Treatment options after 12 rounds of chemo

Posted by jbnc23 @jbnc23, Jun 26 10:42am

My husband was diagnosed with stage 3 pancreatic cancer in December 2023. Today he is getting his 10th round of chemotherapy: 5FU/irinotecan/oxaliplatin. The irinotecan has had dose reductions a couple of times due to ill effects post-treatment. Because of vein involvement, he is not a candidate for surgery.

My question is: what happens after his 12th round of chemo assuming his scans are good? To date, he has not had tumor shrinkage, but he has also not had tumor growth. Our primary oncologist said he would not be able to continue on the same chemotherapy regimen but would likely switch to oral chemo. Our second opinion oncologist proposed radiation after the 12th round to give his body a “chemo break”. To complicate matters further, my husband also needs another aortic valve replacement, which has been put on hold due to the pancreatic cancer.

Nothing is decided yet, but I’m curious what others have done and how it worked out for you. Thank you.

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sheridanb | @sheridanb | Jun 26 3:33pm

My husband finished the same 12 rounds about 6 weeks ago. Oncologist currently has him just on the 5FU in a pump.... eliminated the other two. His is stage 4. Scans show not much shrinkage, but also no progression which is good. So far just the 5FU is easier for him. I won't say easy as he was so weak from the terrible 12. But I see some slight improvement in energy, alertness, etc. Blood test results are improving. But oncologist has said if he has two ca19-9 tests in a row with numbers going up that he will look at different chemo drugs to try.

markymarkfl | @markymarkfl | Jun 27 12:38am

@jbnc23 , I don't think there's any magic limit requiring your husband to stop at 12 treatments. Although the drugs he's on are tough on kidneys, blood, bone marrow, peripheral nerves, mind/spirits and more, the fact that he's at a point of somewhat "stable disease" is a good sign. Forum member @stageivsurvivor went far beyond the standard 12 rounds of the above drugs with minor adjustments he can tell you about.

Doctors may be able to adjust or change the "standard of care" drugs your husband is on, possibly skipping the oxaliplatin intermittently or replacing it with the slightly milder cisplatin. Other options such as GAC (Gemcitabine + Abraxane + Cisplatin) __may__provide a better response and/or fewer side effects. I had a so-so response to 12 rounds of Folfirinox before my surgery. After my post-op recurrence, I went through 32 rounds of GAC with better tolerance and response before getting into a clinical trial.

I completely agree that a chemo-break would be good for the mind and body overall, but I wouldn't break from it until you have the replacement treatment identified and scheduled. Cancer can spread and quickly move to Stage-IV if you give it too much vacation.

Maintenance monotherapy (single-drug) treatment may also be an option. If he hasn't already had germline and tissue (biopsy) testing done to identify targetable mutations, this should be done as soon as possible. PARP inhibitor drugs are now an approved monotherapy for PDAC patients with BRCA or PALB mutations.

Since your husband is "only" Stage-III... in which I don't see mention of other organ involvement except the vein, I would not accept his condition as "inoperable" until you've had a top surgeon declare it so. Dr. Christopher Wolfgang at NYU / Langone Cancer Center is well respected for successfully taking on complex cases others consider inoperable. I would recommend him as a top first target if you'd be able to travel to NY for treatment.

If the condition truly is inoperable now, or progresses to Stage-IV, your next step is investigating clinical trials. Knowing which mutations you have (if any) is a huge factor (but not the only one) in determining which trials you qualify for, so get that testing done as soon as possible if you haven't already. Blood/saliva tests such as Invitae can identify inherited (germline) mutations, and a blood test like Guardant 360 or Tempus xR might be able to identify somatic (environmental) mutations if you don't already have biopsy tissue available for a test like Tempus xT.

Wishing you both all the best!

jbnc23 | @jbnc23 | Jun 27 6:03am

In reply to @markymarkfl "@jbnc23 , I don't think there's any magic limit requiring your husband to stop at 12..." + (show)

@markymarkfl

Wishing you both all the best!

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Thank you for your reply. Yes, he had genetic testing early on and no genetic link to his cancer was identified. After his 12th round and scans, we will meet with another Center of Excellence surgeon to evaluate viability for surgery. But he would first need to have his aortic valve replaced, which has a recuperation period of its own.

aprilg | @aprilg | Jun 27 10:09am

I have done 52 rounds of FOLFIRI with oxaliplatin with the first 10 rounds. Dr. Truty from Mayo has extensive experience with vein and artery reconstruction with removal of pancreatic tumors if you are stage 3. Sadly, right before surgery we discovered it had spread so I didn’t get it.

stageivsurvivor | @stageivsurvivor | Jun 27 8:48pm

The top four surgical oncologists with vascular surgery skills that take on the most complex cases involving vasculature are Mark Truty MD at Mayo; Douglas Evans MD at Medical College of Wisconsin/Froedtert Hospital in Milwaukee; Christopher Wolfgang MD-PhD at Langone Medical Center and John Chabot MD at Columbia Presbyterian Pancreas Center-both in NYC.

shakira31 | @shakira31 | Jun 30 7:32am

Good morning,
My husband had 6 months of the same chemotherapy and will be starting five weeks of radiation but he was operated before starting chemotherapy. I highly recommend Dr. John Chabot at Columbia Presbyterian in NY if you are looking for a second opinion. Best of luck and strength to you! Please remember to take care of yourself and allow others to help you with this difficult journey.