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My dad was offered immunotherapy with Opdivo + Yervoy at two centers on their conclusion of epithelioid, and a combo of three traditional chemo drugs by the third center. I'll have to dig for notes from a year ago. I don't remember if the third center's recommendation for traditional vs immunotherapy was before or after the revelation of sarcomatoid cells as well, but their primary alternative was also the Opdivo + Yervoy. I remember that one of the three traditional chemo drugs was carboplatin, in part because of his ATM mutation, and in part because at his age (85) the other platinum-based drugs (Oxaliplatin and Cisplatin) would have been particularly hard on him.

In the end, he chose the Opdivo + Yervoy at his hometown oncology clinic, with about 1-1.5 hours of infusion every three weeks (one drug every time, the other added in on alternate visits every 6 weeks). After about 4 months, the fatigue really started getting to him. Part way into his 5th month, the updated PET scan revealed the treatment wasn't worth the fatigue he was experiencing, so he stopped treatment in early January of this year.

Unfortunately, his oncologist didn't realize how far my dad had declined, and was about to recommend continuing treatment. Even more unfortunately, when a patient declines like my dad did on this combo of drugs, the protocol recommended by the manufacturer (per my understanding, and I'm not a doctor!) was that he should have been given a course of steroids to calm his immune system and help "wash out" the drugs from his system. That did not happen, and my dad spent 2 weeks in the hospital and 3 weeks in rehab as a result.

It was his experience that cemented my recommendation to always seek out a center of excellence for your treatment. You might get the same DRUGS at a small-town clinic, but you might not get the same CARE as you would elsewhere.

With my dad, the third center we consulted said if he had an "ALK fusion" or another similar mutation/fusion that several targeted therapy drugs could have been alternatives, but his and his disease's genetics did not qualify him for those. Given his advanced age, other comorbidities, and extent of metastasis, surgery and radiation were not options for him. He did have a pleurex drain catheter inserted after diagnosis to remove the fluid, but he was able to have it removed after a few sessions of the immunotherapy seemed to dry things up for the most part. You have to keep an eye on the fluid accumulation because it takes up space your lung needs to expand, and can also collapse your lung and get it kind of stuck together and hard to restore.

One of the interesting treatments that's approved for treatment of mesothelioma (maybe only in clinical trials, not sure) is called Tumor Treatment Fields equipment. Basically no side effects except skin irritation, it uses a battery pack with a radio transmitter connected to little "electrodes / antenna patches" on your back and abdomen, and sends a tuned electrical field through your body, disrupting the tumors' ability to reproduce. Sadly, none of the doctors we consulted on my dad's case were interested in pursuing this path. It seems there is a lot more paperwork involved than most want to take on, but if you find a center/doctor already doing a clinical trial with it, half the battle is already won.

The other interesting, non-conventional treatment that is an option is called HITHOC (Hyperthermic intrathoracic chemotherapy), similar to a treatment called HIPEC for abdominal/peritoneal cancers. I'll leave that one for you to research and pursue, but I recommend asking a couple expert doctors about it if you can get multiple opinions. If you're strong enough to get a combo of surgery plus chemo like that, it might be worth a go.

The other really weird thing about my dad's experience was related to oxygen; i.e., he started off with some pretty bad sleep apnea, but inadequate lab tests never got him qualified for oxygen to be covered by insurance. Then he lost enough weight during his treatment that sleep apnea was not much of a problem, and his pulse-ox tests were always high enough during exertion tests that he couldn't qualify for oxygen that route either. It seems like despite low iron/hemoglobin/hematocrit/RBC counts suggesting some kind of anemia (implicated in his fatigue), they were never low enough. I *think* he has some type of non-iron-deficiency anemia that, despite having "adequate" oxygen in his blood, he's not able to move that oxygen into muscle tissue, and that's why he gets so fatigued by everything. (That plus his Afib.)

Anyway, my last words here are to just be really assertive about getting the care you need and want. My dad has never been one to question doctors, and in the course of his last several diseases, doing so earlier and more often would probably have led to better outcomes. Go fight this fight with all you've got, but do what you can to have your support system fully engaged, and take care of yourself -- food, vitamins, rest, and breaks from therapy if you need them. I hope to read your success story years from now! 🙂

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Replies to "My dad was offered immunotherapy with Opdivo + Yervoy at two centers on their conclusion of..."

Thank you for such caring and experienced advice. You have given me more strength to face the diagnosis and seek treatment. I wish you and your dad strength and comfort in the coming days. I know those words are inadequate, but you are both in my thoughts . . . .