Scan vs. symptoms

Posted by asingh90 @asingh90, Jun 13, 2023

Hello everyone, my Mom has been on a vaccine/immunotherapy trial for her advanced rare form of pancreatic cancer targeting the specific gene fusion she has. Her symptoms markedly improved in the first two months on treatment. She went from barely eating before the treatment to eating at a close to normal amount after. Her nausea also went down a lot since the treatment began and her energy level increased too. However, her scan showed that the cancer progressed in one part of the body where the majority of her cancer is, while stabilizing in the other less involved organ. We've been told that in immunotherapy, a patient can have a delayed reaction and the scan can also show increased tumor activity initially due to T cells being activated. However, the Dr told us that if the next scan does not show tumor shrinkage, he will discontinue the treatment. We are very concerned because we know in our hearts that she is doing better on the treatment because she is feeling so much better in every aspect, but we are worried that the next scan may not show regression and they will discontinue it. Has anyone else had a similar experience that they were feeling much better on a treatment, but the scan was worse after? Especially those on immunotherapy, since that works much slower than chemotherapy. Any advice would be much appreciated.

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markymarkfl | @markymarkfl | Jun 13, 2023

My dad's PET scans improved in one area and got worse in another after 4 months on immunotherapy (Opdivo + Yervoy) for his mesothelioma. His onco was planning to continue treatment despite the ambiguous results, but my dad was declining from the treatment rather than improving like your mom, so treatment was stopped.

Now that he's been off all cancer treatment for 6 months, he's not getting any more scans, so we don't know if there was a cumulative, coasting effect of that treatment on the cancer or not. (I thought that would be a good data point for a research-oriented doctor to collect with another scan, but he was not remotely interested.)

I've been told that sometimes the scans can't tell the difference between dead/necrotic and live tumor tissue; i.e., treatment is killing the cancer but not (apparently) reducing the size of the tumor. That might be one question for your mom's oncologist after the next scan.

The above was relayed to me in the context of MRI for my pancreatic cancer. I asked if a PET scan would distinguish live from dead tissue by highlighting the sugar uptake in live cells only, and got a vague, confusing answer that didn't lead to any more PET scans or clarity about the miniscule change in tumor size. 🙁

(After the Whipple, pathology confirmed some of the tumor was indeed dead.)

But my case was at a center that doesn't seem to like PET scans for PC, other than initial diagnosis to check full body for mets. I understand PET may cost more than MRI/CT, and PET may not have as much resolution unless also combined with MRI or CT, but MRI of the abdomen/pelvis with CT checking for chest/lung mets is their "gold standard" in monitoring progression of PC.

Since your mother is on a trial, it would probably be difficult to find another provider of the same drug if the current oncologist drops her. Since the current treatment is making her feel so much better, I would at least start the search for other ways she might be able to get the drug outside the study (compassionate use or rare/orphan disease case), from the same oncologist or a different one. Be very nice in your lobbying to keep her in the study! Different trials have different criteria for when they will actually stop treating a patient, so there might be something in the fine print you can leverage to your advantage.

One thing to inquire about is whether stopping your mom's immunotherapy requires a tapered stoppage versus all-at-once, and if other meds (e.g., steroids) are required to "calm" her immune system while the treatment drugs wash out. My dad's therapy was stopped "cold-turkey" with no other drugs (possible malpractice according to a few sources). The combination of his decline before stopping therapy and going cold-turkey afterward put him in the hospital for two weeks and rehab for three.

I would do anything to get my dad a treatment that makes him feel better. He did get steroids after that hospitalization and during a subsequent hospitalization a few months later, and there appeared to be a correlation between that and his improving energy levels. As he declines again, I started researching whether another round of steroids could help my dad again with his latest decline, but I've found a good amount of recent literature tying even low-dose steroids to psychotic reactions, especially in elderly patients, and decided to not even ask his doc about it.

If your mom's onco says she'll need a course of steroids to taper off her immunotherapy, you should ask whether the possibility of steroid-induced psychosis plus the physical and psychological effects of stopping a treatment that has her feeling so good would be an unnecessary risk of doing more harm that good. Might be one more way to keep the treatment going... 😉