Wednesday, July 9, 2014

Yesterday they pulled my cells out of the freezer in Seattle.  It's not a for sure thing until the stuff is running through my veins.  But it will likely happen, and it will likely happen next Thursday.

I have to have another scan before I head down there.  If the scan shows significant growth into my duodenum it may be too risky to do the therapy.  They are worried about that area because if the tumor has reached through to the other side, and if I had some colitis, let's just say it could get ugly.  If a hole was torn through the bowel and I had no immune system to fight off the crap leaking out, we are talking about a potentially fatal scenario.  So they are being cautious.  But we think it will be okay, and are planning that there will be minimal growth.

I am scheduled to be admitted to the hospital on the 17th.  I will start the lymphodepletion phase of the trial that day, where they start killing off my immune system with a couple of chemotherapy drugs.  It should make me nauseous and tired, but they say I will be pretty bored that week.  In the meantime they will be growing my tumor fighting lymphocytes (the cells they took from my armpit tumor), which are now in the millions, to the billions.  They will be put into one bag and infused when my immune system is effectively destroyed.  Then they give you IL-2 to boost your new immune system.  Remember those days in 2012? I don't think people take as many doses, but you are already sick from the chemo so I'm sure it's not picnic.

After you recover from the IL-2 and your blood counts come up you are done.  It could be a little as a 2 week hospital stay (I've also heard of people staying 4 weeks).  They want me to stay up in Seattle for 4 weeks even if I do get the shorter hospital stay, as there are some complications that could arise and they usually happen in that time frame.  

I am nervous about a few things.  Complications are highest on the list.  There are some people who seem to go downhill pretty quickly if things go wrong.  I will spare you the details.  And then the bowel risk, but I feel like that will be okay.  I try really hard not to worry about the money, but the insurance has denied our appeal and it is going to cost a ton.  We will see when it all shakes out, but the best case scenario is just so much money.  I worry about killing off this immune system, I have so much confidence in it, but it isn't working right now where I need it to be working, and I am getting my own T-cells back so that makes it okay.

I am excited about a couple of things.  There is a 50% chance that I will get some sort of response (tumor regression or stabilization).  There is about a 20% chance that I will get a complete response (all my cancer will disappear).  That is a pretty big prize.  I have been after it for years.  This could work, and sometimes it seems like no sacrifice is big enough just for the chance at remission.  

I will keep you posted.

14 comments:

  1. From a medical standpoint, the process is fascinating! From an emotional standpoint...you are one strong woman!! My favorite prayer in times like this is "lead me to the next best thing." I know you will be divinely guided each step of the way! Will you be doing Rituxan by any chance? They used that on my daughter 3 years ago. It wasn't too bad really, not compared to other chemo agents we have used. The side effects were manageable. Sometimes...manageable is good! Sending prayers!

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    1. I love that prayer Kat! The chemos are cyclophosphamide and fludarabine, any experience with those?

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    2. Sorry, I just saw this Alisa...no experience with those chemo agents. Joining in prayer with the hundreds of people who love you!

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  2. good luck Alisa, you and your family are in our prayers, you are a fighter and amazing!!!!

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  3. I have no doubt you'll be part of the 20% that kills all the cancer. As for the medical bills...my husband just ran in the American Fork half marathon on June 21st and all their proceeds go towards helping families who live in Utah County pay for their cancer bills. Maybe they can help you? Check out their website...just a thought?

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    1. Those are pretty good odds, right? That is a great race, I think it is for IMC hospital patients but I will look into it.

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  4. We are constantly thinking about you and praying for you. Thanks for the update and we will definitely still be praying for everything to turn out the very best.

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  5. do you have a gofundme or something similar set up where people can donate?

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    1. We are waiting until this is a for sure thing, and I am requesting a third appeal from the insurance. Once we know we can't get them to pay and I am for sure in we will set something up. Thanks so much for asking. When anyone offers help it makes me cry.

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  6. Let's hear it for remission! 20% is pretty darn good. Please let me know if you do something to raise money because we want to help you. I can help you with kids, dog, whatever as well. Love you so much Alisa. Go! Fight! Win!

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  7. We are praying for miracles, Alisa! We have seen them in the past and know they are there for you in the future! We will be watching, waiting and praying. Love you so

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  8. Alisa--hard to read this, but knowing your support group and your incredible faith...more miracles can happen.
    Brandon is moving to Seattle the 2nd week of August. He will not be working at first, and would love to do anything he can to make you comfortable. I am going to call him and let him know what's up and I am sure he will call you guys when they pass through Utah enroute to their "real lives" in Seattle. Love always to you and your amazing family.

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  9. Alisa - I'm glad your friend Brooke asked about a fund. I was wondering how we could help. That chemo nausea sucks - I will hope and pray it isn't too bad for you. There is a lot of confidence and prayers this way that this will work for you and your family! I can't express enough how much you are loved and thought of.

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  10. Alisa,
    You don't know me, but I have been praying for you daily in Oregon. I too would love to contribute to your fund as soon as it is set up. You are not only an inspiration to those of us following your blog, but a Miracle to your precious family and friends. Keep believing in your cure... we all need you on this earth. With love, hugs and faith we will be watching your cure unfold while praying for your protection.
    Hugs... from Gretchen Gear

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