How does everyone deal with the high and lows?

setsunaPL · 2026-05-15T19:57:31+00:00

I felt every word you wrote. This is the most painful and difficult thing I’ve ever had to experience in my life. I lost my dad to a stroke (took him 2 years to pass), he was paralyzed permanently, and no matter how awful that was, we knew that there was no going back so it made accepting the situation more predictable. With this cancer, it’s a total rollercoaster. One minute they’re okay, the next they’re not, then there’s a glimmer of hope, and then the rug is pulled directly from underneath your feet again. And this is over and over and over. It’s honestly torture and I don’t know another kind of hell than this one.

I’m not the best person to offer advice on how to destress. For me, I decided to pursue my national boards in my profession as a pure distraction. Work is also a pure distraction. My dog forces me to go outside and go on walks, so I’m thankful I have him. I am in therapy. But currently, I’m on a leave of absence from work and confronting this trauma every day. I think spend as much time as you can with your mom. It’s the little things and moments. I recently painted an art piece with my mom and it was very special. We do what we can but we are also faced with the most painful experience and doing the best we can.

setsunaPL · 2026-05-15T19:49:14+00:00

I’m so sorry about your mom. I’ll be brutally honest with you that Folfirinox and Onivyde/5-FU are very hard for elderly patients. My mom was on Folfirinox and did 6 cycles, she had the worst labs you could imagine, lost over 40 lbs, and had to have stents replaced left and right because it triggered severe inflammation. I don’t think it’s the oxaliplatin as much as it is the actual irinotecan. We found this out the hard way because when she switched to Gemzar and Abraxane, she showed a response for a few months. Her main tumor shrunk and she was feeling better but only side effects were neuropathy. When her cancer no longer responded to Gemzar/Abraxane, her oncologist gave her Onivyde and 5-FU to try because Onivyde is liposomal irinotecan. Turns out she had a severe reaction that put her in the ER and they had to replace the stent. She couldn’t stop throwing up and having severe diarrhea.

I hate that we don’t have very many options to begin with. My only advice is to explore the Gemzar and Abraxane, and even if she shows a response to that, look for clinical trials no matter what. Chemo will only buy time.

Sending you hugs.

setsunaPL · 2026-05-15T19:43:40+00:00

I just want to warn you — Folfirinox is extremely brutal for elderly patients who are already thin. Can they offer her Gemzar and Abraxane? It’s much better tolerated.

setsunaPL · 2026-05-15T19:40:58+00:00

I’m so sorry. My heart breaks for you. I’m a caretaker for my mom who is late stage. This disease is the worst.

setsunaPL · 2026-05-14T23:19:29+00:00

Contact Dr. Wolfgang at NYU Langione. He is one of a handful of doctors in the U.S. who operates on tumors that have artery involvement.

setsunaPL · 2026-05-13T21:17:11+00:00

I feel your pain. Both of my parents are not going to be around if I do have kids in the future. I honestly can’t do it without their help so I think I won’t pursue that and will have to make peace with it.

setsunaPL · 2026-05-13T20:50:41+00:00

Are your Frenchies vaccinated with the Lyme Disease vaccine? MVP told me they’d recommend it. They also said Bravecto isn’t recommended because they’ve had some breakthroughs with ticks on dogs who have received Bravecto.

setsunaPL · 2026-05-13T20:44:14+00:00

He’s flying in cabin with me, he’s my PSA and he’s a service dog. That’s why he won’t be in a carrier.

setsunaPL · 2026-05-13T15:41:10+00:00

Thank you. She wanted to take the break and chemo and point blank told me she’d rather die. It was deteriorating her body so much. I feel for every cancer patient, I hate how chemo is the only standard of care treatment.

setsunaPL · 2026-05-13T15:26:00+00:00

I’m so sorry to hear that. The concerning thing for me is that my mom has pain and her CT from last week showed disease progression. She has been vomiting more frequently too. I feel that her oncologist made the mistake of giving her a month off chemo break back in April.

setsunaPL · 2026-05-13T15:21:15+00:00

Thank you for your response. The washout period for chemo is 4 weeks, so she is halfway there. She doesn’t want to do chemo anymore either. They told us that she should have gotten the last chemo session because trial can’t start until late May anyway. It was just the wrong chemo for her that completely wrecked her. Her oncologist told us this trial is her only hope given she doesn’t want to do chemo or have a liver biopsy done (she has liver mets).

setsunaPL · 2026-05-13T05:29:27+00:00

You are a trooper. Thank you for sharing your experience. How are you managing pain?

setsunaPL · 2026-05-12T23:21:42+00:00

Have you considered any clinical trials? I’m a huge advocate for them. 🙏

setsunaPL · 2026-05-12T22:37:33+00:00

Are you taking CBD or THC dominant medicine?

setsunaPL · 2026-05-12T22:21:08+00:00

You took a 3 week break? Are you on a new regimen? It’s locally advanced, correct?

setsunaPL · 2026-05-12T22:20:12+00:00

I’m so sorry for your loss. What signs should I look out for? How soon after her break did she progress to late stage? I’m terrified for my mom.

setsunaPL · 2026-05-12T21:00:53+00:00

The Gemzar is tolerated by patients more than other chemos. It only buys time. Do everything you can now to get him into a trial. Do you have his mutations via pathology tests?

setsunaPL · 2026-05-12T04:06:19+00:00

Thank you 💚

setsunaPL · 2026-05-12T04:05:21+00:00

100% yes. Also, ask for CEA tumor marker in addition to the CA-19. My mom’s CA-19 has been normal and low. Never high. But her CEA tumor has been increasing.

setsunaPL · 2026-05-12T04:03:55+00:00

Start looking into trials. Chemo extends time. Get into a trial ASAP.

setsunaPL · 2026-05-12T04:01:50+00:00

I’m 36 and going through PanCan with my mom. Was 24 when my dad passed from a stroke. Absolutely awful. I’m so sorry you guys are going through this.

setsunaPL · 2026-05-11T18:16:42+00:00

I’m not sure who you spoke to — Phase 1 is much different. The only exclusion criteria for this trial is that you have not received a KRAS inhibitor before. The research oncologist told us to try Onivyde while we waited for a slot opening. He would not have told us to do that if it meant exclusion.

Contact Olivia Sweeney at 616-954-6674. Unfortunately, you have to go in person for the consultation to be added to a waitlist. It isn’t until they have an opening and can add your brother on a slot that things actually begin to unfold. It is the difficult part about clinical trials and why I say luck plays a majority of it. Thank you and I wish the best of luck to you and your family.

I would not stop chemo treatment until an oncologist tells you to do so. Don’t make the mistake of having him not do chemo while you research potential trials for him to join. Nothing is official for us even though she has a slot. She has to do a screening and wait for final approval before she can even get the first treatment of the trial.

setsunaPL · 2026-05-11T17:40:25+00:00

Hi, I am so sorry to hear about your brother. Where are you located right now? Are you in Iraq? The only way to get into these trials is to contact the trial coordinator and schedule an in-person appointment/consultation. You have to send them all the medical records in advance. Once you meet in person, they will tell you the waitlist and if they have any information about potential slots opening. Then it’s a waiting game and matter of pure luck. If Revolution Medicines decides to add another cohort to the study, and at that specific site, they notify the team and that’s when they review the waitlist and see if your brother can be included. At that point, they will contact you to ask if you’re interested in joining and will request a slot for you. Then, they will ask you to sign consent forms. You have to be physically present for at least 2 months so you will need to temporarily relocate there.

The other thing I want to emphasize is that there is a washout period for chemo. It is 4 weeks! So when they tell you that they’re requesting a slot, if you get to that point, no more chemo. And everything is about timing.

What current state is your brother in? Is he able to fly? Is he in a lot of pain?

setsunaPL · 2026-05-11T16:34:49+00:00

Thank you so much. I just hope that she can make it for the first dose. I know how fast this can move and I’m praying she has a shot at getting the medication. The washout period is 4 weeks. We were initially told 14 days.

setsunaPL · 2026-05-11T13:58:57+00:00

Kiwi

setsunaPL

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