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Questions about maintenance chemotherapy

Posted by ncteacher @ncteacher, Aug 17, 2023

After 6 rounds of chemo and my gallbladder surgery, my pancan stats are looking good--so of course, now I have more questions! As a reminder, I'm stage 4 adenocarcinoma in the body of the pancreas, inoperable due to blood vessel involvement. I have the ATM genetic mutation.

I've been off chemo since 7/5/23 due to a gallbladder attack and laparoscopic removal. CA 19-9 has dropped from 1736 in March to 271 per blood test on 7/24, and a CT scan taken 7/25 when I was admitted to the hospital shows that my main tumor is stable when compared with scans taken in March and June. At my appointment today, my oncologist said he wants to do two more rounds of modified Folfirinox, then get new CT scans and CA 19-9 results. Depending on those results, he said I might be a candidate for maintenance therapy.

He said there are two main approaches. One is Folfiri (no oxaliplatin) at a lower dose; I don't know the frequency or dosage. The other would be using olaparib (Lynparza), an oral chemo agent (PARP inhibitor) that is FDA-approved for BRCA-related cancers. He said he wasn't happy with the way the olaparib clinical trial was constructed; he also said the drug is extremely expensive and not specifically approved for ATM-related cancer.

While we wait for my new data, I need to research these two possibilities. Can anyone out there talk about your experience with maintenance therapy? Which one did you use, results, side effects, how long did your tumor remain stable, etc.? Is olaparib covered by insurance for ATM-linked cancers? Thanks in advance for any info you can provide.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

katiegrace | @katiegrace | Oct 22, 2023

Hi,
I am responding to your private message you sent to me, after I shared my ca19 was 35.
This is my first private message. I hope I am doing it right.
I too have had 6 rounds of chemo - fulfirnox.
I was diagnosed june 8th 2023,with stage 2b.
A 2.5-3cm tumor on the head and spread to one lymph node by liver.
I had a CT and pet after 4 chemos-at that time they said tumor was stable. In June they said their goal for me was a cure - 12 chemo treatments, 1 month rest, the Whipple, 3 months surgery recuperation.
Recently I had problems w my gallbladder. The gallbladder duct was blocked w sludge. They did an ercp- the duct is still blocked but they made a new pathway from gallbladder to small intestine and included a stent in the new pathway. I had to skip chemo for 3 weeks. Tomorrow I have followup for the ercp.
I will have another CT and pet on Nov 12 -13, after my 8th chemo.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2023
In reply to @katiegrace "Hi, I am responding to your private message you sent to me, after I shared my..." + (show)
@katiegrace

Hi,
I am responding to your private message you sent to me, after I shared my ca19 was 35.
This is my first private message. I hope I am doing it right.
I too have had 6 rounds of chemo - fulfirnox.
I was diagnosed june 8th 2023,with stage 2b.
A 2.5-3cm tumor on the head and spread to one lymph node by liver.
I had a CT and pet after 4 chemos-at that time they said tumor was stable. In June they said their goal for me was a cure - 12 chemo treatments, 1 month rest, the Whipple, 3 months surgery recuperation.
Recently I had problems w my gallbladder. The gallbladder duct was blocked w sludge. They did an ercp- the duct is still blocked but they made a new pathway from gallbladder to small intestine and included a stent in the new pathway. I had to skip chemo for 3 weeks. Tomorrow I have followup for the ercp.
I will have another CT and pet on Nov 12 -13, after my 8th chemo.

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@katiegrace, you can find instructions on how to send a private message in the Help Center https://connect.mayoclinic.org/help-center/

How are you doing? What did you learn at the follow-up after the endoscopic retrograde cholangiopancreatography (ERCP) ?

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1 reply
katiegrace | @katiegrace | Oct 31, 2023
In reply to @colleenyoung "@katiegrace, you can find instructions on how to send a private message in the Help Center..." + (show)
@colleenyoung

@katiegrace, you can find instructions on how to send a private message in the Help Center https://connect.mayoclinic.org/help-center/

How are you doing? What did you learn at the follow-up after the endoscopic retrograde cholangiopancreatography (ERCP) ?

Jump to this post

At my follow up for the ercp, everything checked out fine.
Bloodwork looked good. Overall I have been feeling better since the ERCP.

I had chemo last Thursday and have not been feeling well. I've had jaw pain from the oxaliplaten. In the beginning of my chemo treatment I had jaw pain from the oxaliplaten, so they lowered my dose down to 50%. The jaw pain went away, but now it is back. So I will ask my Dr if we can lower the dose again.

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jk77 | @jk77 | Nov 7, 2023
In reply to @stageivsurvivor "I have the (g)BRCA2 mutation and was the first patient accepted into the RucaPANC clinical trial..." + (show)
@stageivsurvivor

I have the (g)BRCA2 mutation and was the first patient accepted into the RucaPANC clinical trial conducted at the Abramson Cancer Center of the Hospital of the University of Pennsylvania from 2014-2016. That clinical trial was open to BRCA1, BRCA2 and PALB2 germline and somatic mutations. I did 24 cycles of Folfirinox for metastatic pancreatic cancer to the liver to get maximum benefit out of it before doing maintenance monotherapy using the biosimilar drug to Olaparib (Lynparza) called Rucaparib (brand name Rubraca).

I have been on the PARP almost nine years. I had full dose until exactly six years on it when I began to feel the effects of anemia and did one dosage reduction. Rubraca was approved for ovarian, breast and prostate. The original developer Clovis Oncology did not apply for FDA approval. AstraZeneca with Lynparza beat them to a very small market and Clovis had limited financial resources that they were using to get approval for treating breast cancer. Clovis filed for bankruptcy December 2022 and the Rubraca asset was purchased by Pharma and Schweiz with offices in Austria and Switzerland. The drug is manufactured in Switzerland as it is prescribed for the FDA approved uses. Those that participated in clinical trials for pancreatic cancer are using it under compassionate use and obtain it at no cost.

The expert at Abramson Cancer Institute with PARP inhibitors is Dr. Kim Reiss-Binder. She has conducted trials of both Rubraca and Lynparza. She is the PI of the Apollo trial EA2192 that does not include ATM mutations.

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@stageivsurvivor : Apologies for not quite understanding, but do you attribute your "I'm cured" status to your 46 cycles of Folfirinox, to this clinical-trial drug, or to the combo?

I'm asking bc I'm not yet at the point of looking for a clinical trial, but I'm worried that I wouldn't be able to participate in one if I wanted to (I'm broke and I'd be unable to pay for travel to, and lodging near, a clinical-trial site). I'm hoping that lots and lots of IV chemo will bring me to remission.

Thank you for the enormous amount of info and expertise that you share with us; best wishes.

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