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My Sister's Battle with pancreatic ductal adenocarcinoma (PDAC)
Well, we are now at about 10 months from the time she became jaundiced.
We got to Mayo within ten days or so, had full workup and the assessment was that it was borderline resectable. So, back home for eight two-week cycles of folfirinox followed by chemo enhanced radiation therapy. Between each set of four chemo cycles we returned to Mayo for assessment - the tumor had shrunk to where it was not really visible, and her CA 19-9 marker tests had improved, but were not normal. Following the chemo-radiation, she had a month off (normal planning) - during this time she developed ascites, but we returned on time for the planned surgery - dreading the answer. It was as expected - CT and PET/MRI showed spread to liver, hepatic arteries and omentum had nodularity.
The ascites had become significant with paracentesis every ten days or so - 6-7 liters. A Pleurx drain was installed and she began at home drainage with assistance of home health nurse, sometimes as much as two liters ever other day.
At the same time she returned to folfirinox treatment and made it through two cycles before becoming ill - very low white cell counts (400!) - and, she was hospitalized for 7 days, then discharged to a local care facility. She was given Neupogen to increase white cell output and it worked - from 400 to 8000 in five days. Other blood work numbers were not so good. During the two cycles she continued to drain off 1-2 liters every other day, then about the same in the hospital. The last two days in the hospital the quantity of ascites fluid slowed significantly - and, when she discharged to the care facility the rate of discharge was limited.
Her intent is to improve her condition in the rehab facility and restart chemo to buy time, but is switching to Gemcitabine-Abraxane due to milder side effects.
I don't know if she will make it to more chemo - so very sad.
One confusing factor is the lessening of ascites fluid - I can't find anything discussing this - has anyone seen a reference to this effect? I am concerned it is reflective of a significantly damaged liver, but really don't understand.
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Perhaps because she is allergic to oxycodone family of opioids ... everyone is a bit different, as well.
Discussed options to every two hour dosing (half life of morphine is short) - they said they would use methadone if it is needed. Much longer half life and can layer it and shorter morphine.
Hi All,
Been reviewing options for donations to organizations that spread funds about for pancreatic cancer research - I want the funds to be specific to pancreatic cancer, so, here is my short list of 501(c)(3) organization, with their "efficiency" ratings from charity navigator.org - let me know if you have investigated this or have advice, please?
- Neuroendocrine Tumor Research (Boston) 98%
- Pancreatic Cancer Action Network (Manhattan Beach) 96%
- Lustgarten Foundation for Pancreatic Cancer Research (Woodbury, NY) 93%
- American Pancreatic Association (Prairie Village, KS) 91%
Thanks.
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7 ReactionsHi All,
Well, after several tough days, my sister passed peacefully early this morning.
She was under hospice care, and they had provided liquid morphine, which was very helpful in calming her, easing her breathing and dealing with pain.
This was an ordeal - and, frankly I can't think of anything we could have done differently that would have affected the outcome.
One uneducated conclusion on my part, not the only one, obviously - is that given the aggressiveness of pancreatic cancer, and it's broad and almost extraordinary likelihood of metastasis, a more sensitive and reliable blood screening tool is needed - not for when someone is considered for diagnosis, but every year during physicals. Even if this was perfect some would still not be helped because of the one year cycle - but, it would be a start. It must be caught early.
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7 ReactionsCondolences to you and yours, I know it's hard no matter what the circumstances. Sounds like she fought as hard as she could, and that is always respectable.
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1 ReactionSo very sorry for your loss.
God Bless
My condolences for your loss. I agree about screening. I have the BRCA mutation which predisposes me to PDAC. It seems the knowledge that this is related is not widely known. Multiple family members, including my daughter, sister, brother, 3 nieces, a cousin and two second cousins are also gene carriers. My sister had to look persistently to find a doctor knowledgeable about BRCA to recommend appropriate testing. My brother was initially told not to worry about it, pancreatic cancer is rare. He will be seeking advice from doctors knowledgeable about screening for pancreatic cancer.. People with increased risk of pancreatic cancer can have MRCP, endoscopic ultrasound, and testing with CA 19-9 as screening tools. I wish I knew that the BRCA gene predisposed me to pancreatic cancer. I could have sought out an expert and had screening testing done. Having a family member with pancreatic cancer increases the risk of developing pancreatic cancer so it would seem that those persons should have screening. A better test would be great, but it is possible for persons at increased risk do have some suitable screening tests but seeking an expert is very important.
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1 Reactionin complete agreement about the necessity (not option) but the necessity of on-demand screening by patients requesting these tests. The risks of not being test on time (like colonoscopy) and just too dire to justify refusing the testing to those who want it.
I'm very sorry about your sister. wishing you peace.
My heart goes out to you and your family. 💜
@mayoconnectuser1, I'm only catching up with the news about your sister's passing today. I, too, send you a gentle embrace. Should you wish it, please know that there is a support group here dedicated to this journey.
- Loss & Grief Support Group https://connect.mayoclinic.org/group/loss-grief/
You have chosen well established non-profit organizations to honor your sister and advance treatments for pancreatic NETs. Thank you.
I appreciate your updates as I have chosen not to have anymore treatments. I asked the surgeon how long I had and he said 6 to 8 months--that was Dec. 1st. He said chemo would only add about 4 months, but that there was always hope. He said to go out and do everything I wanted to do. The chemo made me so sick that it's not worth it to for 4 months. Today is 3/26/23 and I walked my dog and pulled dandelions and called a friend who has pancreatic cancer and had the Whipple nine years ago. There are now some nodules in his lungs.
I know that my time is coming. The symptoms I have are some anxiety for which I take lorazepam and a little discomfort on my right side--no pain. I also take a Creon with meals and pray a lot and hope that I will be a miracle.
Of interest is that five years ago I didn't feel good and went to ER and they did an ultrasound and MRI. All was okay, however, I recently looked at the results of those tests and it said that my pancreas had many cysts, probably benign! Well one wasn't! I don't know what could have been done and this is my fate.
Please keep updating. At least, I can see what is ahead for me. I was diagnosed on January 31, 2022. A week later I had a gallbladder attack and had my gallbladder removed. I had chemo and SRBT radiation in preparation for the Whipple. The PET scans and CT scans didn't show the carcinomatosis until the surgeon went in and saw it. I had robotic surgery and healed quickly. The doctor did not perform the Whipple, but took 6 inches of my intestine and created a bypass over my pancreas so I could digest food.
On most days I feel normal. I pray that God will give me more time.
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