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October 5, 2014 at 5:30 pm #22194Catherine PooleKeymaster
How is Matt doing?October 6, 2014 at 3:20 am #65541TeamMattParticipant Hey Catherine,
Thanks for asking. I’ve been meaning to post an update, but also holding my breath a little. The short answer is that everything is going about as well as we could possibly hope. Matt aced his pulmonary test (drawing into question the results of the disappointing test he took here in Indianapolis several weeks earlier) and met all the other requirements to start treatment in Dr. Hwu’s super-aggressive trial at MD Anderson. And he went right into it, the evening after getting the go-ahead.
This is a high-dose ipilimumab trial (10 mg per kg) that also includes IL-2, cisplatin, interferon and I forget what else. (I’m told that he had an IV tree with five different bags on it–and still managed to shower himself every day.) The treatment schedule is six days on, then two weeks off, then repeat and repeat and repeat, etc. He finished his first six days on Wednesday, and flew home on Thursday night. The main side effects were nausea and itchiness, both of which were well managed by the staff. His sleep schedule went all to hell, and he spent the first couple days at home sleeping. He felt like he had been run over by a cement mixer–“This is the worst I’ve ever felt”–but has been recovering pretty well at home.
More praise for MD Anderson: Our parents can’t say enough about the place and the level of hospitality and care. Also, Southwest Airlines has been very supportive with our travel needs. (I mean, my DAD is barely ambulatory, and HE was satisfied with the experience, which is saying something.)
Most recent scans just before treatment show across-the-board growth in tumors, but still no presence in the brain. Overall, those of us who are not sick are very encouraged by the last couple weeks. As my Mom says, the worst part about the period between diagnosis and treatment is not knowing what’s going to happen next. We’re pretty convinced that Matt’s now in the best place and getting the best care possible, based on how aggressively he wants to attack the disease.October 6, 2014 at 5:14 pm #65542RJoeyBParticipant
Thanks for the update. You, Matt, and your family continue in my prayers. Glad to hear that there weren’t any pulmonary issues prior to or during treatment; I’d tend to agree and wonder about the results of the original test.
Matt’s experience and the way he described it sounds very much like my own with the IL-2 portions of my prior TIL cell treatment. “Worst I’ve ever felt” and “feel like I was hit by a truck” were common statements. The closest comparison, which understates the actual misery and to some might not sound too bad, was it being the absolute worst case of the flu ever. But thankfully, recovery is usually (but not always) quick and starts as soon as the dosing stops. Hopefully this bodes well for his recovery from each of the next rounds. There are pros and cons to knowing what to expect having been through this first round. For me, the pros of knowing outweighed the downside of uncertainty during the first round.
Quick note, too, on sleep. I also struggled with sleep when I felt mostly recovered otherwise. Part of it was certainly mental during the first three months after my diagnosis, but it was definitely worse during the IL-2 rounds (and recoveries) of my treatment. It can be such a snowball, where the less sleep you get, the worse your mood gets, causing less sleep, etc., then add on the apparent effect of IL-2, it can get to the point where you feel like you’re starting to lose it a little. This is where relaxation and meditation techniques can help, but also, don’t be afraid to have Matt talk with someone about medication to assist with sleep, if needed. Sleep can just make such a huge difference.
Best to all of you,
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