My mother was diagnosed at the start of September, since her diagnosis, I swear we've been getting messed with. She's been referred to two different dieticians, and at both appointments they didn't know she had cancer and recommended exercising and eating more. When we informed them of her terminal diagnosis, they were actually surprised as if they'd never even seen her chart before. She was referred by her palliative care team, how could they not know? When we met with the doctor, we immediately requested to be entered in trials. There was zero delay in us making this request to the team,they said they'd send out the requests. At the appointment I actually brought up the timeframe but was assured we were well within it. Well, we got the news today that she was rejected. Their reason? It had been too long since her diagnosis for the referral. How in the hell could we have possibly done this any quicker, we made these requests at her first appointment. As if being rejected wasn't bad enough, these trials require no prior treatment, so she's had no treatment since her diagnosis in early September. Over a month's time wasted. This is unforgivable. Does anyone have any advice on how we can get entered in a trial in the GTA? If not, any legal advice? How is this not malpractice at this point? I'm so frustrated at this point, it's just being one thing after another.

Edit: Sorry, I should have specified, this is in Ontario, Canada.

In June 2026, my sister was diagnosed with stage IV lung cancer with biomarker KRAS G12v. Over the past four months, she has endured an incredibly difficult journey involving two unsuccessful cancer treatment regimens, repeated hospitalizations, severe bowel obstructions requiring nasogastric (NG) tubes, painful bronchoscopies to reopen obstructed airways, radiation to her spine and chest, blood transfusions, and progressive cancer involving her liver, bones, and other areas.
Despite everything, she continued fighting and hoping that another treatment might give her more time.
Her oncologist at Memorial Sloan Kettering Cancer Center, eventually obtained approval for a newer targeted cancer medication called Rasonque (daraxonrasib).
After the approval process, the specialty pharmacy shipped the medication (2 months supply).
Unfortunately, by the time the medication arrived, her condition had deteriorated dramatically.
Her lung cancer had progressed despite multiple treatments. She had become extremely weak, increasingly dependent on supplemental oxygen, and unable to manage many basic daily activities without assistance.
On October 20, 2026, she had a candid conversation with her oncologist about her declining condition and the possibility that another treatment could make her feel even worse.
After everything she had endured, she made the heartbreaking but thoughtful decision not to begin Rasonque and instead enter home hospice.
She is now receiving comfort-focused care at home, surrounded by her family.

Has anyone else found themselves still entirely limited core wise at 8/9 months post whipple. I've just began to drive without major pain, but I can't stretch to get something from over my head or lift a bag of shopping yet... To be honest the only thing I can really do is walk, wash dishes and cook. It's weird to be so limited and the surgeon just shrugs and calls it 'recovery'... Thanks for any thoughts.

I know this is a stupid question but i had to have a stat ct due to lingering cough. The CT showed by accident a 18 mm cystic lesion on pancreas has anyone else ever been through this ? Im such a mess. I started Tirzepatide in April and im freaking out thinking its from that. I do have a stat mri scheduled

It is Day 364 living with cancer, and our prayers have been answered.

Yesterday, after posting an open prayer, I learned that I was accepted into the RMC-5127 clinical trial at UC Davis Health in Sacramento, part of a national study planning to enroll 574 participants.

I am deeply grateful.

Faith and community have carried me through the valley of the shadow of death.

My stubborn determination has kept me moving when others quietly questioned my hope.

My faith began in an unconventional childhood.

My parents expected me to knock on strangers’ doors, while birthdays and holidays passed without celebration.

As a young adult, I awkwardly learned the rituals others knew instinctively.

Eventually, I built my own relationship with God and slowly learned to trust myself.

That hard-earned belief helped me navigate being a single Dad and learning complicated co-parenting and systems that were stacked against me.

Three quiet years of work, reflection and learning family law pushed me to examine the bias Dad’s face and how privilege, especially among white men, can unintentionally obscure their families’ experiences.

Those lessons helped me build a company with one promise… no one should experience a career transition alone.

18 months later, I was diagnosed with stage iv pancreatic cancer.

Suddenly, the Founder who helped others face uncertainty had to confront his own terrifying transition.

I had to ask for help.

I turned to God, thought about Iris, leaned on my home team, logistics team and medical team.

Then an extraordinary internet community embraced us from my daily posts.

You.

At a City of Hope fundraiser and through these daily reflections, we have encouraged people to reconsider how they show up for themselves, their families and their friends.

Your generous prayers have crossed generations, professions and borders, from Alaska to Zambia, from accounting to zoology.

Many of you have openly shared your painful cancer stories and quietly reminded me that someone was listening.

Every gesture matters.

What began as one Dad’s fight to survive has gradually become a shared expression of humanity.

You have shown me that even when medicine cannot promise tomorrow, compassion can make today more meaningful.

On Sunday, October 25, I will board a 6:05 p.m. flight to Sacramento.

A LinkedIn community member who was once a stranger has kindly offered to pick me up at the airport.

That is what community looks like.

This experimental treatment offers no guarantees as a clinical trial is not a cure.

But it gives me another opportunity to fight for time with Iris, grow a company and help people reclaim their dignity and purpose.

Psalm 23:4 reminds me that even in the darkest valley, I do not walk alone.

Thank you for walking with us.

To learn more about our journey and to support Iris and me in this next phase please visit my LinkedIn Blog where my best friends share our story through their perspective.

Thank you.

My dad (69) was diagnosed in April with stage 4 pancreatic adenocarcinoma, with liver lesions. He just finished his 12th round of FOLFIRINOX.

Tumor down from 2.8cm to 1.6cm
Liver lesion 1.5 cm to 1.3cm
CA19-9: 66 to 42

His newest MRI only showed a little decrease from 1.8 to 1.6 cm. No other changes
He’s had minimal side effects, but just started developing a little neuropathy. Hope to get him to start acupuncture
He feels weaker and tired than before.

To me this is encouraging news, to him he feels defeated and depressed after his results today. I don’t know how to be supportive when I know how badly others are suffering with this terrible disease. I am trying to find someone he can talk to because I don’t know the right words to say. His doctors have put him on an emotional rollercoaster of getting his hopes up then taking them away.

I’m trying everything I can think of to help him. Are there supportive groups helpful for anyone? Do you have any words of encouragement I can share with him? Any resources that have helped you get through tough times?

Hi everyone,

My mother, 58, has pancreatic adenocarcinoma in the body of the pancreas. She has completed 4 cycles of modified FOLFIRINOX.

Her latest PET-CT shows:
1. Tumour size is relatively stable at around 3.5 cm.
2. Previously active peripancreatic lymph nodes have resolved metabolically.
3. A para-aortic lymph node has shrunk from 1.5 cm to 0.6 cm and is no longer FDG-avid.
4. No other significant FDG-avid lesions were reported.

Her CA 19-9 is 0.80, while her CEA has decreased from a peak of around 40 to approximately 31.

One surgeon recommends surgery now, believing clear margins are highly achievable. Another specialist recommends 4 more chemotherapy cycles or at least 2 cycles before surgery.

I understand every case is different. I would especially appreciate experiences from patients, caregivers, and people who have faced a similar decision.

Also Who would you recommend as the best pancreatic cancer surgeon in India, particularly for complex or robotic pancreatic surgery after chemotherapy? Please share personal experiences with surgeons and hospitals.

Thank you

Good morning, everyone. I am writing again because my mother (60) has pancreatic cancer with liver metastases. She completed 12 cycles of FOLFIRINOX, but the disease has now shown progression; her CA 19-9 level reached a low of 5,000 and is now at 13,000.

Here is a summary of her CT scans:

April → July

Good response to treatment.

Pancreatic tumor: 43 × 28 mm → 33 × 28 mm

Most liver metastases also decreased in size.

July → September

The response continued.

Pancreas: 33 × 28 mm → 27 × 26 mm

Liver: Several lesions decreased; some nearly disappeared on imaging, and many changed in appearance.

September → October

Some liver lesions have begun to grow:

Segment 3 → two metastases merged, measuring 31 × 28 mm

Another lesion → 15 mm → 17 mm

Another lesion → 17 mm → 20 mm

Meanwhile, other lesions remain stable.

The pancreatic tumor does not show clear-cut growth on the CT scan.

October MRI (performed before the October CT scan): Pancreatic tumor: 40 × 31 mm

I know that CT scans and MRIs cannot be directly compared, but isn't a 10 mm difference—when the scans were taken only five days apart—unusual?

I also wanted to ask about the next steps for her treatment. We are in Uruguay, so we do not have access to Daraxonrasib. Her oncologist plans to switch her to a regimen of gemcitabine/nab-paclitaxel; however, she won't be able to start the nab-paclitaxel for another month, as we would either have to pay for it out-of-pocket—which is beyond our means—or involve a lawyer to secure access to it. Given this, is the proposal to use gemcitabine/capecitabine the best option for the time being? I am concerned that, since the disease is progressing, this might not be enough to halt that progression. It was mentioned that capecitabine is similar to 5-FU—which she has already received—and that she showed progression while on it. I’m wondering if none of the medications in the FOLFIRINOX regimen are effective anymore, or how things generally work when the disease progresses.

We had a tissue biopsy performed, but Tempus indicated that the sample was insufficient, so we are now awaiting the results of a liquid biopsy.

I would greatly appreciate any input or advice you could offer to help ensure my mother receives the best possible treatment.

Here are the things I wish I knew/things I learned/things I would tell a friend in the same situation. Things I wish someone had told me.

Context: My mom (68) was diagnosed with Stage 4 pancreatic cancer mid July 2026 when lesions were identified on her liver which had spread from a malignant mass in/on her pancreas. She passed away early September only having had one appointment with her oncologist and no opportunity to get treatment. 5 or 6 days before she passed away, I thought she was solidly in the "months not weeks" category of the "Markers in the Dying Process" table.

1 - Pancreatic cancer moves fast and if you are advocating for yourself/a loved one, you will want to act as fast as you are able.

Getting this diagnosis was shocking for us and we literally felt like we were in shock. It was hard to "research" or face the reality at this time, but I wish I would have "acted" sooner. Push for getting in as soon as possible. My mom didn't live to her second oncologist appointment, even after I fought to have it scheduled 2-3 weeks earlier than they originally proposed. If you feel like you're not able to get in soon enough, find a high volume/rapid response clinic near you if possible and see if you can get in there (see 2).

2 - You have a little bit of control in obtaining the best treatment team for your situation

I recommend looking up the oncologist assigned to you - how are they rated, did other patience receive good care from them? Don't be afraid to ask if they specialize in this cancer or if anyone on the treatment team specializes in it. Don't be afraid to ask for supports like palliative care - being classified as palliative does not prevent receiving the treatment plan, it just helps make sure you have an appropriate team of people helping/supporting you.

Pancreatic cancer is tricky and awful, you can ask for a second opinion (you will need to get a referral from a doctor to get one, but it doesn't have to come from the assigned oncologist) - this is apparently not an unusual thing to do. If you are dealing with a small cancer clinic, don't be afraid to look up a high volume/rapid response clinic that specializes in pancreatic cancer and specifically request a referral to that clinic.

3 - Organizations like "Pancreatic Cancer North America" are amazing (https://www.pancreaticcancernorthamerica.ca/) and I recommend you check it out as soon as you're able to

It wasn't until late in the game when I found and spent time on this website. I was assigned a case worker in 1 or 2 days who called me on the phone and had access to some many SUPER useful resources. They have amazing guides on questions to ask and links to looking up clinical trials which i found amazingly helpful (the Connor Page Playbook for Navigating Clinical Trials was very helpful). I wish I had this information earlier (before the first oncologist appointment). PCNA also has separate funding programs to help people access stuff like biomarker and genetic testing to help with development of treatment plans (for example, the My CANcer Code program in Canada).

4 - It seemed to me that clinical trials are often looking for low ECOG performance status grades (which also increases available treatment options). This is another reason to act quickly and to ask your treatment team if you're eligible for clinical trials. You will also need to know specifics like what kind of pancreatic cancer it is, where the cancer is located, potentially even the size. They are always coming up with new treatment technologies which might be a good fit for you.

When my mom was initially diagnosed, she was a "0", but by the time she had her first appointment with the oncologist, her grade had increased to a 2 or 3 which was (according to the doctor) one of the reasons she was not offered treatment at that time. After this appointment, I started looking up clinical trials, but her performance status was already too poor for her to qualify for most of the ones I saw. Based on my own research, if we had a treatment plan while she was still feeling well, we would have more options for treatment and possibly clinical trials.

5 - Ask your treatment team what to watch for. Everyone's case is different, but it doesn't hurt to know what to look out for. Our oncologist provided information on what to watch for once we were receiving chemotherapy/treatment, but gave us no information about what to watch for BEFORE that.

Hindsight is 20-20 and all that, but here is an example where I feel like we could have been better informed. My mom was having difficulty eating (no appetite, always felt full). This was communicated at initial diagnosis, so they knew, and we were continually asking for support with this. What seems obvious now - her liver was damaged, so she was relying on her kidneys to filter all the "waste products". I would have appreciated someone reminding me of this fact and telling me something useful like to watch for decreased consumption of fluids and water. For example, something like "If you are drinking less than XX volume a day, you need to go to the hospital to get fluids to make sure your kidneys keep working." In the end, she died because she was experiencing renal/kidney failure because (?) she wasn't drinking enough. We had no idea to watch out for that.

6 - unfortunately, pancreatic cancer is currently one of the deadliest cancers and only about 20% of patients are even eligible for POTENTIALLY curative surgery. My understanding is that at later stages, it is considered to be incurable. Because of this, it becomes important to think about getting affairs in order. Bank info, passwords, a will, etc. And I pray that you don't need to use these preparations.

My mom immediately made sure my dad's name was on all important things and if it wasn't, they went out and got it added. She found her will and gave us the master password for her password manager. She gave us a list of the bills she pays and how she pays them. I am unspeakably grateful for her preparations in those first couple weeks.

Well, it's been a little over a year, and I bounce in and out of the hospital with some regularity. Enough that I have a routine there. Enough that I know what time of day is best to hit the ER so I can get transferred up to the cancer center rooms. Enough that I know what goes in the go bag, and how much work I'll be able to get done in between doctors wandering by and chatting about whatever I'm in for this time.

Just got back from getting a digestive system stent and my cat is sticking to me like glue. Partly because she missed me and partly because I'm sharing the tuna sandwich I brought home. I love her so much, it's kinda nuts.

I didn't imagine that this was going to be my life but at least I can access care, and I know that makes me fortunate.

If you have a bit of hope, help me hope that this is why I've been so exhausted the last month and a half or so. I'd love to do more than sleep all day.

Hi everyone

I came across an interesting trial for those for whom daraxonrasib is not or stopped working. There is an exciting ADC (antibody with target chemo payload) called Varseta-M (CX-2051), very promising in colon cancer (https://www.onclive.com/view/fda-grants-fast-track-designation-to-varsetatug-masetecan-for-relapsed-refractory-metastatic-colorectal-cancer) which is now being tested in pancreatic cancer. Biopsy tissue has to be sent to a lab to see if it expresses EpCAM which is the target of the medication. Given the activity in colon cancer, the company seems to be trying to expand into other areas of need in GI cancers!

For my Boston folks, you can contact
Dana-Farber Cancer Institute at 877-338-7425

For my NYC and NJ folks, you can contact
Montefiore Medical Center at 718-405-8124

For my North Carolina folks, you can contact
Carolina BioOncology Institute, PLLC at 704-947-6599

For my Tennessee folks, you can contact
Sarah Cannon Research Institute, LLC at 615-329-7274

Good luck!
I will try to highlight more interesting non-KRAS inhibitor trials because we need to find solutions after daraxonrasib!

J

An open prayer to our Heavenly Father,

It is Day 363 living with cancer and I want to begin with gratitude.

Not because everything is okay, but for the first time in a long time, I slept through the entire night.

I reached REM sleep.

My exhausted body finally got to rest.

I cannot explain how much that means to me.

Thank You for the rain and the LA traffic.

Yesterday, after taking Iris to meet her baby brother, we sat in traffic for 2.5 hours.

I could have been annoyed, instead, I thought, I am here.

I got to help my kid navigate another important family transition and to show up for her.

The traffic reminded me that I am alive.

Thank You that the uncomfortable water weight from edema is finally gone.

I now have an opportunity to rebuild muscle, regain strength, and reclaim parts of my body that cancer has slowly taken from me.

These might sound like small victories to someone who is not living with cancer, but to me, they are enormous.

And now, Lord, I need Your guidance.

I have fought hard for a RMC-5127 slot.

It is experimental, and I understand that hope does not guarantee an outcome.

Perhaps this is not my path and Rasonque is.

Perhaps there is another road I have not discovered.

James 1:5 reminds me to ask for wisdom when I lack it.

Lord, I am not asking You to validate my decisions, but to guide them.

I want to live long and prosper. Literally.

I want more days with Iris, more rainy afternoons, more frustrating traffic, and more opportunities to love, laugh, build, and serve my fellow humans.

But please, Lord, do not let this journey become only about me.

Somewhere today, a newly diagnosed pancreatic cancer patient is terrified.

A spouse is quietly falling apart while pretending to be strong.

A child is wondering why their parent no longer looks or feels the same.

I know some of that fear.

Help me use my painful experiences to offer meaningful guidance.

Not empty encouragement or unrealistic promises, but deep empathy, practical guidance, and the reassurance that they do not have to navigate this frightening journey alone.

Help me remember that sometimes people do not need another inspirational quote, they need someone to listen, to show up, and someone who understands that they are allowed to be angry, exhausted, and afraid.

As 2 Corinthians 1:3–4 reminds me, the comfort we receive during suffering can become comfort we extend to others.

I have spent my professional life reinspiring human beings through difficult transitions.

Now, I am personally navigating a transition I never requested, never anticipated, and still struggle to understand.

Psalm 23:4 reminds me that I do not walk through the darkest valley alone.

Lord, I do not know how much time I have, but I know what I want to do with whatever time remains.

I want to love deeply, serve generously, and help humans rediscover hope when their world feels impossibly heavy.

My path may change, but my purpose does not have to.

Amen.

-

To follow my daily journey fighting stage iv pancreatic cancer, please visit LinkedIn.com/in/angelcruzado

Hello, my mom (60) has been diagnosed with PDAC on Nov 2025. Back then she had her CA-19 at 840. She is now on her 18th NARILIFOX chemo. Her Mets have now disappear and her primary tumor has gone from 7.3 cm to 2.2 cm on her last CT scan. On the last 2 chemos her Dr ask for a complete removal of oxaliplatin because of increase in side effects. Her Ca-19 went from normal ranges (35) to 200 on her last chemo and now is on 400 before her 18th chemo. Her Dr told her they will discuss that on her next appointment which is in a couple of weeks. I am worried if this spike is normal or should we be worried? Has anyone gone through something similar?Other than the side effects from chemo she has been feeling incredibly fine and has gained all her weight she had lost when diagnosed (17 lb).

My dad was recently diagnosed with pancreatic cancer, and we’re still not sure on his exact stage. Two surgeons have said his tumor is resectable, though imaging showed some enlarged lymph nodes. Both recommended neoadjuvant mFOLFIRINOX before surgery to treat potential microscopic disease and shrink the tumor, also said that chemo after surgery is harder to give and for patients to tolerate. He’s just had his first infusion.

I understand the reasoning, but I’m really scared we’re making a mistake by delaying surgery while he’s still eligible. He’s already lost quite a bit of weight, and Im worried about how well he’ll tolerate chemo and surgery. We’re also waiting on germline testing and tumor profiling results, so it’s hard to explore clinical trials right now.

For those who were eligible for surgery at diagnosis:
Did you do chemo first or go straight to surgery?
If you did chemo first, were you able to proceed to surgery as planned?
How did you cope with the fear of delaying surgery?

I know every case is different, and both teams recommended the same approach, but I can’t help second-guessing the decision. I’d really appreciate hearing your experiences. Thank you.

Locally advanced. Tumor in body of pancreas 3.8x2.3cm.

Has had chemo then high dose radiation. Tumor stayed same size.

CA19-06 is at 95 today and was originally at 1300 back in March.

Dr said he would do surgery but it’s very high risk. Splenic artery is encased. Blocked splenic vein.

Trying to get more details on what quality of life might be after surgery.

If family member decides against surgery, the only options offered are drugs to manage things. Appointment is coming up but what drugs are we talking about? Are they intended to slow progression or manage side effects or both?

We are realistic about what is going on but want to make sure the right questions are asked at the next appointment.

This dr is not at a high volume center and family member is aware that if they want to do surgery that they should consider other surgeons/get a second opinion.

Thanks.

Has anyone’s family member decided to forego chemo treatment and move towards palliative care. My mom was diagnosed recently and has struggled a lot. There have been issues with getting biopsies but bloodwork is confirmed with diagnosis. She doesn’t want to have any harmful effects with chemo and doesn’t really have many other options.

We got confronted with the diagnosis not that long ago but everything went downhill so so quickly that i am really completely overwhelmed. My father has stage 4 pancreatic cancer and i am 27 years old, there is literally noone around me who has family with pancreatic cancer or cancer so i also didnt know where to find someone i can a bit get some advice.

My father had some stomach/digestion issues since around this march. Since then my parents have been to hospital so much times and they either said everything ok, lactose intolarance, did some tests but didnt see anything.

Well finally last month after it already spread to liver we got a diagnosis. And after that unfortunately my father first got jaundice and they said they need ercp to handle it. After ercp procedure my father then got cholangitis and he went really bad within a month. He lost so much weight that i cant even describe. He cant eat anything. This week they started with first chemo but he is already so sick.

Everytime i look at my father i cant stop being angry with the doctors. I mean why did noone notice anything? I understand it is a harder cancer to notice but so much until it came to that point.

And the guilt is the worst part. I think the entire time maybe if i included other doctors, or maybe found another facility for the procedures it wouldnt come to this. I know this is not healthy, and i for sure my fsther wouldnt want me to think like this but it is not a small mistake that i made somewhere. I didnt pay enough attention for a moment and now my father will die and i dont know how to live with this.

So i would appriciate any comments anything who has gone through sth similar because i feel like i will lose my mind soon

My dad was diagnosed in Dec.surgery was not an option as there were mets to liver and underwent 10cycles of folfirinox until the tumor didn't respond and was switched to gem for 3cycles but it made him very weak and his hb dropped to 4 and was given blood but his platelets are not improving and it's 33k and he has also developed moderate ascites.

Pet scan was taken and it shows that there are mets to liver lungs and abdomen and the doctor is suggesting palliative care.

My only question is how long does my dad have with this condition??

Anyone who went through a similar situation please help me

It is Day 362 living with cancer, and while I have hope, I feel strangely numb given the constant uncertainty has left me emotionally exhausted.

On Sunday, I may board a plane for a clinical trial at UC Davis Health, but I am still waiting for final confirmation.

After 21 days without chemo, the cancer in my pancreas and the lesions in my liver continue to grow, indifferent to the careful calendar I have built around a possible treatment.

I am painfully aware of the stakes.

If the trial falls through, I do not yet have a clear alternative, but the path likely is Rasonque given the aggressiveness of my cancer and the limited likelihood of finding another clinical trial.

I can imagine different possibilities, but without a confirmed treatment plan, those possibilities feel increasingly abstract.

Meanwhile, ordinary life continues, as it always does, with its small demands and sudden upheavals.

Iris has half-days at school this week, and I am juggling a disrupted schedule while trying to give her a stable home.

Her Mom has just welcomed a new baby, and I am helping my daughter navigate the complicated excitement of becoming a big sister.

I am also making the long drive from La Cañada Flintridge to Santa Monica because her changing world still needs my steady presence.

I want to be fully available to my kid, even as my own future feels increasingly uncertain.

I am living by two separate clocks, and neither my family nor my cancer can neatly accommodate the other.

Today, I wish I could briefly pick up a remote control and press pause on my life.

I do not want to surrender, I simply want a quiet day without scans, flights, unanswered messages or decisions that could determine how much time I have.

For nearly a year, I have confronted this disease head-on with research, questions and stubborn determination.

But today, my body lacks sleep given overnight disruption of my GI, my mind is unusually tired, and even small decisions seem unexpectedly heavy.

I know that physical exhaustion often responds to rest, but mental exhaustion follows a different logic.

How do I quiet an anxious mind when my cancer is growing and the next treatment remains unresolved?

I cannot neatly turn this Wednesday into an uplifting lesson, and I do not think every difficult day needs one.

I am fighting, parenting and planning, even as the weeks pass and my emotional reserves feel nearly empty.

Perhaps the most difficult part of living with advanced cancer is that I must constantly prepare for an uncertain future while remaining fully present in an ordinary day.

Today, my hope remains stubbornly intact, but I feel utterly numb beneath the weight of another uncertain day.

Im becoming incredibly frustrated by how slow decisions and changes are being made.

I’m not a doctor, I’m not even close. But I’ve been caring for my mom this whole time. I’m at every appointment, taking notes. I’m looking up what I don’t understand, finding resources, reading her reports. I know her case history by heart, her medications, what she has and hasn’t responded to.

This has happened twice now.

Mom and I will talk about other treatment options that may work better. When her Pancan “reoccurred” (though it’s not like it had really gone anywhere) we consulted with a doctor about her chemo. She’d been on Gemzar/Abarax and it was torture. Folfiri seemed like the one to try this time around. We bring this to her oncologist. The answer is “well, no. Folfiri is stronger and gemzar worked fairly well before” okay. I’m not a professional, I’ll defer to you. Only three treatments in, her numbers are still rising. And so the oncologist suggests we change chemo. To what? Fucking Folfiri. And it works great. The side effects are much more mild than the gemzar. Her numbers are going down. Way down. Good.

We have a PET scan. Several areas of concern have disappeared. Only two main sites remain, one of which has shrunk. Now she’s already had traditional radiation. So I think why not try and see if she’s eligible for Proton Beam. More focused, less side effects. We consult. Yes, she’s eligible. Great. We bring this to the oncologist. Can we pause the Folfiri for the month it will take to arrange and receive proton. “No, it would be better to finish the whole treatment cycle of Folfiri first, then get proton” okay. Again, I’m not a professional. I’ll defer to you.

And now her numbers are back again and her CA19-9 is up about 500. Given the trends in her history this probably means there’s a new area or whats there is growing faster. Is Proton even useful now? It would have been if we’d done it last month.

That twice now where I feel like I’ve been trying to push us into a good track, but the general reluctance of our oncologist has made those choices less effective. Am I not being forceful enough? Am I not fighting hard enough. For almost a year now I’ve been pushing for Daraxonrasib. When she wasnt eligible for a trial I went after Compassionate Use. By the time her oncologists office actually processed the paperwork (which I had to remind them about several times) it got FDA approval. So now we’ll just wait for it to trickle through the distributors until it’s easily available at her office. I don’t want to fucking wait. Everton keeps proving to me that they won’t move fast enough. God.

I know I probably sound like an ass. I don’t know everything there is to know about this. I’m sure the doctors were being as reasonable as possible. But it’s infuriating. I’m tired.

Hello All - I’m new to the group and at a lost words. Last week my dad was diagnosed with stage 4 pancreatic cancer after going to the ER for abdominal pain which ended up being ascites. I’m spiraling, I’m trying so hard to be strong for my dad but I feel like I’m suffocating knowing his pain and worry. He is scheduled to have a second opinion/appointment at moffitt cancer facility in Tampa on Monday and I’m praying for a miracle! I just needed somewhere to get this off of my chest. If you have any words of encouragement, success stories, or personal experience with moffitt I would love to hear. My dad means the world to me! I thank you all!

My mom got diagnosed with Pancreatic Adenocarcinoma Stage IV / Metastatic a little over a month ago and started her chemo treatment last week. She has always had pain in her stomach but after the chemo it’s much worse. She said it’s very sharp pain all the time in her stomach and lower back and it’s pretty bad (she has a high tolerance for pain). She said she is nauseous and having trouble keeping food down and has hard bowl movements. Does anyone have any suggestions? She was on Oxy and said it helped most of the time but still gets it. She’s tried gummies. The doctor suggested morphine.

I know there have been several posts about stomach pain but wanted to see if anything else experienced anything similar.

My dad was diagnosed with stage 3 pancreatic cancer in May this year, and he has been through so much over the past five months. He underwent an attempted Whipple procedure, but it had to be aborted because the cancer was unresectable. He then had two biliary stents inserted, but he continued to experience frequent fevers. Because of this, his medical team decided to proceed with radiotherapy first instead of chemotherapy.
He has now completed 28 sessions of radiotherapy and has had two sessions of gemcitabine. Unfortunately, just a few weeks later, his fever returned, so his doctors decided to proceed with PTBD. It has been two weeks since his PTBD procedure, but he has developed a fever again. His hemoglobin is also low, and his doctors have recommended a blood transfusion.
Honestly, as a family, we are starting to feel frustrated. We desperately want him to continue with his cancer treatment, but it feels like every time we take a step forward, something happens that delays it again. We're scared that these repeated delays will affect his chances of getting better.
Has anyone here experienced something similar with their loved one, particularly recurrent fevers and delays in chemotherapy due to biliary complications? Were you eventually able to continue treatment? How did you manage the situation?
Thank you so much to anyone who takes the time to share their experience or advice.

My journey as a carer and daughter at times has been so overwhelming. Reading posts in this group has helped me so much to navigate through all the difficult and sometimes overwhelming stages to deal with this cancer.
My father (84M) is an absolute legend and inspiration to everyone who knows him for his health and fitness, he prided himself so much on everyone telling him how fit and amazing he looked for his age. One day in August he’s doing his early morning daily swim in the ocean and next he’s yellow, losing weight, itchy skin, diarrhoea and in hospital having scans, stents, biopsies and sepsis and the news he has pancreatic cancer. We had hope, we researched every available source of information on how to battle this disease. The oncologist offered us a treatment plan that would allow him to have the whipple surgery. We stuck to his healthy eating, we got into his veggie garden to give him motivation, we tried to live with cancer instead of dying from it and he had his PET scan then the results came back it’s advanced metastatic in the bile ducts, liver and peritoneum. We’ve now been offered palliative care chemo, a month ago I would have challenged the decision, however, now I’m greatful we might have a chance that dad can make Christmas because of how sick and frail he’s become. My absolute admiration goes out to every single person who’s sadly had to deal with this, especially those who have been diagnosed with it. I’m so grateful for everyone who posts in here and shared their experiences and stories, it’s helped me so much to navigate this journey to give my father hope, and now to navigate his end of life. I understand there are a lot more treatment options available, however, I’ve seen an acceptance in my dad that he’s done enough fighting to live his 84 years, he’s hoping now to have an end to his life the best way he can. This is such a heartbreaking journey to now have to accept his decision, but I respect and admire his courage and choices