... if only he would drink a muscle milk or ensure every day... i know this would help him put on some extra pounds.

    0 Comments
  12. 12
    • hilary
    • Experience with Pancreatic Cancer
    over 4 years ago
    hilary's Avatar

    Quarterly

    Celebration

    Dad had another great scan at Mayo in February. His CA19-9 dropped again to 53! We are thinking it was so high because of that piece of fabric that migrated post-whipple recovery. Since that was removed via ercp, his ca19-9 has been dropping. 53 is the Norm Mayo likes to see in their pancreatic patients. Yay! Dad's CT scan showed nothing in his abdomen. There are some hazy spots in his lungs... the medical oncologist is all up in arms worried over these spots that are too tiny to be biopsied (way less than 5mm), but the Radiation Oncologist says not to worry. He sees these come and go - and even in lung patients, he doesn't worry. Having conferred with another radiation oncologist - he explained that med oncs are more cya and don't get the scan reports like the radiation oncologists do. SO, I'm praying and hoping Dr. Ko continues to be our ray of sunshine on this rollercoaster. He is Dad's Rad Onc - and always positive! he is the one who said to ignore the ca19-9 when it was climbing because nothing was showing in the scans... and he was right. It was climbing because of an irritant. He also mentioned the other day that met pan cancer typically blooms by now (18 months post whipple)... AND, he further explained that spots on the lung is not the typical path metastatic cancer takes... stomach/liver/abdomen...then lungs. Regardless, we will go with " they are too small to biopsy, therefore they are too small to cause worry." Dad is feeling better than ever - is up to 156# and his muscles are coming back and his coloring is good. SC weather needs to improve so he can get out on that Golf Course!!! Also to note: Dad had his first colonoscopy... oh yes, we were sweating this, too. But all came out great. One point of concern was nothing - just a typical diverticulum inflammation. AND: Dad's blood - cholesterol, iron, a1c ALL look great!! Yay! ...till June...

    1 Comment
  13. 13
    • hilary
    • Experience with Pancreatic Cancer
    over 2 years ago
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    Cancer is back/Recurred

    Oh No

    Dad's cancer reappeared as teeny tiny spots on the ct scan in his lungs... no symptoms, so the Drs said continue living... wait till there are symptoms before chemo. Also we were told taking chemo "preventively" has not proven to extend the patient's life - so, "back to normal"

    0 Comments
  14. 14
    • hilary
    • Experience with Pancreatic Cancer
    over 2 years ago
    hilary's Avatar

    Cancer has spread/Metastasized

    Oh No

    Those little spots in his lung were never a problem... it was the 3 tumors in his liver that were hidden... and the awful pancreatitis Dad developed, I'm sure after stressing over those stupid spots in his lungs. The pancreatitis was so bad it created ...wow...I've forgotten the word - a liquid filled pocket of sorts... bad pain, and was creating a partial blockage of his bowels. Pain meds and the blockage did a number on Dad's body... First, we had to get through the pancreatitis...THEN deal with the cancer in his liver.

    0 Comments
  15. 15
    • hilary
    • Experience with Pancreatic Cancer
    over 2 years ago
    hilary's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had no control... Dad and Mom were in SC with an Onco I didn't like... he put Dad off 2 weeks to get "new scans." (Not sour at all... but he thought their office scans would be better than Mayo's...) THe new scans showed the same tumors at Mayo... restarted Dad's Gemzar chemo, but this doctor wanted Dad off decadron. Irgh. I should have / could have / would have... Stand up for what you believe and stand firm... Dr took Dad off Decadron and he started vomiting again... at this point, Dad was going downhill quickly. I didn't know how quickly...

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  16. 16
    • hilary
    • Experience with Pancreatic Cancer
    over 2 years ago
    hilary's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    We started chemo (Gemzar) sooner than the Drs wanted...Dad had to do something to fight cancer...waiting for pancreatitis to calm down was not good... patience was never a quality of Dad's... So, we started Gemzar. Unlike before, this time - lots of vomiting. We tried everything... finally decadron (steroid) worked. Dad was strong enough to go back to SC and transfer Chemo to his Dr there...

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  17. 17
    • hilary
    • Experience with Pancreatic Cancer
    over 2 years ago
    hilary's Avatar

    Lost loved one

    Loss

    Dad passed on Dec 21st, 2013 ... He fought for every breath... He was officially diagnosed early Sept 2011 after a very successful (?) Whipple surgery that lasted 7 hours... passed away almost 2.5 years later from that dreaded disease. It has taken me well over a year to update this WhatNext page... I had to get off the blogs when Dad's recurrence was consuming me. The happy celebrations / you can do this / etc... not what I needed to read when it was bad for Dad... Had I been able to keep Dad here with me,near Mayo - maybe he would have lived a little longer. Had we caught that dreaded recurrence sooner - maybe he would have been able to survive that...maybe... but that would have been one ugly battle... And he probably wouldn't have been able to dance with Mom at my brother's wedding... So thankful for so much, so sad too. I found a couple other daughters who lost their dads to pancreatic cancer around the same time as my dad. We've supported one another since those dreadful days... I'm so thankful for Kylie & Lori. We won't let our dads be forgotten... and will honor the amazing, strong men they were. I have popped on this website a few times the past couple of months... I'm not really in a place to blog again, but if you have a question - feel free to ask. I learned so much on this journey... seems a waste to not share, but it is hard to relive this journey through all the posts/questions. Many thanks to those who supported me through this journey.

    1 Comment