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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Profile picture for lili62 @lili62

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

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My mutation is an ATM. And according to my doctor, Robert McWilliams at Mayo Rochester, it responds very well to chemo compared to other pancreatic cancers.

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Profile picture for marienewland @mnewland99

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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I found it on-line. A friend had pointed my in the direction of Anktiva and ImmunityBio.

The founder and developer is Dr. Patrick Soon-Schiong. He was a pancreatic surgeon early in his career. Later he developed Abraxane which many of us are familiar with. So he's no fly-by-night.

He's given some recent interviews and so you can find them on Youtube.

My medical team was also unaware of this until last week.

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Profile picture for bzabeli @bzabeli

I found it on-line. A friend had pointed my in the direction of Anktiva and ImmunityBio.

The founder and developer is Dr. Patrick Soon-Schiong. He was a pancreatic surgeon early in his career. Later he developed Abraxane which many of us are familiar with. So he's no fly-by-night.

He's given some recent interviews and so you can find them on Youtube.

My medical team was also unaware of this until last week.

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Thank you, I'm going to send the link to Dr. Seery and get some feedback from her.

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I can’t send the link, but check Nature or NBC new medical tab for study released on 11th. Promising phase 1 trial for vaccine targeting KRAS H12D. Implemented on patients who had surgery. It’s an ELI trial.

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Profile picture for gamaryanne @gamaryanne

I can’t send the link, but check Nature or NBC new medical tab for study released on 11th. Promising phase 1 trial for vaccine targeting KRAS H12D. Implemented on patients who had surgery. It’s an ELI trial.

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Yes, ELI is behind the vaccine and I'm looking at those trials. I'm assuming you have a typo with KRAS H12D? Intended is G? I sent the link posted to my dr who is one of the authors of the article to get her feedback. I'm not sure what lymphopenia is or if I qualify,

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Yes, typo. I have KRAS G-2D , TP53. After 4 years thought it was time for new look at mutations. They did a biopsy and unfortunately not enough sample sent for results. I am going to ask for Guardant test again(first time I asked for it was refused). I am glad you did this. After time and chemo, I do believe other mutations occur.

ALL-i will attend the Seema Magowitz conference in Milwaukee this weekend for patients and physicians. many leading professionals in this area will be there. If you have a question you would like asked, pls send my way. It’s an awesome two and a half days with people all over that live and breathe this disease. 💜💜

If you live near there you should come!

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Profile picture for gamaryanne @gamaryanne

Yes, typo. I have KRAS G-2D , TP53. After 4 years thought it was time for new look at mutations. They did a biopsy and unfortunately not enough sample sent for results. I am going to ask for Guardant test again(first time I asked for it was refused). I am glad you did this. After time and chemo, I do believe other mutations occur.

ALL-i will attend the Seema Magowitz conference in Milwaukee this weekend for patients and physicians. many leading professionals in this area will be there. If you have a question you would like asked, pls send my way. It’s an awesome two and a half days with people all over that live and breathe this disease. 💜💜

If you live near there you should come!

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Bless your heart for all the back and forth flying you do! I'm scared to even get on a plane now for almost 20 years.
My questions would be about the ELI vaccine - is it legit for pancreatic cancer patients abd also if possible to do early release for RMC6236 if the phase 3 results so far are overwhelmingly looking real good now?
Thank you gamaryanne for all you do!

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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.

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I spoke with Dr. Seery yesterday about the trial requiring lymphopenia. The only result they were looking for was if the trial increased the lymphocytes- that's the only positive results they were receiving.

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Profile picture for marienewland @mnewland99

Bless your heart for all the back and forth flying you do! I'm scared to even get on a plane now for almost 20 years.
My questions would be about the ELI vaccine - is it legit for pancreatic cancer patients abd also if possible to do early release for RMC6236 if the phase 3 results so far are overwhelmingly looking real good now?
Thank you gamaryanne for all you do!

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My oncologist was saying it's up to the FDA to decide if they want to do an early release of RMC6236. Also, apparently they held a conference recently with all pancreatic oncologists to talk about their drug. Positive results seem to be in order, though they haven't released which areas of the body are seeing the good refunds. Hopefully, Revolution Medicines is receiving offers from big pharmaceuticals. So if it's up to FDA to do an early release of 6236 then we must lobby them via PanCan.org.theres nothing out there yet by PanCan.org, but it's an idea from a desperate audience.

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Profile picture for marienewland @mnewland99

I spoke with Dr. Seery yesterday about the trial requiring lymphopenia. The only result they were looking for was if the trial increased the lymphocytes- that's the only positive results they were receiving.

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Yes, that's the point of the medication. And then increased lymphocytes help kill the cancer cells.
Here are some other links.
https://clinicaltrials.gov/study/NCT06956547
https://immunitybio.com/lymphopenia/
https://immunitybio.com/expanded-access/
The expanded access makes it particularly interesting. But needs your doctor's support.

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