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March 19, 2014 at 7:08 pm #21880jimwParticipant
Hi – noob here. Thank you for the existence of this forum! So much great information available here, wish I would have found it sooner, it would have saved me a lot of time researching stuff on my own.
Just a few weeks ago, I didn’t know squat about cancer. Then out of the blue, my dad found out he has stage 4 melanoma. He has mets on lungs, liver, spine, adrenal gland, funds of stomach, and brain. Pretty hard to believe at first since I just saw him last over the holidays in Dec and he seemed fine. Then he and my mom went to Hawaii for a few weeks, and he was feeling tired and his back was sore. He figured it was just from sitting in the chair in a weird way, but it didn’t get better when he got back, so he went into his doc who ordered a chest x-ray. That’s when they saw the spots, and ordered CT scans, MRI, etc, and that’s when he craziness started. Within a week he had this diagnosis. I went up to visit and help out for the past 3 weeks. He immediately started 2 weeks of whole-brain radiation. Then on Thurs immediately after his last radiation treatment, he had his first Ipi infusion.
I had also found some studies showing that GM-CSF used in combination with Ipi seemed to improve the efficacy and reduce the side effects of Ipi, so I mentioned it to his oncologist who was willing to try it. Thankfully the insurance covered it, so he’s also getting daily Leukine injections.
He’s also changed his diet (I listened to the audio book “Anti-Cancer” on my drive to visit, and it had some great suggestions in this regard), and is taking some supplements like modified citrus pectin. Basically most everything I’ve been able to find that might help, he’s been willing to try. I know he wants to fight this. But this disease is already at a very advanced stage. At his oncologist appt before the first Ipi infusion, before we left she pulled me aside to show me some of his blood numbers. She was concerned mainly with his LDH. She said high values indicate rapid cell growth. A week earlier he was already way high there. Normal is 135-225, and he was at 1575. Then in that week it had grown to 2133. She basically said he HAS to respond to the Ipi, or we’re likely talking a matter of weeks realistically.
Pretty hard to take this all in. He wasn’t showing hardly any symptoms of the cancer when I first got there 3 weeks ago, other than a slight limp and just being pretty tired. In the 3 weeks I was there, he went from that to using a cane, to using a walker, to hardly being able to get around much at all now. Hard to see.
It seems like he’s doing everything possible at this point, outside of a clinical trial. I did also see the PD-1 expanded access program info and mentioned that to his oncologist. I think she wants to keep those as a backup if the Ipi/GM-CSF doesn’t work… basically she felt he needs to do something *right now*, and it seems like the Ipi/GM-CSF is the best option.
Hoping for the best. Thanks for listening, and any other suggestions welcome.March 19, 2014 at 9:04 pm #63883charissa1969Participant
No suggestions, just wanted you to know how sorry I am that your dad is going through this. Continue to post here; when I was first diagnosed, I found it so helpful to talk things out with people who understand.
CharissaApril 2, 2014 at 4:53 am #63884abdormaParticipant
I am kind of late to the table in commenting here, but I am wondering if your dad’s oncologist has biopsied any of his tumors and had it tested for the BRAF mutation? If he hasn’t, you might want to ask about that. The BRAF drugs can be “wonder” drugs for some folks in either reducing the size of tumors or eliminating them completely. My husband responded beautifully to one of them for about six months; it definitely lengthened his life. I do not believe the BRAF drugs have yet to be found to be effective in treating brain mets, but if he is having WBR, they are being treated already.
It is my understanding that IPI works best in folks who have a lower tumor load and it sounds like your dad has a pretty significant tumor load. It also takes longer to work.
No matter what happens, I am so sorry that your dad and your family have to go through all of this. I wish you the best in this journey.
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