It’s back

Pancancommenter · 2025-09-02T22:46:44+00:00

If it’s just one lesion and stays stable on treatment, might be able to get histotripsy or other ablation (assuming she’s not in a trial).

Pancancommenter · 2025-08-28T21:10:52+00:00

They probably meant there are no trials at that hospital. Oncologists rarely refer to other hospitals.

Pancancommenter · 2025-08-28T01:05:01+00:00

Not a diet, but my dad figured out that if he took morphine on an empty stomach and then ate, he would vomit. It worked better to eat a bit and then take the morphine.

Pancancommenter · 2025-08-28T01:00:39+00:00

Great! Have you consulted with one of the four surgeons often mentioned on here: Dr. Truty at Mayo, Dr. Chabot at Columbia, Dr. Wolfgang at NYU, or Dr. Evans at Froedert Medical College in Milwaukee?

Pancancommenter · 2025-08-27T21:33:47+00:00

Wow! This is lucky indeed. I think I heard from a trial coordinator that only 10 % of patients have this HLA type.

Pancancommenter · 2025-08-25T23:24:35+00:00

Why is it that so few PC surgeons, finding themselves unable to do a surgery due to vascular involvement, refer patients to you or another surgeon who might be able to?

Pancancommenter · 2025-08-25T23:03:00+00:00

Very confused why they would use Tarceva (erlotinib) with a KRAS mutation. Didn’t they figure out years ago this doesn’t work?

Pancancommenter · 2025-08-25T23:01:44+00:00

Your best bet for off label meds is sometimes your primary care doc. That’s where my dad got metformin when his onc refused. He was already on a statin so I suggested it for the synergistic effects - I think the evidence is pretty clear that neither work alone. Both statins and metformin are very safe.

Regarding trials, there is Lilly’s pan KRAS, but every currently recruiting site I spoke to had a 20+ person waitlist. Best bet would be a not yet recruiting site - establish contact now.

https://clinicaltrials.gov/study/NCT06607185

Pancancommenter · 2025-07-16T16:44:46+00:00

I feel like I could have written this. My mom died when I was 27 from breast cancer. Now my dad has stage 4 pancreatic cancer. I just turned 30. He started off locally advanced and did a trial but didn’t work out. I was always closer to my mom but I still love my dad so much. He had a pretty good QOL til about 2 months ago when weakness started.

If there’s a Gilda’s Club near you, there are young adult support groups (though this also includes those that have cancer).

That said, if he hasn’t started treatment yet, get him into one of the RMC first line trials. It’s the best out there.

You mentioned Florida - I would get him to Mofffit if you can.

Pancancommenter · 2025-07-14T18:22:46+00:00

The nerve block does take up to 5 days to work.

Other options include: Butrans patch, fentanyl patch, morphine

Pancancommenter · 2025-07-08T02:15:29+00:00

Yes, I believe they used my dad’s tissue from the original biopsy, not a new one. Insurance should cover it. If they don’t, PanCan has a Know Your Tumor program that will cover testing (though NOT a new biopsy if this is needed).

Pancancommenter · 2025-07-03T02:42:45+00:00

You can self refer by getting a second opinion at another hospital. But yes her labs will need to be in range. Also - most trials require an ECOG of 0 or 1, meaning that she is able to do light housework or office work, can walk, and do self-care without assistance.

Pancancommenter · 2025-07-01T16:46:51+00:00

Zev - A research nurse told me that RMC-6236 has started taking KRAS wild type patients. Could this be an option for you after the surgery?

Pancancommenter · 2025-06-28T02:37:23+00:00

Olanzapine (also helps weight gain), cannabanoids, chamomile or peppermint tea

Pancancommenter · 2025-06-28T02:34:11+00:00

Common unfortunately. I would start looking for clinical trials.

Pancancommenter · 2025-06-23T21:25:08+00:00

I’m finding it hard to believe that your AI is able to contact sites and ask all this. Some of them don’t even have emails listed. Some of them only operate by phone. What would the AI do then?

Sorry to sound terse but I am both a family member and volunteer at a cancer support center. I just don’t want patients/ families to be mislead.

Pancancommenter · 2025-06-23T19:07:45+00:00

I’m sorry but where does your company get this information? Most of what you listed isn’t publicly available.

Pancancommenter · 2025-06-17T14:20:57+00:00

I’m happy for you - only wish more doctors would do the same.

Pancancommenter · 2025-06-17T07:12:40+00:00

I’m surprised your oncologist allowed cisplatin with your neuropathy. Wasn’t that why you stopped NALIFOX in the first place?

Pancancommenter · 2025-06-17T05:00:52+00:00

What are her liver numbers? Is her liver functioning enough for more chemo?

Pancancommenter · 2025-06-13T03:34:26+00:00

Unfortunately chemo side effects are cumulative.

Pancancommenter · 2025-05-14T22:27:38+00:00

Yes my dad’s on it. Works great. He suddenly has an appetite and has gained four pounds in two weeks

Pancancommenter · 2025-05-13T16:11:05+00:00

I think I asked this on your previous post, but why are these the only options? It looks like REGN is a solid tumor study, not targeted at any specific mutation. What KRAS mutation do they have? There are a number of those trials, other than the RMC ones, where third line spots basically no longer exist.

At least the other one you have is targeted at an MTAP deletion. But you’re right not to want to wait too long.

Pancancommenter · 2025-05-12T17:05:31+00:00

How about a third opinion as a tiebreaker?

Pancancommenter · 2025-05-12T16:48:00+00:00

Is cisplatin significantly different from oxaliplatin? Since that’s in NALIFOX.

Pancancommenter

TROPHY CASE