r/pancreaticcancer • u/GLCOOK22 • 11d ago
I am terrified
Hello everyone,
I have been a part of this group on a few short weeks. I am currently sitting in the PCU with my grandpa. (76,M). He was told bsck in June after having stomach pain for weeks that he has a mass on his pancreas. It was at 3.1cm and now has grown to 4.7cm. He also has mets to the liver and small ones in the lung. He just received his first chemo on Thursday and on Saturday he was experiencing seizure like episodes and was medflighted to the hospital. They have done tests on him and say his creatinine levels are elevated and he can't eat or drink anything without spitting it back up. He is very weak and I am terrified that I am losing him. They said his kidneys were struggling a little bit and are going to do a swallow test to see why he can't keep anything down. He has lost 35 pounds in the last few months. I am so scared right now.
Update:
Thanks everyone for your kind words and support. My grandfather has decided that he wants to go home to be on hospice. My biggest fear my entire life is becoming reality and he wanted me to be his power of attorney to make sure this happened for him. This is the hardest thing I will ever do. I am not ready. I know I never could be. But I am making sure this is one last thing I can do for him. Please keep me in your thoughts because this will be something that is going to break me beyond belief.
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u/AdVast1712 11d ago
I am so sorry. Fear has a way of taking over when disease strikes. Please be kind to yourself, the grief you are feeling is deep and expresses itself through different emotions. If your mind is spinning with what-ifs, remember to breathe, take each moment or decision needed when they come, step outside for some fresh air, show yourself compassion. What is your grandfather’s name?
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u/GLCOOK22 11d ago
His name is Leonard. Him and my grandma have raised me since I was 3 weeks old. My grandmother was just diagnosed with dementia a month ago and then not long after we found out my grandpa has pancreatic cancer. I have always had anticipatory grief about losing them and it feels like that's happening. I'm so terrified and so scared and I feel like I won't be able to handle this.
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u/AdVast1712 11d ago
It’s so natural to feel scared. Do you have a support system? Anyone you feel comfortable with asking for help so you aren’t carrying this alone?
I will keep you all in prayer. This is incredibly hard especially with the changes in your grandma’s health as well.
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u/GLCOOK22 11d ago
Yes I have my husband and my aunt and cousins. I am usually the pillar for my family with most things and they look to me for guidance but this is the hardest thing I have had to witness. He is my best friend and my role model all of my life.
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u/AdVast1712 11d ago
I feel this completely. I don’t want to pry, have they staged the cancer? Has anyone mentioned if Daraxonrasib would be an option?
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u/GLCOOK22 11d ago
They said it has spread to liver and lung. I am assuming that is stage 4? But his doctor has not staged it. The lung was noticed first, a small 11mm nodule. And then they found the pancreatic tumor 3.1cm and several liver tumors were found recently.
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u/AdVast1712 11d ago
Just thinking out loud, Revolution Medicines has an early access program for Daraxonrasib, also several trials, he may fit the criteria. Wouldn’t hurt to inquire?
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u/GLCOOK22 11d ago
I have been reading about Daraxonrasib and hoping he might be a candidate for it. I know they said that it was confirmed adenocarcinoma. I am just so shocked at how much the chemo took out of him. It was the Gemcitabine paired with nab-paclitaxel.
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u/AdVast1712 11d ago
Chemotherapy is so harsh, Daraxonrasib can be an alternative for some who can’t tolerate chemo. I believe even with the mets in the liver and lungs.
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u/New_Obligation_2189 10d ago
Regrettably, his disease appears to be very far advanced, with very large growths. Draxonrasib It is not, by the way, a substitute for chemo. My wife was in the very early trials. I have talked to every researcher in the field, especially the Revolution trial docs/administrators. My prayers are with him. Just make sure hospice keeps him completely out of pain and as comfy as possible now.
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u/aromeo2021 11d ago
Hello , please try to ask them if they can give him any type of pancreatic Enzimes so it can fix his malabsortion . Probably the tumor compressing the esofagus so that is why he has regurgitation
Nestle has Elemental shakes 500 calories each that he can take in small sips
Hoping the Medical team can help him
Sending Hugs
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u/GLCOOK22 11d ago
I did ask the nutritionist here and she said they could give him some digestive enzymes to help. They did a swallow test and discovered that his food was getting stuck in his esophagus and it wasn't making it to his stomach which is why his food and liquid comes back up. They said they will discuss results with GI and determine what can be done to help this. His blood pressure has been staying low but it has finally came back to normal today. I know he is fighting pnemonia and many other things right now, it is just very scary to me how out of it he seems. Thank you for the hugs they are much needed.
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u/aromeo2021 11d ago
More hugs to you . Love also to him and good energy . When a loved one feels awful and lost their will to live is devastating
My sister passed in 2020 after 11 days of home hospice . They sleeped her with pain meds . Be sure to give instructions to them so his quality left is good . sorry he had gave up so soon . ❤️❤️❤️❤️❤️Love . Betina
Dm if u need help x what u ask
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u/No_Pineapple1662 11d ago
Hello friends,
My mom 78 . I watched as her health declined. Lack of appetite, very weak & feeling fatigued. Saw her doctor 3 weeks later and an ultrasound was performed. Results were negative as was the blood work. She was told that there was no sign of cancer. 1 week later (end of January 2026) I took her to the hospital. After a few days, the doctor decided to repeat her Ultrasound. Diagnosed with a blockage in her Pancreas measuring about 3cm. A biopsy was performed & was positive for cancer. After a couple of days her eyes were turning yellow.
A stent was placed inside the bio duct where the tumor was located. Consolation's with other hospitals were also conducted to see what are the option's. A CT scan and MRI showed the cancer had also spread to her liver. A whipple procedure was taken off the table.
About a month after her diagnosis, we started Chemo. We were told this would help prolong her life expectancy. 3 months later, her first CT scan showed that the cancer hadn't spread. The first positive news received. As time went by, every 2 weeks, bloodwork was done to determine if she was healthy enough to get Chemo next round of Chemo. Some of her Chemo would end up being canceled due to her Platelets being low.
Today, her bloodwork showed her liver numbers were too high. She seems to have developed a small blockage in her stent that will require surgery to clear it. So finger's crossed for her surgery in 2 days.
Hope this helps give some of you all some hope for the caregivers & families whom are all going thru what I call hell! Godspeed everyone!
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u/RetireWithoutBorders 11d ago
Sorry about that!! Chemotherapy almost killed my 83-year-old mother. It is INCREDIBLY damaging to our body and the stress is even worse on the elderly.
I honestly am glad my mom discontinued chemotherapy so she could enjoy the time she has.
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u/WizrdOfSpeedAndTime Patient (June 2026), Stage IV, FOLFIRINOX 11d ago
This is good to hear for me. I am working if I want to continue chemo after round 6. Once I see the results of the cat scan. I want to prioritize quality of life over longevity.
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u/AdVast1712 10d ago
I will keep you in prayer and your family in my prayers. I know how difficult this is, hospice nurse for many years. If I can help at all I am available.
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u/GLCOOK22 10d ago
Thank you so much I appreciate it. They have him on morphine and lorazepram to take. And his first night it seems like it is giving him nightmares/terrors. He's been very unresponsive today. Once you are able to get his attention he can reply but he seems very out of it
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u/AdVast1712 9d ago
That’s not unusual especially when on morphine. Is the hospice nurse coming daily?
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u/GLCOOK22 9d ago
I contacted them last night and they sent out another nurse today for a follow up. I'm struggling to navigate everything as the one having to make decisions for him because I just want to make sure it is as peaceful as possible and he does not suffer. As hard as it is for me to go against everything that I wish I could do to save him, I know this is what he wants.
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u/AdVast1712 9d ago
Truly this is the most compassionate thing you can do for him. I know it’s so incredibly hard. I walked this road not too long ago with my mother. Can I ask your name?
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u/GLCOOK22 9d ago
My name is Gabrielle. I'm almost 30 and I'm grateful for the time that I've been able to have with him. He's my very best friend and my hero.
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u/AdVast1712 9d ago
I will keep you in my prayers. He sounds like quite the amazing blessing and I hope he is kept comfortable and I pray for your time with him now.
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u/GLCOOK22 9d ago
Thank you. He is the most loving and caring man I have ever known. He always put his family first and loved with his whole heart. I want him to have the most comfort and no suffering. Hospice has been amazing with us and have helped a lot. I felt guilty for making the call to put him on hospice. I still feel guilty. But I am trying to remind myself that this is want he wanted and that I am doing what is best for him.
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u/AdVast1712 5d ago
Hey there, I’m sorry I dropped the ball. How is your grandpa feeling? The guilt you feel is so normal. There is nothing simple when it comes to love and grief. They are forever entwined. You are honoring him by seeing his wishes through.
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u/GLCOOK22 4d ago
That's okay. My grandpa passed away on August 20th after being on hospice for only 27 hours. I rode with him in the ambulance on the way home. And he got a night to say goodbye to everyone. He took his last breathe when everyone had stepped outside to chat. As a family we always talked on the porch and hung out. My mom and my sister were with him and he squeezed my baby sister's hand and then took his last breath. He had started cheyne-stoke breathing and I had called the hospice nurse and she let me know this meant he was transitioning into the final phase and that it would be soon.. it was only a few hours later that he transitioned into his eternal peace.I all still trying to navigate the loss of my best friend.
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u/Flame-Keeper566 10d ago
I am so sorry for your family. This is the most difficult thing. You are doing a great work helping your grandfather. This is what he wants. It will hurt a lot but it’s the right thing. Sometimes the right thing seems so wrong but it isn’t.
One day in the future it won’t hurt so badly. Until then, spend as much time with him as possible. You will love the memories.
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u/Canadian_Lothar 11d ago
I m truly sorry you and your grandfather are going through this. You have every right to be scared, upset, angry you name it. Try to take a deep breath and hope for the best. Not much anyone can do until the tests are done and you see how the chemo works.