Monday, August 6, 2012

Where's the AAA Triptik?

One of the things about having this disease, that doesn't have a proven roadmap, is that there seems to be a lot of potential routes to get to Curedville.  That's great.  The problem is that most of the routes that point to Curedville end up as dead ends (Is there a different term I could use, please?).  To be honest with you, if we can only find our way to Remissiontown, I would be pretty psyched.  In fact, I wish more people lived there.

We've been spending a lot of time over the last couple of weeks learning about the different routes available to us and trying to make a decision of which way to go.  Our medical oncologist (I'll introduce you to her later) is kind of like our navigator.  She has presented us with a couple of options and explained to us the possible roadblocks, detours and bumpy roads that may lay in our path.  By the way, she's been fantastic with us so far. 

The first leg of our journey will involve some pretty serious drugs and a couple of extended stays in the hospital.  After I'm finished with my radiation treatments (which are beginning to show some results in the form of less pain), I will immediately begin the immunotherapy interleukin-2 (IL-2).  I'll be in the hospital for 5 days receiving up to 14 infusions of IL-2 followed by a week at home and then back to the hospital for 5 more days and up to 14 more infusions.  This one could prove to be a bumpy leg of the journey with some pretty serious side effects including low blood pressure, irregular heart rhythms, accumulation of fluid in the lungs, fever, vivid dreams (sweet) and very rarely death (not so sweet).  The response rate to high-dose IL-2 ranges from 10% to 20% and approximately 4% to 6% of patients may obtain a durable complete remission and be long-term survivors.  In other words, there is a 20-60% chance of durable remission if I have any response rate, but there is only a 20% chance of that.  That should clear it up for you if you are Yogi Berra.  Seriously, it would be pretty sweet if this route took us directly to Remissiontown.

Turns out that there are some routes that are not available to us at all.  Some treatments require that I and/or my cancer have certain characteristics.  One of them is a very new drug that in order to be effective, my cancer needs to have the BRAF V600E genetic mutation (If you want to know what that is you'll have to look it up yourself since I'm not a doctor).  The drug is called Zelboraf and it has shown to be very effective at extending the lives of those with metastatic melanoma.  That is very exciting news except for the fact that I have tested negative.  Sorry folks, this road is closed.

Luckily, we do have another highway that is open to us.  This one involves a treatment called adaptive T-Cell therapy.  Basically, my own t-cells are harvested from my body, cultivated in the lab and supercharged (my term, not a scientific one) and then introduced back into my body.  At the same time, I would be given another drug called Ipilimumab (or ipi for those not so nimble of tongue).  This is another form of immunotherapy and has shown some very promising results also.  If necessary, we will be heading down this road after the IL-2 leg of the journey. 

I'm convinced that we will get through this.  Don't get me wrong, I know that things are going to suck for a while.  There are no shortcuts.  We'll make wrong turns, run out of gas and wish the road was smoother and shorter, but we will make it to our destination.


14 comments:

  1. Glad for the update. I like "road blocks" instead of "dead end." You can do it! I'm so happy there are so many opportunities to get to Remissiontown and perhaps even curedville!

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  2. Rick, thanks for keeping us updated. As the road gets challenging, don't forget, there's a lot of people who are behind you.

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  3. Teri Lowery-TobiasAugust 6, 2012 at 1:58 PM

    I am sure that "Kryptonite" can work better than "dead end". Even Superman got over that eventually!! Nothing but incredibly positive energy is being channeled to you from our house!!!! As Brian says, "If anyone can get through this, Big Dog can!!!" :):) Hang in there! The Tobias family is cheering you on loud and clear!!!!

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  4. That is a sweet cape. Do you get do wear it during radiation therapy? Keep up the awesome spirit and inspiring writing, Slash. Love it.

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  5. Thanks for the update! I hope Remissiontown is right around the corner and that it is a quick journey. I love the updates. You are a great writer. Keep strong... you are doing great. Good news on the radiation too.
    - Karen Saino

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  6. Stay strong Slash! Thanks for the updates and the humor. You're in my prayers!
    This is Pom-Pom by the way.

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  7. Rick,
    I am Edna London and my son Kevin is married to your cousin Christy. Christy was telling me this week about your bout with melanoma. I just wanted you to know that Jack and I will be praying for you and your family as you travel your route to Curedville and the final stop Remissiontown. Tell Bill and Dana hello for us. Blessings to all of you.

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  8. Thanks for sharing all the complicated info Rick - sounds like you are in great hands. I was happy to see the picture of you at the SCCA - I worked for Fred hutch while they were creating the SCCA and it is an amazing place full of scientists and doctors who are obsessed with beating cancer. So much is possible with a strong positive mindset and you've got it!

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  9. Love your spirit Rick Boden! If anyone can rock this thing, you can, cape and all. Know that we Byrons are here for you in every way, we can cover grocery shopping, meals, delivery service, child care, chauffer service, and just plain hand holding. We love you.
    Michelle, Julian, Sophia and Trey

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  10. Hey Rick! At least you don't have to worry about losing your hair! In all honesty hang in there!! So at the begining of this summer I thought .. wow it has been a LONG time since I cleaned out my freezer (the one in the garage). I seriously found a meal from My Girlfriends Kitchen! I was cracking up because I could not remember how many YEARS! it has been. I now have a reminder in my calendar to clean the frezer every 6 months. Thanks for sharing your journey with us and I will be checking in to see how you are doing! Thoughts and prayers your way!
    Lisa J

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  11. Rick -- just wanted to let you know that Andy, the kids and I are all thinking about you and sending healing vibes along what I'm sure is a very busy healing highway between Denver and Bainbridge Island. Keep up the fight, and so sorry about the bacon! All our love to you, Jen & the girls!

    Ginny Creighton

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  12. Keep 'em coming Captain....xoxo

    BTW....this is Mimi.....this is the only way I could publish this.....

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  13. Slash - The fact that Triptik is in your vocabulary, is quite impressive. Love the blog. You are an inspiration to us all, my friend.

    - Murph

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