Wednesday, March 14, 2012

so...

What do the scan results mean? I kind of wanted to hear that "This is the best response I've ever seen", or "This is just how a complete responder's scan would look after the first cycle." But it wasn't worded that way. It was said that these scans look great, and without the IL-2 they would be looking much worse. I think basically, we have a shot here as a complete responder (5%, gets rid of all cancer for years and years), or partial responder(15-20% gets rid of all but 30%? of your cancer), but for now it is just stable disease. This is super exciting to me.

I now have to admit, as you may have guessed, that I have known about the breast tumors for a while. The last day of my second week in the hospital I felt for them and they had disappeared. I could not believe it. This is one reason we pushed it at the end with the 9th dose on Friday, even though I was so done.

I kept wondering if there was just too much fluid in my body, that maybe the tumors were hiding. But every day I felt, and never could find even a trace. There was one you could see with the naked eye (naked being key here) sticking out for the last month. Then suddenly nothing to see or feel. I didn't want to tell anyone because at the same time these went away, my knee was killing, and another bump popped up on my neck that felt just like the others. It was a small bb at first, then a pea, and now it is a small marble. So I didn't know what was going on. I knew new growth was bad, but disappearing tumors was great. I didn't want to confuse people (mostly my kids), as we didn't know what else was happening. So we waited to talk to the Dr. Unfortunately, the scans we did started from the bottom of my neck and went down, and the brain MRI didn't go low enough to get this lesion either. I don't know, I guess it could be something else, but it feels exactly like the breast tumors (they did stick a needle in two of the breast tumors to collect cells to make sure they were melanoma. They were easy to find back then, and they were indeed melanoma). The Dr. is not so worried about the subcutaneous tumors right now (the one on my neck, and possibly a couple more that showed up on the scan), it is the liver and bones he is watching. The bone that we radiated looks like dead tumor. The large liver tumor has not grown.

These are all good signs. But yes, you can have good response without it getting all the cancer. You can do well on IL-2, but still have to do other treatments after. I guess that is still the most likely scenario. This is why Josh is saying "This isn't good news, it's just not bad news." I am disagreeing. He is usually the one looking on the bright side. Now he says the only news that would be considered good is that I'm cured and never have to go back and never have to worry about it. I am okay with that, because someday they might. Today I'm thinking someday they will. Although, they say upfront there is no 'cure' at stage IV, only 'durable response'. They shoot for 10 years. I guess that feels like forever for me. Are you kidding? Five years feels like eternity, and at ten my youngest would be sixteen. And by then there is bound to be a cure. Really, they are getting close. Go cancer research!!!

9 comments:

  1. I don't know how to express how much I love all of this (except the whole "it's not totally, immediately gone" part). Love the last three posts.

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  2. This is definitely good news. Only in rare occasions would I tell you to ignore Josh. This is one of them! Celebrate!!!

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  3. That is great news! You are truly an inspiration.

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  4. SUCH GREAT NEWS!!!! Miracles do happen.

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  5. When I went to the dermatologist she told me she has patients who have lived with stage IV melanoma for ten plus years. I have a good feeling you'll be one of them:)

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  6. Yes, buy time...as much time a possible, because who knows what kind of cures might be around the corner? We'll keep praying hard.

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  7. Great news Alisa!!! Have fun at the ocean!

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  8. So happy to read all the updates. Glad you're one of those seeing progress, glad you have happy moments and kids that make you laugh. Glad you have Josh. love ya!

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  9. Alisa,
    I don't know you, but a friend of yours (Liz Morrey Romrell) told me all about your battle with melanoma. I have to tell you that your story may have saved me from a similar trial, as I booked an appt with a dermatologist ASAP after hearing about you. It turns out I had a teeny tiny severly atypical mole that they couldn't tell if it was melanoma yet or not, but it's a good thing I got in and had it taken care of. I want to thank you for being my inspiration and motivation to go get a skin screening, and I am passing on that message to all I know. I shared your blog on my blogsite, I hope you don't mind. My blog is bengtzen.blogspot.com Thank you for being an amazing woman, and I am praying for you.

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