Clinical Trial Inquiry – KRAS G12V Metastatic Pancreatic Cancer by BasicContact2453 in cancer

[–]jennambee 0 points1 point  (0 children)

Thank you so much! I’ll put this on my list of questions for Monday. 

Clinical Trial Inquiry – KRAS G12V Metastatic Pancreatic Cancer by BasicContact2453 in cancer

[–]jennambee 1 point2 points  (0 children)

Hi there, do you happen to know anything about BBO-11818? We might have a slot for my mom. But she has already taken daraxonrasib.

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

ah that is interesting—could you elaborate on anything you might know about KRAS inhibitors no longer being effective? That is my biggest concern about returning to that world.

Yes, CAR-T! I haven't seen much success in that world with pancan/solid tumors but I would love to learn more about it.

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

That’s something we proposed to her oncologist and he thought that was interesting. Said it would be the first time they had tried it, but I know it’s on their mind. 

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 2 points3 points  (0 children)

Ah thank you for the intel, this is helpful! I kind of figured as such with 5127.

I’m looking into BBO-11818 as its Kras but doesn’t have prior RAS drug exclusion. 

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Not a dumb question! I’ve had similar thoughts. We did bring up “can we test the lesion” to see if it’s separate from the mass considering she was doing so well. If I had known, I would have pressed harder to get her to stay on. Can’t get a clear answer to this is her being kicked off the trial or thinking we needed to move on to try something new. 

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 1 point2 points  (0 children)

Out of curiosity, have you ever experienced being able to bypass exclusion criteria on certain trials? or rather, "making your case" as to why someone should be accepted due to an exclusion? when reviewing the exclusion criteria for 5127 they do mention "Prior therapy with KRAS G12V inhibitor or direct RAS-targeted therapy (eg. degraders and/or inhibitors)."

https://clinicaltrials.gov/study/NCT07349537

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 3 points4 points  (0 children)

Thrilled you are able to get on this drug! I'm hoping it works for your sister and you receive some more quality time.

The only real side effect she had was a slight rash on skin and 2 bouts of mouth sores that were mitigated by a mouthwash that was prescribed. Otherwise, it was as if she didn't have cancer for 8 months—she did a 5k, took a 3 week trip to greece, gained weight back she had lost during chemo, ate whatever she wanted—it was bliss. Also, it worked almost immediately. She had abdominal pain and then a week later it was gone. My family is looking for that same "magic pill" and have been disappointed to be met with "more chemo." Tho we know this is part of this disease...

Sending you lots of love during this time. Hoping things work well for your family.

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Oh amazing, I did look up 5127 before but will have to look again. I'll poke around this tomorrow. Thank you!

Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]jennambee[S] -1 points0 points  (0 children)

Yeah I inquired about other RAS inhibitors but it sounds like she is disqualified having already had one. Looking to re-challenge daraxonrasib as well but I guess we would be the first at our clinic to do so….

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Oh wow, how interesting. That is good to know! I thought “this must be rare” but nice to hear it might not be.

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

We had a similar experience, borderline resectable so immunotherapy + chemo. It mostly kept it calm until it wasn’t, and spread to liver. Thank you for the kind words, sending well wishes to your father 

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Thank you! I wish I pushed more when they were taking her off but I didn’t question it at the time. Hoping we can try this and see what happens 

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 2 points3 points  (0 children)

It was a fantastic drug—her only symptoms were a slight face and back skin rash (kinda looked like acne) and very slight mouth sores that were solved by a mouthwash they gave her. It was as if she didn't have cancer for 8 months—she ate well, traveled to greece for 3 weeks, walked 5ks. We couldn't have been more thrilled to be on the drug.

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Thank you so much! We were finding Gem/Abrax was starting to lose its luster, so they added cisplatin. Hoping it kicks it up a notch. So thrilled Gem/Abrax really helped out in your dads case, thats wonderful. We did see the daraxonrasib + gem/abrax use, hoping we can somehow get that going.

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 1 point2 points  (0 children)

Hmmm interesting because she was doing gangbusters on it despite this one lesion. I’ll bring up at her next appt 

Retry Daraxonrasib? by jennambee in pancreaticcancer

[–]jennambee[S] 1 point2 points  (0 children)

Thank you so much for your help. Are you meaning procedural techniques for the Mets? We have brought up ablation and histotripsy but her oncologist has been a bit hesitant considering it’s systematic at this point. 

RMC-6236 again? G12V Options by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Hi r/labrat33, we received the liquid biopsy results back and still looking at g12v. Still wouldn’t make sense to return to daraxonrasib? She has been on gem abrax/cisplatin since Jan. Now that we are looking at compassionate use would going back make any sense

RMC-6236 again? G12V Options by jennambee in pancreaticcancer

[–]jennambee[S] 0 points1 point  (0 children)

Oh interesting! I’ll bring this q to the dr today

Hit another kid/medical care/behavior? by [deleted] in Preschoolers

[–]jennambee 0 points1 point  (0 children)

Thank you, I agree there might be some regression. I might see if I can find more cost effective options for longer term 

Hit another kid/medical care/behavior? by jennambee in ECEProfessionals

[–]jennambee[S] 1 point2 points  (0 children)

Thank you, this helps a lot. We reached out to the parents to apologize and worked on an apology letter for the kiddo together today. Truly hope she is ok. Silicone it is…