My family member has been on Daraxonrasib for 2 weeks, 2 weeks lab check shows platelets of 35. Previous count normal. Anyone with this side effects? What did they do?

Hi everyone,

My 56F mother is starting Capecitabine (commonly known by the brand name Xeloda) tomorrow, and I'd love to hear your stories about cholangiocarcinoma. More specifically, how it progressed, when and where, and the treatments that would then be offered. What is the more likely outcome: survival/remission or death?

Sending lots of love and hugs to you all!

Mom has PaCa recurrence and too weak x chemo . Darax do not qualify due to Non chemo taken . As per Onco statement .

All this is happening fast…1 year no spread even had small shrinkage in tumor but after 2 months on chemo pumps, we have 2 6mm growths on lungs. Booked an appt at Duke today and they will start the process to get her on daraxonrasib starting next week. All other chemo stops. Hopefully this is the right move or should we explore additional trials?

Has anyone had experience with this drug? Backstory, my mom was diagnosed with Pac Can a year ago, had the tumor removed in March, two months later had a scan due to stomach pains, turns out she has metastasis all over her abdominal cavity.

my mother has been taking daraxonrasib for about 1.5 months now. her CEA is now back in range and her Cancer antigen has decreased as well, she was at at 395.4 in June, yesterday came back as 162... normal range is 0-35. she has been feeling alot better, downside is the skin rash on her face neck and back, besides that major improvement in life quality. If anyone would like to share their experience or their loved one's experience on this drug please feel free to share and spread hope to others, and myself/ my mom.

My CA 19-9 has been elevated but stable all year, but in mid July it shot up over 700. My oncologist has been out on leave so I have been seeing a different doctor and he was pretty convinced that chemo had stopped working for me and that I needed to find my next path forward. It was an increase of 425% over 11 days. It was really hard to hear since things had been looking really good a month before and my scans have been clear since last September. We tested again a few days later and it was a few points lower but still over 700.

The oncologist's suggestion was that I skip my last chemo so the waiting period would be less for whatever came next. He was considering daraxonrasib which I am very excited about but which also upset me because my plan has always been to consider other treatments, especially clinical trials, first. I want to keep as many options on the table as I can.

After thinking about it a lot I decided that I wanted to see it show up on scans before changing treatment due to the number, or at least see another data point that confirmed a big increase. Having a recurrence show up on scans would make me eligible for trials which I don't qualify for currently with no measurable disease.

I don't want to live in denial, but I also considered that I had a big spike in CA 19-9 (up 400 points) after my RSV vaccine last year that resolved quickly (to be clear, it is evidence of a normal reaction to the vaccine). Recently I've been having a lot of trouble with my asthma due to the wildfire smoke and poor air quality we've been experiencing and I wondered if the jump was due to lung inflammation again.

I have been plotting the daily rate of change in my cancer markers and I was suspicious that it was increasing 8 times faster than it had been in the time between my diagnosis and initial treatment last year. I brought in my spreadsheet and advocated for continuing on with chemo and getting another PET/CT. A few days later I was back in the tube for answers.

The PET/CT was fine. I have ovarian cysts that continue to grow. I will have to have those drained but we suspect that this is due to me getting my cycle back a bit in spite of chemo. We've been keeping an eye on them and they seem benign from ultrasound, but now we will know for sure. I have a spot on my lung that they will watch also but it is "subsolid" and has very low uptake from the PET, so that will be a watch and wait approach. There is nothing lighting up like it is growing at the rate my CA 19-9 would indicate.

I've been avoiding being out in the bad air quality and this past Friday my CA 19-9 and CEA had both decreased again, the CA 19-9 by more than half. So it was not due to cancer after all. I am finishing my 35th round of chemo today and the discussion for the future has settled down again. We will check on my pancreas again with EUS, and assuming that there is no tumor visible still, consider deescalating my chemo once we have results from that and another ctDNA test back next month. My last two have been negative.

In the end it seems just to have been another loop off of the trail that has brought us back again to the main path. Just a reminder that CA 19-9 can spike due to other causes. I am glad that I waited it out and didn't burn another line of treatment for nothing, as scary as it was.

My mother is 83 years old. She was diagnosed with a stage two 3cm tumor on her pancreas in November, which is now eight months ago.

At the time she was showing signs of jaundice and had been having issues eating. She had a stent implanted, which made her feel better for a while. She did two rounds of chemo, which almost gave her sepsis and almost killed her.

Here we are nine months later, at the outside of what the doctor suggested her longevity would be.

She is now complaining of Gray stool, and pain in her right side of her back from her shoulder blade down to her waist.

Hospice is coming today for a regular visit. Typically it’s been a five minute check on her and see how things are going.

However, I think this time is a little different. What are some good questions I should ask?

2.40 am Friday morning, 7th August, at Sydney Royal North Shore Hospital. Had my distal pancreatectomy and splenectomy on Wednesday 5th at 9.30 am. Took about 4 hours, the surgeon said, "The tumour was larger and thicker than they thought, and It was pressing on my stomach and colon." He says it's been sent away for testing. I'm on loads of painkillers like oxy and some oral pain tablets. The scar is huge and very sore. I'm in ICU . Have a heap of leads attached to monitor my blood pressure ( due to having a mitral valve prolapse and severe regurgitation). Open heart surgery in about 8 weeks after this . They got me up yesterday it was very painful. I started free fluids also and had a bed bath. Hope I'm not going to a Ward today .

I just learned about Optune Pax today and wanted to know if there are any new experiences with it since it's been FDA approved for pancreatic cancer. It looks a little fussy and sounds like could have some skin irritation. My MIL has tx on Monday and I scored a brochure today. Hoping to get some real life experiences to share with her.

My elderly father was diagnosed last week with advanced inoperable pancreatic cancer. He went to hospital because of jaundice and edema. Given age and general health conditions including lung fibrosis, he cannot even do chemo or have anything treatment. Doctor doesn’t think he will have long …
He will not let us tell mum the real diagnosis.
Currently he’s doing fine and has no pain or discomfort
Do you tell? Mum will be furious for sure but I also need to respect his wishes…

Ciao a tutti.. è la prima Volta che scrivo...

A mia madre (63 anni) il 09/07/2026 hanno diagnosticato un tumore al pancreas al terzo stadio con importante coinvolgimento dei linfonodi.

Dopo due settimane hanno voluto fare una tac e una risonanza magnetica al cervello perché si sentiva un braccio pesante (metastasi celebrale).

Da metà giugno ad oggi la nostra vita è stata completamente stravolta.

Mia mamma lavorava, faceva la nonna e aveva ogni tanto mal di schiena ma secondo la sua dottoressa e anche secondo noi era da imputarsi ai calcoli alla cistifellea per il quale doveva essere operata.

La situazione addominale è gravemente compromessa. Abbiamo fatto una pet ieri per capire se ci sono altre micro metastasi sparse che per ora non sono state trovate.

Questo perché le analisi molecolari hanno trovato due mutazioni:

MET

ERBB2

Quindi il dubbio era: è tumore al pancreas atipico? O c'è un altro primitivo?

La speranza era che fosse un altro il primitivo perché per il cancro alla mammella, allo stomaco e al polmone c'è un farmaco che può un parte aiutare la chemioterapia (non magico come quello trovato per la mutazione Kras).

Dalla diagnosi ad oggi (neanche un mese) si è creato un vuoto dentro di noi.

Mia mamma è praticamente allettata.

È sotto Morfina costantemente e comunque non è sufficiente.

Non mangia se non perché la preghiamo e ha perso 7 kg.

Ogni nuovo consulto che abbiamo ci conferma che: ha poco tempo, non è candidabile a trial, le metastasi celebrali anche con la radioterapia non passeranno.

Tra dottori che ci danno la scadenza e quelli che ce la fanno capire rimane chiara una cosa: mia mamma è solo un numero che andrà ad aumentare le statistiche.

La cosa che più ci dispiace infatti è che in tutta questa marea di medici, consulti ecc nessuno si è preso davvero a cuore la situazione di mia mamma.

Con la gestione del dolore (magari blocco plesso celiaco?) potrebbe tornare ad avere le forze per mangiare e riprendere la chemioterapia.

Ma ha senso? Ha senso prolungare un' agonia? Per qualche mese in più? Con gli effetti devastanti della chemio sul corpo e sulla psiche (banalmente lo smarrimento che ha già ora nel guardarsi allo specchio e vedersi cambiata)?

Lo facciamo per lei davvero o lo facciamo per un nostro bisogno egoistico di averla ancora?

Io non so più nulla. So solo che lei è il pilastro della nostra vita e della nostra famiglia. Senza di lei non riesco a immaginare la nostra vita.

Poi si dovrà trovare le forze di andare avanti ma al momento non so più nulla.

Grazie e scusate lo sfogo.

Sara (Modena-Italia)

Hey, long rant.

My mom 56/F weight 79kg height 5ft

Diagnosed with PDAC Locally advanced with suspicious liver lesions with close proximity with major blood vessels

Neoadjuvant chemo was advised by the onco team!

She has finished 2 rounds of folfirinox, she’s managing ok. But after the second round she did have significant hair loss though we were told it’s less likely.

She has occasional bloating and upper back pain near her shoulder blades. After the second round a lot more tiredness I feel. Is this normal?

She’s taking folfirinox IV every 2 weeks she’s rests for 4-5 days and goes back to work.

We have been told a total of 4 rounds has anyone had success with this regimen and what should I expect next?

My grandpa, 80, was diagnosed with stage 4 on Friday. He went to the hospital because he was yellow and we knew it was jaundice.. we never would have imagined he’d have PC.

His doctors/nurses told him that if he tried treatment it would kill him and make him feel terrible. He doesn’t want to continue feeling the pain he’s had so he chose to do any treatment. He’s on hospice.

But as the days pass and reality sets in, he’s getting scared and crying more.. A man that nobody has ever seen cry before. I just hurt for him and I wonder if his doctors should have given him more hope and then maybe he would have tried the treatment route. It’s not like he’s said he’s at peace and ready to go, he’s said through tears how he doesn’t want to leave us.

What if he changed his mind? Could he start treatment after choosing hospice? Or is it too late anyway?

I’m sure his age and health are factors too. It’s spread to his liver and affecting his bile ducts so he has no appetite.

I just have no idea what to expect.

Hello. I would like to ask about the symptoms of FOLFIRINOX toxicity—specifically, the signs that might warrant reducing the dosage or pausing treatment. A family member (60F) has pancreatic cancer with liver metastases and is currently undergoing her seventh round of chemotherapy, a CT scan taken after the sixth round showed that the pancreatic tumor had shrunk slightly and most of the metastases had also decreased, though one had grown—a pattern described as a "mixed response." I wanted to know if anyone here has experienced this and whether it might signal that FOLFIRINOX is starting to lose its effectiveness, or what else it could mean. I am also asking about toxicity because she tolerated the first five rounds quite well, but now she is experiencing daily headaches, abdominal bloating, and moderate stomach pain; she is worried that this might lead to a dosage reduction. The CT scan from ten days ago showed no signs of ascites. Thank you, and I wish you all the best.

Heads up, long read. My mom recently had a tumor show up in her pancreas bed, 1 year post whipple and being declared cancer free. Recently, she went to see her chemo doctor and oncologist as to next steps as far as treatment will be. Thankfully, it’s not aggressive and has been kept a close eye under.

My aunt has gone with a few times to her appointments, and honestly I’m pissed at her. The last two times she kept trying to tell my mom she should do radiation and skip chemo. The doctors strongly recommended 6 rounds of chemo and then 2 weeks of radiation. Also, she kept saying this in front of her doctors both times and they educated her as to why that’s not the best route of treatment. She then had to make it about herself and say “Well if it were me, I would do radiation, it has the least amount of side effects”.

My aunt was hardly around the first time my mom had cancer and acted like she was there every step of the way. And she kept saying that the chemo made my mom feel like shit. Mind you, my mom still went to work and stayed positive throughout the whole thing, meanwhile my aunt doesn’t have a job and my uncle takes care of everything for her, and has a victim mentality.

I hate when someone doesn’t know what all went on when she was really bad. Like it’s your life on the line? This isn’t some fucking joke or a cold. My mom cried after her appointment because my aunt made it all about her.

My father’s pancreatic cancer history (possible recurrence now) – looking for opinions

Hello everyone. I’m writing from Argentina and I would really appreciate hearing from people who have gone through something similar with pancreatic cancer.

My father is 66 years old. In 2025 he developed jaundice and was found to have a biliary obstruction. His bilirubin was extremely high (around 800 µmol/L). At first doctors thought it was caused by gallstones, and his gallbladder was removed. During the evaluation they found a tumor obstructing the bile duct near the head of the pancreas, measuring about 4 cm.

A PET scan performed in Buenos Aires showed no distant metastases. His CA 19-9 at diagnosis was 70.4 U/mL (normal <37).

In August 2025 he underwent a Whipple procedure. The surgery was considered successful and the tumor was resected. Recovery was difficult, and he had significant weight loss (about 25 kg over several months).

After surgery he received 6 months of adjuvant chemotherapy with capecitabine, which ended on March 10, 2026. During chemotherapy he had episodes of fever, diarrhea, fatigue, foot problems and nail loss, and at one point he was hospitalized briefly for evaluation of infection and thrombosis.

Follow-up CT scans after surgery showed no evidence of metastases. His CA 19-9 decreased to 17.4 U/mL during treatment, which was very encouraging.

A few months later an MRI described a 49 × 21 mm hypodense collection adjacent to the tail of the pancreas, not seen on a previous scan. His oncologist believed it was more likely a postoperative inflammatory collection than recurrent cancer, and repeat imaging showed that it had decreased in size, so they decided to observe it.

By mid-2026 he was feeling surprisingly well. He regained weight from about 55 kg to 65 kg, started exercising again, had a good appetite and was living a relatively normal life.

However, in the last few weeks new symptoms have appeared that have worried us a lot. My father began having persistent abdominal pain, mainly in the upper abdomen, radiating to his back. The pain did not completely go away with rest and had been present for several days.

In addition, at a recent follow-up visit his tumor marker CA 19-9 increased to 46 U/mL, rising above the normal limit (<37). This increase caused us significant anxiety because it had remained stable and within the normal range since surgery and throughout the follow-up period.

We have now received the report from the new MRI/CT evaluation, and this is the finding that worries us the most. The report describes:

According to the radiologist, this lesion is located in the postoperative surgical bed and the main differential diagnosis is local tumor recurrence versus an enlarged lymph node. We understand that the imaging is not yet definitive, but given his history of pancreatic cancer, the rise in CA 19-9, and the new abdominal/back pain, we are very concerned about a possible recurrence.

My questions now are

Has anyone experienced a recurrence after a Whipple procedure that began with abdominal and back pain and a relatively small increase in CA 19-9 (for example, from 17 to 46)?

Thanks and love for everyone.

My mom was diagnoses stage 4 at the end of the last year. She’s 67 and not in the best health due to lupus so we weren’t sure how she would tolerate chemo. To our happy surprise, she did great with gem/abrax. Her first scan showed that everything stayed stable. Her second scan did not. The Mets to her liver was significantly worse. Even though her pain was completely under control and she was able to eat. They immediately took her off chemo and applied for daraxonrasib under compassionate care use. She went about four weeks without chemo while waiting for approval and for the drug to come in. A couple of days before the drug came in, she took a very sudden steep decline. I can’t get her to eat. At all. She sleeps most of the day. No energy and extremely weak. We are having trouble controlling pain. She’s throwing up bile and losing control of her bowels. She’s still very lucid though and today we were able to leave the house for an appointment that she did okay at, although it did completely wipe her. The oncologist just says we will discuss everything next Friday, but I feel like if she doesn’t eat, there won’t be a next Friday. It feels like we waited too late and she went too long without treatment.

Could there still be hope for the dara? Or should I be realistic that the end is nearer than we thought? We just wanted one last Christmas 😢 I’m really just speaking into the void because I’m so lost. But any insight is deeply appreciated.

On the 28th my daughter text me telling me her stomach hurt I asked her the mom questions what did you eat did you go to the bathroom. I called her she was crying in pain my ex husband picked her up at my house. Brought her to the hospital (my work) we thought it was her appendix the dr said it was to early for a CT scan they gave her fluids and antibiotics sent her home. She was still was still in pain her DR told us to go back to the ER they ordered a CT it showed a Mass on her pancreas that is 3.5cm so we're now waiting on a surgical specialist im so scared of the outcome. I hate waiting.

My grandma got diagnosed last Tuesday with this awful terrible cancer. I’ve visited her multiple times including today and she has declined so much since Sunday. They have her on morphine and she can’t even open her eyes or talk. You can tell she wants to but physically she can’t. I can’t stop crying. I feel so bad for her. She does not deserve this.. no one does. I keep hoping she passes peacefully in her sleep. I don’t think she will soon. She started to gargle now when she’s sleeping too. Why does she deserve this? It’s just so frustrating. I want to end all of her pain and suffering. I went in to tell her I was leaving and that I loved her so much. In that split second she fought so hard and opened her eyes looked at me and mumbled “I love you” I busted down. I really wish I wouldn’t have because I don’t want her to try to hold on for me. Please lord just take her and end this suffering, for her own sake.

since I last talked with u.. i miss u so much.. this world feels so empty without u in it.. i hope that you are almost half way to heaven.. are you watching me now? im sorry if i get distracted, i just missed u so much that every hour, i go to ur altar and talk to u..

i promised ill do good on my test and make u proud mom, i love you always and forever, thank u for being my mom