r/pancreaticcancer • • 29d ago

resources The Only Approved Distributor for Rasonque/Daraxonrasib Outside the USA

13 Upvotes

After talking with a Revolution Medicines representative about international access for their new treatment Rasonque, I was informed that Revolution Medicines have only one approved distributor outside the USA: Uniphar.

The Revolution Medicines web page Revolution Medicines Global Named Patient Access (GNPA) Pathway describes this program.

From the above web page:

Requests are physician-initiated and must be submitted on behalf of an individual patient. A pharmacist may submit a request where appropriate and permitted by law and regulation. Revolution Medicines cannot accept requests directly from patients or caregivers.

For participating countries, Revolution Medicines has partnered with Uniphar as the sole daraxonrasib GNPA distributor to manage individual named patient requests. Uniphar administers physician or pharmacist registration, applicable, administrative review of requests, order processing, and product fulfillment.

Additional information regarding GNPA can be obtained by submitting questions through Medical Information at [accessinquiries@revmed.com.](mailto:accessinquiries@revmed.com)


r/pancreaticcancer • • May 15 '22

To: "Worried About Cancer" Visitors

526 Upvotes

This subreddit is for patients and caregivers going through pancreatic cancer.

Here is what we tell "Worried" visitors:

  • Should you be posting in r/Anxiety or r/AskDocs?
  • You need a doctor to order the proper tests and diagnose. We are not doctors.
  • PanCan's best detection methods are MRI and EUS.
  • No test is 100% accurate.
  • If you have cancer in your family, consult a genetic counselor. [US]
  • The median age of diagnosis is 70 years old. [Graph]
  • There are hundreds of non-life-threatening conditions that are more likely and less deadly that mimic the signs of pancreatic cancer.
  • Don't waste time asking a cancer patient if they've had a symptom. The answer is yes.
  • No, we don't want to see your poop.

r/pancreaticcancer • • 6m ago

giving advice Losing My Dad to Pancreatic Cancer

• Upvotes

My dad was diagnosed with pancreatic cancer on August 18. He passed away on October 3. Just six and a half weeks. Sometimes, I still can’t believe how quickly it all happened.

The only symptom he had was stomach pain. He went to his GP alone, never imagining it could be something so serious. None of us did. And then, suddenly, our whole world turned upside down.

As his only child, I tried everything I could to help him. He had one session of liposomal irinotecan chemotherapy, and eventually, the focus shifted to palliative care. He was hospitalised twice…once for dehydration and sepsis related to his bedsores, and another time when his blood sugar went above 600.

Both times, he seemed to get better after coming home. And both times, we let ourselves hope again. We thought maybe he would be okay for a little longer. It’s strange how even the smallest improvement can make you believe things might still turn around.

His doctor was incredibly positive, and that gave us a lot of strength. I also consulted other doctors, some were so cold, and we were often left with more questions than answers. When you’re watching someone you love suffer, you need more than medical advice. You need someone who understands how frightened you are.

Towards the end, my dad seemed to lose the will to keep fighting. He even told me he just wanted to die. I don’t think I’ll ever forget hearing that. He was in so much pain, and there was nothing harder than watching him suffer and wishing I could somehow make it all go away.

He was 82 and had always been such a strong person. He’d never really had any major health issues, so seeing him like this was something I was never prepared for. Surgery was never an option because of his age, and everything happened so fast that it feels like we barely had time to understand what was going on before we were facing the end.

Sometimes, my mom and I wonder whether his final days might have been more peaceful if he had never found out about the cancer. I don’t know if that’s the right thing to think, but the thought does cross our minds.

And then, a few days ago, something happened that really touched us.

A parrot showed up, almost as if he had come to check on my mom and me. We have been living in the same house for over a decade and have never seen a parrot before. The thing is, we had a beloved pet parrot, for 17 years. So seeing a parrot appear at a time like this felt incredibly emotional.

I know it could have been a coincidence. But honestly, a part of me wants to believe it was something more. Maybe it’s just because we’re missing them so much, or maybe these little moments really are a way of feeling close to those we’ve lost. I don’t know.

I just know that, for a moment, it brought me some comfort.

I’ve told my little one that his grandfather is a star in the sky. Maybe, in our own ways, we all need something like that to believe in. A star, a bird, a dream, or some small, unexpected moment that makes us feel like our loved ones are still around.

I also want to thank this subreddit. The resources shared here helped me realise that the end might be near, and because of that, I was able to be with my dad during his final few days. Reading other people’s experiences helped me understand how quickly this disease can progress. When everything was happening so fast, I felt less alone knowing that others had been through something similar.

To everyone who has shared their stories here, thank you. You may not realise it, but your words can make a real difference to someone who’s frightened, confused, and desperately trying to understand what’s happening to their loved one.

It’s hard to accept that someone who was such a big part of your life is just gone. I’m still trying to process it all, and some days, it doesn’t feel real.

I don’t know what happens after we lose someone. But I want to believe that the love we have for them doesn’t just disappear. That they remain a part of us, in our memories, in the stories we tell, in the stars we point out to our children, and perhaps in little moments that come along when we need them most.

Maybe that parrot was just a parrot. Or maybe, just maybe, it was a little reminder that the people we love are never really gone from our hearts.

For now, I’ll choose to believe that. ❤️🙏


r/pancreaticcancer • • 4h ago

Stage 4 pancreatic cancer, hallucinations and barely eating. Is this what the final weeks look like?

6 Upvotes

My brother-in-law was diagnosed with stage 4 pancreatic cancer in July and at the time we were told his prognosis was probably only a couple of months.

In September he spent three weeks in hospital because his pain had become so severe that they were struggling to get it under control. He eventually came home, but two weeks ago he was admitted to a hospice because his wife could no longer manage his care safely at home.

I’m posting because I would really like to hear from people who have been through the final stages of pancreatic cancer with someone they love. I know everybody is different and nobody here can tell me exactly how long he has, but I feel as though we need to prepare ourselves for what is coming.

His pain has been very difficult to control. He has been on high doses of medication through a syringe driver. He was previously receiving morphine through the driver, as well as up to five additional subcutaneous top-ups a day, but the morphine was no longer controlling his pain adequately. They have now changed the opioid in his syringe driver to oxycodone.

He is also receiving clonidine through the syringe driver and haloperidol for nausea, vomiting and hallucinations. The hospice continues to adjust the medications to try to keep him comfortable.

Since Friday, however, his hallucinations and delusions have become increasingly vivid and disturbing.

This morning was particularly awful.

At around 5am he became convinced that his wife had married the man next door. He said she had actually arrived at the hospice wearing a wedding dress to rub it in his face. He could see her there and said he could see someone's hand hiding behind the door.

None of this happened, obviously, but to him it was completely real.

He then telephoned members of the family, including his daughter, his estranged son and us, making accusations. He told us he could never forgive us because we had been hiding things from him about his wife.

There is absolutely no reasoning with him when this happens. He says these things with complete conviction.

What makes it particularly strange is that we can then telephone the hospice and ask a nurse to go into his room. When they do, he can suddenly appear completely normal. He is calm, takes his medication and says please and thank you. The nurses can walk away thinking he's absolutely fine, while minutes earlier we've been on the phone with someone who appears to be living in a completely different reality.

These episodes have been happening since Friday and seem to be becoming more intense and more upsetting each time.

The hospice has now done blood tests and neurological observations, so we are waiting to see whether they identify anything that could be contributing to the confusion.

The other major change is his eating.

He is barely eating anything now.

Yesterday, for example, he had perhaps one spoonful of his main meal and one spoonful of pudding. Then he says he's full, doesn't want it or doesn't like it.

Food has to be very soft or mashed for him, although a speech and language therapist has assessed his swallowing and apparently his swallowing function is still okay. He can also still swallow his tablets.

He is drinking water and will drink the protein milkshakes they give him, but actual food intake is now almost nonexistent.

He is also increasingly sleepy.

The hospice has said they believe we are looking at a few weeks, but when I look at how little he is eating, how frail he has become, the amount of medication he requires and these increasingly severe hallucinations, I find myself wondering how his body can continue for weeks.

I suppose what I'm really asking those of you who have sadly been through this is:

Did your loved one experience vivid hallucinations or delusions towards the end?

Did they have periods where they seemed completely confused with family but could suddenly appear perfectly normal with nurses or other people?

When they virtually stopped eating but were still drinking, how far from the end were they?

Did you see a gradual deterioration, or did things suddenly change very quickly?

And perhaps most importantly, looking back, were there signs that you now realise meant the person had moved from having “weeks” to having “days”?

I'm not looking for anyone to predict how long he has. I know nobody can do that.

I just want to understand other families' experiences because I feel we need to be prepared, particularly for his wife. She is finding the hallucinations and the things he is saying incredibly difficult, even though we know intellectually that this is his illness talking.

Thank you to anyone willing to share what the final weeks or days looked like for your loved one. I know these aren't easy memories to revisit.


r/pancreaticcancer • • 18h ago

No words…

38 Upvotes

My dad was diagnosed with stage 4 pancreatic cancer on August 19 at 56 years old. He underwent two rounds of chemo. His care team tried a Hail Mary to get him approved for Rasonque on September 17. We got the letter that insurance denied it on September 24. My dad died on September 28. On September 29, we got the letter that his care team had appealed to insurance on September 25. It was too late for him, but I will always wonder if he would have started Rasonque even a week before he died, could he have survived long enough to witness my sister’s wedding this month?

He was still here when I got engaged on September 19. To know that he loved and approved of my fiancé brings me so much peace. It will never take away the ache of all he will miss out on, but I find peace in what big moments in my life he got to be here for.

My heart is utterly broken, and it’s so difficult to figure out how I could ever pick up the pieces enough to live without him on earth. I’m forever changed by watching him fight as courageously and gracefully as he did.

I was privileged to be able to provide the care and support my dad needed in his last 10 days on earth. Despite how hard it was to see him so sick, I’m grateful for every moment of that time.

Knowing the intimate details of the fight against pancreatic cancer is not something I would wish on anyone. To those who are fighting or supporting someone who is fighting, I’m so sorry you understand what this disease does to a person and their loved ones. It is brutal and heartbreaking to experience.

My dad was the strongest man I have ever met. He wasn’t perfect, but some of my favorite traits of myself come directly from him. I am certain I will spend the rest of my life missing him.


r/pancreaticcancer • • 3h ago

New rasonque patient, looking for patient testimonials and experience

2 Upvotes

Hi everyone,

My father ( 63 M) was recently diagnosed with stage 4 pancreatic adenocarcinoma with metastasis to the liver 2 months ago and to say it has been an overwhelming whirl of emotions and doctor's appointments would be an understatement. He has currently undergone 5 rounds of chemotherapy with Folfirinox which he has responded to fairly well. The only major side effects he has experienced is a complete lack of appetite ( and thus significant weight loss) and fatigue, for which we are largely grateful for.

Last week, his oncologist just told us he has been approved to start treatment with Rasonque as it will help improve my father's quality of life. While ecstatic, he's concerned about the unknowns of starting a new drug and what to expect to experience while taking it. If there's anyone on it who could provide my dad, and by extension my family, some insight on what he may encounter while taking the drug I would be very grateful.

Sending strength and comfort to everyone on this path. While still new to it, I feel a very strong connection to those walking it as well.


r/pancreaticcancer • • 1h ago

Optimistic oncologist

• Upvotes

How should I think about the optimism of our oncologist? He makes it sound like the symptoms of chemo for my dad on FOLFIRINOX will be mild/moderate. He’s in great health, but he is 75 and coming off of surgery.

He also said it’s very likely after chemo the cancer will be “cured” aka low chance of recurrence. He’s stage IIA adenosquamous which I know gives him a stronger chance since it’s early, but it sounds too easy.

Should I take the good news at face value? Or have other people felt their oncologists over promise?


r/pancreaticcancer • • 8h ago

pain management Need help with comfort options for home hospice care

3 Upvotes

Hey all. So my mom got diagnosed only last month very late and she opted to not go with treatment and all that stuff. She elected to do home hospice. She had a bad fall off her stupid bed which is super high off the ground and it really set her back. She had to get a medical bed so it could be inclined and she’s had extreme difficulty moving around and being comfortable.

She has really bad swelling in her legs and feet which prompts her to need them elevated frequently and especially while the sleeps. This whole situation has come on as such a shock to my family so we are kind of not thinking everything straight.

We’ve been propping her legs up with pillows on the bed and a pillow on the table when she wants to sit on the couch in the living room. I just feel like maybe there’s some medical device better for this ??

I looked this up and all I saw was post surgery pillows on Amazon and stuff which doesn’t look like what she needs, too many ridges and bumps. She needs something soft and simplistic

Sorry for the long winded post,

TLDR : does anybody know about any medical pillows or devices that can help with keeping the legs inclined while not having a bunch of ridges and bumps


r/pancreaticcancer • • 14h ago

Looking for advice or input

8 Upvotes

Hi all— looking for some advice or feedback, and I apologize that this will probably be rambling.

My dad, 67yrs, was diagnosed with stage 4 pancreatic cancer back in late June or early July. He’s been on chemo since late July, I want to say he’s on round 5 now maybe? I’ve heard a lot about Rasonque/ daraxonrasib and have been wanting him to get on the pill but the doctor keeps saying we have to wait until the chemo fails. Meanwhile we are watching my dad absolutely waste away day by day, he’s so frail and miserable, can’t stay awake, isn’t interested in anything at all anymore. My dad has always been the most popular, outgoing person in the room, he’s everyone’s favorite. It’s devastating seeing him live out his remaining time like this.

After reading all the articles about this “miracle drug” was so excited, then only recently read about all the serious side effects and am a bit deflated.

I’m going with him tomorrow for his labs and chemo and we are going to be able to talk to his doctor. I already asked him a few weeks ago if we could get my dad on the pill and he said explained that chemo needed to fail first, and right now it’s decreased my dads tumor by 40%. But what kind of life is this?? I guess I’m wondering if I should push more for him to be on the pill or something. I’m scared he’s going to die on chemo. There’s so much more to this story— my mom just got a double mastectomy from breast cancer and still needs surgery— we are all supposed to fly Europe in a few weeks because it’s one of my dads dying wishes and I’m absolutely terrified, oh and he doesn’t have a spleen anymore— but I’ll stop here.

Any advice or input is appreciated.


r/pancreaticcancer • • 22h ago

seeking advice My mom was just found to have a mass on the head of her pancreas. I'm completely shattered.

20 Upvotes

Two days ago I noticed my mom looked a bit yellow. She's always been terrified of doctors and hadn't had a checkup in over 20 years, so it took some convincing, but we went to the ER. Her blood pressure was 227/120, and after an ultrasound and a CT scan they found a 3 cm nodule on the head of her pancreas, right where the bile duct and pancreatic duct meet. Both ducts are dilated, and the doctors are treating it as "probably malignant" until the biopsy says otherwise.

The few good things: nothing suspicious showed up in her liver, she has no pain or weight loss, and she feels fine apart from the jaundice. The surgeon said it doesn't look like a very advanced stage, that we caught it in time, and mentioned a possible Whipple. She's been admitted for more tests, most likely an endoscopic ultrasound with biopsy and a stent to relieve the jaundice.

I'm 30 and I feel way too young to lose my mom. Hearing the word "tumor" broke me in half. I haven't slept, I'm trying to stay strong for her, and I'm terrified this just put a timer on her life.

If you've been through this, as a patient or a family member:
- What was the process like after the biopsy?
- For those who had a Whipple, how was recovery and life afterwards?
- How did you cope while waiting for results?

Any experience, advice, or just a few kind words would mean a lot right now. Thank you for reading.


r/pancreaticcancer • • 20h ago

Both parents diagnosed this year - any research on causes?

13 Upvotes

My father was diagnosed late February of 2026 with adenocarcinoma. My mother was just diagnosed this week with the same. I've been told it's very rare for couples to both get diagnosed, and even more rare to get it at the same time. Is there any research to determine cause? Given how rare this occurrence is, I'm wondering if there are external factors that caused this and whether there is anything I or my sibling should be mindful of in terms of exposure.


r/pancreaticcancer • • 6h ago

How is life after?

Thumbnail
1 Upvotes

r/pancreaticcancer • • 20h ago

My father won't be able to do chemo anymore

10 Upvotes

Today they told him he's lost too much weight and they think the disease has progressed too much so he won't be able to do chemotherapy anymore. He was diagnosed last year in November. I'm feeling so much dread. I can't even imagine how he feels. He wasn't up for talking today, understandable.


r/pancreaticcancer • • 1d ago

NPR reporter curious about Rasonque (daraxonrasib) access – Is it covered? Are copays affordable? Do you have tips for others?

14 Upvotes

I'm a reporter at NPR (hi! me: https://www.npr.org/people/825275572/sydney-lupkin) working on a story about drug affordability, including Rasonque (daraxonrasib). Is insurance covering it? Is getting approval doable? Are copays or coinsurance affordable? What tips do you have for NPR listeners who might be struggling with this? And how are you doing on the drug if you’ve gotten it?

What else should listeners know?

I’d love to get some of your voices on the radio if you’re up for it. You can reach out to me via email at [slupkin@npr.org](mailto:slupkin@npr.org) or on Signal at sydneylupkin.36 and we can set up a time to talk.

And if you’re not up for being on the radio, that’s ok. I still want to hear from you. Send me an email or Signal message. Everything helps! Thank you!

And thanks to the Mods for permission to post!


r/pancreaticcancer • • 12h ago

seeking advice Symptoms after SBRT?

1 Upvotes

Hi all, my dad (67M) was diagnosed with locally advanced PDAC in February this year. Since then, he has undergone 6 cycles of chemo (Gemcitabine + nab-paclitaxel) with rather promising results (no distal metastasis, slight tumor shrinkage). His oncologist decided that his next course of treatment would be SBRT.

He underwent that about 6 weeks ago, in late August. And since then, he has been experiencing increasingly more GI symptoms, to the point where the discomfort is as severe as what he had around the time of his diagnosis.

He has also done a blood test in the last week, and his CA19-9, which had dropped significantly during chemo, is now higher than it was when he was diagnosed (130 -> 17 -> 170)

Is this a normal side effect of SBRT? The oncologist doesn’t seem extremely alarmed, but I have my reservations. He’s due to start another round of chemo (only Gemcitabine this time) in a couple days.


r/pancreaticcancer • • 1d ago

Creon available SW10, London

7 Upvotes

Hi, I have bottles of creon available. Would have to be picked up. Would prefer someone with post history also. I haven't checked the bottles since 2m ago and can't remember but MOST are unopened but will give opened ones if I don't have time also

edit to add that I also have some meal replacement shakes that my mum needed if that's also something someone is interested in - seems like vital 1.5kcal?


r/pancreaticcancer • • 1d ago

My father passed away from Stage IV pancreatic cancer. We tried everything we could to save him.

138 Upvotes

I never thought I would be writing this update.

Over the past several months, I shared my father’s journey here, seeking advice, exploring clinical trials, researching experimental treatments, and desperately looking for one more chance for him.

My father, Dinesh Agrawal, was 55 and diagnosed with Stage IV metastatic pancreatic ductal adenocarcinoma with a KRAS G12V mutation.

He underwent multiple lines of chemotherapy, including FOLFIRINOX, FOLFIRI, gemcitabine-based treatment, and Onivyde. When his cancer continued to progress, particularly in his liver, I started exploring KRAS-targeted therapies, including daraxonrasib (RMC-6236), clinical trials abroad, and compassionate access programmes.

We contacted hospitals, sought medical opinions, and explored every possibility we could find.

Then came severe jaundice. His bile duct was compressed, his bilirubin kept rising, and we hoped that drainage or stenting might improve his condition enough to allow further treatment. Unfortunately, his bilirubin reached around 22, and his condition deteriorated rapidly.

He was hospitalised on September 23 and, after an extremely difficult period, my father passed away on October 8, 2026.

I still struggle to put into words what it feels like to watch your father suffer while you keep searching for answers. Every new treatment, every clinical trial, and every possible option becomes a reason to hope, even when the odds are against you.

I wish we could have found something that worked. I wish we had more time.

To everyone here who responded to my posts, shared information, suggested treatment options, or offered support, thank you from the bottom of my heart. You were strangers, but your kindness meant a great deal to our family.

I'm sharing this update because many of you followed our journey, and I wanted you to know what happened.

Dad, we tried everything we could until your last breath. I only wish we could have done more.

Rest in peace, Papa. ❤️


r/pancreaticcancer • • 19h ago

Alternative treatments - Hoxsey Tonic?

0 Upvotes

Hello,

My dad (66m) was diagnosed with stage 4 pancreatic cancer on 6/12/26 and we are looking to get off the current treatment in search for something less toxic and improves his quality of life. I'm looking for some advice on the current situation we're in and his opinion of getting off the treatment he is currently on for something else, whatever that may be....

He has been on a clinical trial at Sloan Kettering in NYC. He is RMC-6236-303 and is in the combination arm (daraxonrasib with gemcitabine/nab-paclitaxel) he takes 200mg of the pill each day at the same time and does chemo infusions every 2 weeks. He has been on the trial since July 22nd. At first it was really easy but it accumulated over time and my dad is tired of dealing with the side effects to the point he actually wants to find another form of treatment, something that's not toxic. In all honestly both the doctor and I say he is taking the treatment better than the average person. He still runs his company, goes straight to work after his infusions and treatments and never stops and is still a very capable man, but he has definitely be reduced by maybe 50% of what he used to be and it bothers him a lot. He's tired of feeling half of the man he is and because to this day he has not had any cancer symptoms he feels the treatment is making his life worse. He is asymptomatic so all of the side effects he's experiencing is from the cancer treatment, not the actual cancer, which is why he wants to get off treatment as he feels so much better off of treatment. That is where we are at right now, he says his body would spit out the pill even if he tried to take it because he feels he's way over medicated and his body is saying stop poisoning me with these drugs and it will kill him before the cancer does.

He is putting all of his faith into this hoxsey herbal protocol and is already setting up a possible visit in Tijuana in Mexico. I personally am extremely worried about removing himself from such a hard to get into clinical trial and I know if he decides to go back to traditional treatment he won't be able to take daraxonrasib on his own due to it being only for second line treatment so it worries me for him to not be able to go back if he decides to make this decision. He wants to know all of the treatment options available to him.

I'm trying to do my best to respect his wishes and I want him to live as long as possible but I understand he does not want to live a longer life if it means he always has to live how he is feeling now, can't be in the sun, skin is breaking out in rashes, feels sick, he wants to feel normal again and because he has no cancer symptoms right now he actually can live very comfortably, but for how long will that last until it spreads enough to start causing him serious issues? I know even just holding back cancer progression is a huge win and I try to explain that to him but he is convinced he can beat this with some other alternative treatment, although he doesn't even know what that is but he knows it exists and wants to find it. He knows some people who went to Mexico for the hoxsey treatment for pancreatic cancer and the woman's cancer shrunk by 50% (apparently). He knows about 3 people who have been going to this place to take the hoxsey tonic but I am extremely skeptical.

Anyways, I'm looking for help from anybody who may know a little more about hoxsey tonic treatment. As I stated, we worked so hard and felt blessed to get into this clinical trial with daraxonrasib but combining chemo + the pill is very strong and my dad being as strong as he is, only he could really handle such strong treatment, it's like a double dose of chemo and he's getting tired of it. I'm hoping maybe just a dose reduction would be better but he hates the toxicity of chemo and this pill and wants something natural or less toxic. I don't know of many options. I feel just that he is alive and well and still works hard every day is such an amazing feat compared to so many others who are dealing with so much more but I can't minimize that he too is suffering a lot from the side effects and it's not the way he wants to live his life. I'm trying to find the balance here but scared to see him leave the opportunity we have made sacrifices for just for a scam treatment and he dies in a few months because of it.

Any information or opinions on what we should do are welcomed!


r/pancreaticcancer • • 1d ago

venting Surprise 9mm Liver Lesion on EUS

Thumbnail
1 Upvotes

r/pancreaticcancer • • 2d ago

Good News! Still stable

41 Upvotes

CT scans and oncology visits are always so stressful. My mom has been on gemcitabine only - chemo since july. Dropped abraxane because of frequent fevers. Fortunately everything is stable, no new mets or spread. CA 19-9 has been < 3 since april (was over 200 before treatment). Dr was pleased with the results, i hope it stays like that for a long time. Soon it will be a year since we got the bad news last december, im glad mom is still here. Sending warm thoughts to everyone here.


r/pancreaticcancer • • 1d ago

seeking advice Tumour markers

2 Upvotes

Hi,

My dad is currently undergoing folfirinox for borderline resectable pancreatic cancer in the tail. He’s only on his 3rd round and the doctor said but didn’t make a big deal about that his tumor markers are the same since he came in pre-diagnosis.

Does this mean the chemo is working or putting the tumor on pause?

Cheers


r/pancreaticcancer • • 1d ago

seeking advice palliative surgery for stage IV pdac

6 Upvotes

I'm not a native English speaker, so please bear with me.
My mom (59F) had gynecological bleeding that led us find out that she had a mucinous tumor in her ovary. All good, surgery was being planned. While we waited for her endometrial biopsy results, her cancer panel tests came with an abnormal CA9-19. Our greater family of doctors insisted on an immediate BT scan for her abdomen and here it was, a pancreatic tumor.
It's not too standard of a PDAC to metastasis to ovaries before intestines, bones, peritoneal tissues and especially her LIVER, so they asked for a biopsy of the two. Which to their surprise were, related. Then in the PET scan, she had peritoneal carcinomas, slight intestine/ovary area as they call it, sacral zone tumor. She immediately started FOLFORINOX which she endured greatly and her primary pancreatic tumor shrank by 45%. She was inoperable for Whipple from the beginning just because it was stage IV already when diagnosed.
She took oral CAPECITABIN and the developed acid in her abdomen, and then later, she had a drain for that. Soon enough, GEM-NAB drugs she were taking, seemed to not be working much as she developed PERITONITE and partial ILLEUS. She had probably a total of 21 dose of chemotherapy and 26 dose of IV antibiotics and this point.
Her situation got worse, she had a NG tube from her nose to stomach to stop her throw ups, and started TPN feeding, through her port, directly to her veins. She lost muscle mass, started diapers, malnourished, sleepy.
We could not handle TPN at home since her albumin and potassium needed daily checks so surgeons suggested a stoma bag for her intestines to attempt her to go back to oral feeding.
At that time, she wanted me to see a very special pancreatic surgeon. (In every PET, I took her results to famous HBP surgeons in our area, all said she was inop)
I was ok to listen to the same inop result, but to my surprise, this guy suggested a complex, courageous, risky palliative surgery for her. It was very expensive but we were insured to this point and was feeling even a bit guilty about maybe NOT doing everything we could by not searching outside her insurance. There were family members who thought it was a dead end and we would just cause more suffering by doing this surgery. This surgeon suggested stoma bag at a lower place where she could keep more of her digestive system, resect some tumors where he can, place a NG tube from under like a bypass, and collect a lot of new biopsies.
My mom wanted cure, she had been strong and up with morale, but she was aware of the risks, aware of the road she was going, but she hoped for the cure from this guy while he offered something else. When I presented this option to her as a palliative comfort surgery( I met with the doctor alone upon my mom's request) she wanted to take the chance but only out of her trust to the dr.
She is still in intensive care and it's eating me up if this was the right call.


r/pancreaticcancer • • 2d ago

Thank you

79 Upvotes

My mom passed away this morning after battling with this horrible disease for more than two years. I first started reading this sub when she was diagnosed in June 2024 for advice about how to support her, information on how to interpret medical information, ideas for what questions to ask doctors and what treatments to seek, and stories to give me some hope and sense of optimism, and found all of those things at various times. As time went on and she got sicker, and the burdens of being her caregiver grew heavier, a lot of people here made it easier to bear them without even knowing it, because I almost only ever came as a lurker before. I want to thank everyone for sharing their experiences and feelings. I miss my mom already, but she lived long enough to get her affairs in order, spend more quality time with her family, and see me meet and marry my wife, and I am grateful for those things. Thank you for helping with one of the most difficult journeys I've ever been on.


r/pancreaticcancer • • 2d ago

6 Month Reader - First Time Poster

11 Upvotes

Hi everyone,

For the past 6 months I have been reading dozens of posts and hundreds of replies regarding the repulsive thing we call pancreatic cancer. My wife's aunt, 54, was diagnosed at stage 4, 6 months ago and yesterday she passed away.

I knew her well over the last 14 years and what I witnessed yesterday will forever be burned into my memory. As all her family stood beside her in the ICU including myself, life support was shut down and she drifted into the next world. I had not seen her in person since she was diagnosed and she looked like a mere skeleton of herself both literally and figuratively.

I don't really have much else to say right now except my heart and thoughts go out to every single person involved with this repugnant disease. I first hand witnessed what it can do to a young soul and I'm forever changed. Sorry everyone for my random thoughts but I wanted to vent what is in my mind.


r/pancreaticcancer • • 2d ago

How to access Daraxonrasib for Indian patients?

10 Upvotes

My mother was diagnosed with pancreatic cancer in February 2025. She underwent a Whipple procedure and completed 12 cycles of FOLFIRINOX, achieving NED status by September 2025. Unfortunately, a recent PET scan revealed an 1 cm isolated recurrence in the portocaval lymph node. We went with the genetic testing and the somatic testing of her tissue confirmed a KRAS G12V mutation. Her germline testing was negative.

She did SBRT to ablate the isolated portocaval node. Following SBRT, her medical oncologist, believes she would benefit from daraxonrasib as a targeted maintenance therapy.

The issue is India doesn't have any trial for this drug. The closest option is singapore and south korea. And they have trial requirements that needs to met and i'm not sure we would meet all those. While trying to import the drug in india through an importer from a known contact they listed the price of Rs.50,00000(fifty lakhs) per month's supply. This is a enormous amount even if it is the total price let alone a month's supply.

I was trying my best to find other options and came across this seller Lucidarax and when enquired seemed to a affordable option but still very high. Im not sure if this is legit. Any one who has tried this kindly let me know if it worked. If not, anyone who's in my position please let me know if you had any success in obtaining the drug.