Have had 38 cycles with Abraxane & Gemczar. CA19-9 rising.

Posted by 199 @199, Aug 8 1:44pm

I have had 3 years of chemo with Abraxane & Gemczar: 75 treatments with a break of 4 months 2024. My CA19-9 seems to have plateaued and is now up to 62.5. Neuropath is increasing to feet & hands. Spent all night up with pain last night til 0630 today. Will see oncologist before next chemo. My CT was good in June & is being scheduled for Sept.
Any ideas what I should be asking. As a "retired" RN I tend to minimize symptoms like increasing neuropathy & middle & low back pain. Taking care of yourself can be more of a challenge than taking care of and advocating for others.
Thanks in advance for your input.

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3 years is a good run for abraxane. Maybe you could get into a clinical trial for RMC6236? Praying for the best for you.

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3 years is a long run on one drug. That CA-9-9 rise may be tied to other things, but I would think your system may soon get smart to Gem.

Your CT and possibly an MRI of liver will be very helpful to know what is going on. Might be a good time for CTDNA test as well. It will be a possible indicator of something flaring up before it can be seen.

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Hi
First of all, you're a role model. I've now gone through 20 cycles and 41 treatments of the Abraxane & Gemczar combo over the past 20 months. Nice to hear that you and others have gone longer.
Same situation with the neuropathy (particularly in my feet) gradually increasing.

Couple ideas for you:
1) A new immunotherapy was recently approved for bladder cancer, Anktiva. It was invented by the same guy that invented Abraxane so the credentials are there. It's now been granted Expanded Access Authorization for pancreatic cancer. But you must be in a state of lymphopenia to qualify. Just had the conversation with my doc this week. I'm not there yet. If you are, it might be worth considering.
2) Daraxonrasib (RMC-6236) - don't know much about it but apparently in a Phase 3 study. https://clinicaltrials.gov/study/NCT06625320 Has potential but still might be out a year before approvals.
By the way, are you icing hands and feet while being infused with the Abraxane?
Best wishes.

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Profile picture for gamaryanne @gamaryanne

3 years is a long run on one drug. That CA-9-9 rise may be tied to other things, but I would think your system may soon get smart to Gem.

Your CT and possibly an MRI of liver will be very helpful to know what is going on. Might be a good time for CTDNA test as well. It will be a possible indicator of something flaring up before it can be seen.

Jump to this post

Last CT in June is still "stable". No new nodules or tumors. I do have the KRAS G12D & TMP 53 mutations. Also history of arthritis in back. Middle back pain was the only symptom I could relate to when I was diagnosed. Have had what I thought was increasing mid & lower back pains due to the rainy weather here in Georgia. My oncology nurse navigator got the office to give me an appointment with the oncologist for Thursday before chemo instead of waiting until Oct. CT is being arranged for Sept. Will ask about the RMC 6236, CTDNA test & MRI of the liver. Thank you.

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Profile picture for bzabeli @bzabeli

Hi
First of all, you're a role model. I've now gone through 20 cycles and 41 treatments of the Abraxane & Gemczar combo over the past 20 months. Nice to hear that you and others have gone longer.
Same situation with the neuropathy (particularly in my feet) gradually increasing.

Couple ideas for you:
1) A new immunotherapy was recently approved for bladder cancer, Anktiva. It was invented by the same guy that invented Abraxane so the credentials are there. It's now been granted Expanded Access Authorization for pancreatic cancer. But you must be in a state of lymphopenia to qualify. Just had the conversation with my doc this week. I'm not there yet. If you are, it might be worth considering.
2) Daraxonrasib (RMC-6236) - don't know much about it but apparently in a Phase 3 study. https://clinicaltrials.gov/study/NCT06625320 Has potential but still might be out a year before approvals.
By the way, are you icing hands and feet while being infused with the Abraxane?
Best wishes.

Jump to this post

I found out about icing rather late during chemo (like over 6 months). I found acupuncture to be helpful, but now my acupuncturist says it is mainly to prevent increased neuropathy rather than prevent it. When I had a four month "break" from chemo I did find the neuropathy did decrease some 🙂
The RMC-6236 sounds tempting if I don't have to go to California 🙂
Thank you.

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Here's a study that was just sent to me and might some apply to your situation.
https://academic.oup.com/oncolo/article/30/3/oyae267/7814737

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Curious as to your mutation. I read some respond better to chemo then others.

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Profile picture for bzabeli @bzabeli

Here's a study that was just sent to me and might some apply to your situation.
https://academic.oup.com/oncolo/article/30/3/oyae267/7814737

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Where did you receive this study from? Interesting as I've had 3 lines of chemotherapy and have active peritoneal cancer and my oncologist is Dr. Seery and this study was never mentioned to me. I wonder which mutations it works on. I was referred to Dr in charge of clinical studies, but there were none for KRAS, TP53, ATM (VUS), or for my new mutation SMAD4.

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Profile picture for lili62 @lili62

Curious as to your mutation. I read some respond better to chemo then others.

Jump to this post

I do have the KRAS G12D & TMP 53 mutations. I believe the KRAS ones are more difficult.

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Profile picture for 199 @199

I do have the KRAS G12D & TMP 53 mutations. I believe the KRAS ones are more difficult.

Jump to this post

Well, there's almost nothing for TP53 and a few out there for KRAS - most notably RMC-6236.

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