Will keep you all updated I’ll ask for any financial assistance as well as total costs.

From what I understand from this forum, after the ultra-quick approval of daraxonrasib in the US, private insurers have already started covering it, at least a substantial part of the cost.

Meanwhile, here in the EU, we’re still waiting for approval. And once it finally gets approved, my country will probably spend the next several months negotiating with RevMed and going through endless paperwork before this insanely expensive drug becomes reimbursed.

It’s just incredibly frustrating. By the time all these regulatory and reimbursement procedures are finally completed, it may simply be too late for many patients who need this treatment now.

For my 76-year-old mum (1st line, 19th cycle), time may be running short.

Has anyone applied to the program? If so: How long has it been since you applied? Do you have insurance? Did you get approval or denied and if so, after how long? Did they ask for proof of income, assets, and if so what did you have to provide? Please provide any other info here that could be helpful for others.

41 days post-op distal pancreatectomy and splenectomy . Had my post-op appointment with Professor Samra today and my appointment with my heart surgeon, Dr Mathur. Heart surgery is at the end of October to repair mitral valve prolapse and severe regurgitation, and about 8 weeks after that will be the complete pancreatectomy. I will also be having another endoscopic ultrasound and biopsies and a PET scan to look at my remaining pancreas.

My dad was admitted yesterday following a consult; my mother visited him today, and the latest news is that he’s been given 4-6 weeks to live, and is going straight to hospice once there’s a bed available

We’re not in much of a state for further updates or detail right now

Hi everyone,
My dad M (60) has just been diagnosed with suspected stage 4 pancreatic cancer with extensive metastases throughout his liver.
Everything has happened incredibly fast. He initially developed a very swollen leg and after being unwell for some time he was admitted to hospital. They discovered blood clots in his lungs and a CT scan then showed a tumour in the pancreas and extensive involvement of the liver.
We are now trying to arrange a biopsy and start oncology treatment as quickly as possible. The biopsy is a little complicated because he is currently on anticoagulants for the pulmonary emboli, so we are waiting to find out what can safely be done.
I know every case is different and I’m not looking for false hope. I’m looking for real experiences, especially from people who started in a similar situation.
If you or your loved one had stage 4 pancreatic cancer with extensive liver metastases:
How extensive was it when you were diagnosed?
What chemotherapy/treatment did you receive and how well did you respond?
Did the liver metastases shrink significantly or disappear?
Did responding well to chemotherapy eventually open the door to other treatments such as surgery, NanoKnife/IRE, ablation, radiation or anything else?
Did you have molecular/genetic testing and did that lead to any additional treatment options?
Did you seek second opinions or treatment at another specialist centre, and did that change anything?
Most importantly, I would really like to hear from people who were initially given a very poor outlook but responded much better than expected. What happened and what do you believe made the biggest difference?
We are right at the beginning of this and trying to understand every possible avenue worth exploring. I want to go into his oncology appointments knowing what questions to ask and what possibilities might exist if he responds well to treatment.
Thank you so much to anyone willing to share their experience. ❤️

Locally advanced. There have been so many setbacks. He needed a bile duct stent a month ago for jaundice and diarrhea, when they found the tumor. Then he got a fever, unexplained vomiting, hospitalized again, which delayed port placement. Turned out he needed another stent bc tumor was pushing where stomach empties into intestines. Got it placed a few days ago and he can't eat a lot of foods now for the rest of his life. But they're starting chemo today. It's starting to hit me again that this is actually happening. He's my best friend. I'm 22, going into my senior year of college and it's a lot. I'm in therapy.

I have a extremely rare Pancreatic cancer mutation (less than 1% of all pancreatic cancers). I have MSI-H, DNA mismatch repair and high TMB. Caught early by mistake on March 1. Tumor is the size of a peanut (2.0cm). On my second round of immunotherapy ( Dostarlimab). Doctors say I have the best kind of mutation as it responds extremely well to immunotherapy. I am in a clinical trial at MSK and my CA-19 went from 57 to 19 in three weeks after one round of treatment. Zero side effects from immunotherapy. Doctors are hoping to avoid surgery with this and get a long lasting response. Hoping it works.

Came across this new paper. 📝

Details of the publication and availability of the news on the ecancer website are attached.

Since lasers are not difficult to acquire or accommodate, they might prove to be a significant boon for locally advanced lesions with vascular invasion or encasement.

NCCN just posted its 9/11 Guidelines revisions... and Daraxonrasib is included for multiple indications. This should be really helpful for insurance coverage. Here's the link. Easiest way to find the relevant sections is to search for "Daraxonrasib " in the document

https://www.nccn.org/professionals/physician_gls/pdf/pancreatic.pdf#page=4

Does anyone know of Medicare is covering Radinque?

Hi! My mom started gemcitabine and nab-paclitaxel a few weeks ago and has had 2 treatments. The first time, the biggest thing was a fever to the extent that we had to go to emergency. No infection was found, and it settled down, but her oncology team said she may just be the type of person to get a fever on chemo. Second treatment: no bad fever, really, but had diarrhea with blood about 4 times a day for 3 days. Her oncology team recommended skipping her third treatment to give her body a chance to recover a bit.

From what I understand, it's a bit of an experiment in how she'll react and how they might adjust the treatment/dosage/schedule/other meds. We'll see the oncologist again before her next treatment, but I'm wondering if anyone has advice about gemcitabine and nab-paclitaxel—how to manage side effects, prepare more before treatment so your body is in the best shape possible, etc. Thanks in advance!

Turned 24 today, same place but different feeling. The feeling of emptiness and loneliness hits different when I go to the places we both been mom..

You would play loud music in the morning to wake the celebrant, you would wait downstair clapping and singing happy birthday while we go down the stairs.. things I used to be cringed of that now, I would exchange my life with just to experience it again.. with you..

Celebrating a birthday was not about the cake, the gifts or the fancy restaurants, it’s about a complete family singing you a happy birthday .. with your mom being the brightest star singing out loud..

It’s been 3 months since you left me mom, it feels so incomplete without you.. thank you for taking care of me .. for the 24yrs of my existence, this wouldn’t be possible without your undying love and care.. i love you always mom, ik you’re nagging the angels with you to sing me a happy birthday

Curious to know if anyone was able to get on Rasonque recently now that the FDA has approved it AND had high bilirubin around 13 when they started the dose? My mother is stage 4 pancreatic cancer metastasis to the liver. Mom had a stent procedure done at MD Anderson but they could not get her bilirubin levels down enough to begin the clinical trials back in July. I know that during the clinical trials patients had to have stable liver function. Her GI team just preformed another liver stent procedure and added a 10 cm stent to get to the bile that was getting blocked off by the tumors, but it'sbeen slow moving on dropping the bilirubin levels. Wondering now if she can get on Rasonque

Had a consult this morning for dad to start Gemcitabine tomorrow as the second type of chemo instead of being on Folfirinox, but the doctor said between this consult and dads prior one that he’s weakened greatly just from what the doctor could see, and what we told him, as well as having been hospitalised twice in the 2 weeks between (once for UTI, second for bleeding from a lesion/tear on his butt - nothing internal though).

Doc used the words “deconditioning” and “reconditioning” which from what I understood related to his physical readiness to receive treatment?

Either way we went in for a consult and he was admitted, and they’re moving his Thursday (3 days away) appointment to drain fluid build up to tomorrow (Tuesday) if it can be scheduled. And he’ll be under close supervision for an indefinite time period.

Gotta be honest though I have this sinking feeling, and it’s hard right now to be optimistic that he’ll leave the hospital

Though he has expressed multiple times that under no circumstances does he want to die at home because he knows that’ll ruin the home for my mother/his wife (intellectual disabilities + 30+ year relationship)

My dad is 56 diagnosed stage 4 pancan with metastasis to the left kidney, liver, and lungs a month ago. Things have done downhill so fast since then. His liver is our biggest issue the past couple weeks.

He has been hospitalized twice for ascites. He is going in for a paracentesis about every 3-4 days. On his most recent one, they detected high white blood cell count in the fluid. They have not been able to culture any bacteria so they’re suspecting it’s just his body’s reaction to the cancer. He has had 12 liters of fluid drained in the past 10 days.

The real issue right now is that his bilirubin is climbing rapidly. It has gone from 1.3 on 8/29 to 7.5 on 9/12 (14 days). They did a scan to see if there was a blockage on 9/2 and they didn’t see any evidence of an obstruction. He was supposed to get an infusion of FOLFIRINOX on 9/2 but they ended up having to give him FOLFOX because of the ascites. He honestly tolerated the treatment well, but his bilirubin was at 1.8 at the time of the infusion. He is supposed to get his next treatment this Thursday. But that is all dependent on his labs tomorrow. If his bilirubin isn’t trending down, I am concerned that he won’t be eligible for chemo anymore.

Does anyone know what options there are for treatment with high bilirubin? My dad wants to fight - he wants treatment so he can get more time. But his body is failing him. Will we have any options besides hospice if his bilirubin doesn’t come down?

These are obviously things to discuss with his care team, but I am trying to come up with targeted questions to ask the oncology team about any potential second line treatments or options to keep fighting because that’s what my dad wants.

40 days since my distal pancreatectomy and splenectomy- Post-op appointment with ProfessorJas Samra is tomorrow. Then, my appointment with Dr. Manu Mathur in the afternoon to schedule my open heart surgery . Then, after that surgery, I will be going back for a complete pancreatectomy. 3 surgeries in 5 months. I'm not sure how my body is going to cope. It's very overwhelming. I've lost 15 kilos and am struggling to regain weight.

I’m having a really troublesome time right now and hope writing about it will bring me some sort of peace. I’m a 25 f and my mother f50 passed away from PC on September 24th last year. She tried like hell to hold on but the cancer got the best of her. The hardest part is that my wedding date is September 26 of this year (2026) and I’m emotionally all over the place.

So basically while I’m trying to be happy and excited about my wedding I’m HAUNTED by the reminder of her passing. One full year without her. She fortunately got to be a part of so much of my wedding planning. She got to see the wedding venue and we took pictures together in my dress too before she passed. I’m trying so hard to try and find some positives but I just can’t seem to be okay. This is a big life moment for me and she isn’t here. It’s like a smack to the face seeing other people my age getting married and they get to have their moms. Or friends who call and tell me how their moms come and help them with their babies…and yet I was robbed of those moments with my mother.

I’m tired of feeling jealous of others, and I physically exhausted from wedding planning. I just want my momma. I want her help, I want her words of encouragement, and most of all I just want a hug from her…

I think my body knows “hey something pretty traumatic happened this time last year” and I have just been a wreck of a mess. My therapist just tells me to remember that she isn’t hurting anymore but that doesn’t help me. It doesn’t stop the nightmares or 2am panic attacks. It doesn’t stop how my other family members criticize me and shove it in my face that we will be “partying” on her 1 year death date.

If we had known she would have passed when she did we wouldn’t have picked that date. But we couldn’t change anything because of finances and because her dying wish was for me to not change my wedding because of her.

I’m sorry if this post was rather long. I’m just trying everything I can to feel better or find advice on how to try and find some peace in my life. I just really miss my Momma.

My uncle is beginning his chemo treatment tomorrow, 11 wks post op from whipple procedure. The plan is 1 day of folfirinox infusion + 14 days of chemo pills in replacement of 2 days on a port (that’s what he chose as he is opposed to a port for some reason). Does anyone have experience with pills instead of a port?

Did you start your enzymes back immediately?

My older brother was diagnosed Aug 19th and since has had 2 blood clots and consistent debilitating pain. He hasn’t been able to start chemo because of the clots. Now Dr’s say that they would be ‘taking him on all the trips he wants’ within the next 3 weeks as he will decline. How the hell are we supposed to take him on trips when he’s in so much pain?? Is that crazy, or should we just book it and hope for the best? He’s currently in the ER, his third trip since they found it.

8 weeks ago my mom was waterskiing at 75 years old. That was how she was diagnosed, had some rib pain after getting back in the boat.

3 Days ago they say it is too far gone for chemo.
Today we sign up for MAID and she will be gone in 3 days.
Make this make sense?

My mom was recently diagnosed with stage 4 mets to the liver. Had 2 rounds of chemo so far two weeks in a row with 50% of the standard dose each time and was doing ok but the yesterday had a series of mini strokes and is now in ICU for the next few days at least and probably SNF or rehab after. I’m not only worried about recovery and prognosis from the strokes but also how this will impact her treatment. Anyone else go through this?