Wednesday, October 29, 2014

bitter pills to swallow



It's done.  I just took my first dose of the BRAF and MEK inhibitors.  I have been dragging my feet a little on this one.  It turned out I needed a baseline brain MRI before I could start the drugs, and they couldn't get me in until today.  I was happy for the delay.

I have had some time to research my options (or figure out if I had any).  I communicated with several doctors around the country.  The consensus is that this should be my next step.  I also asked some people to share long-term success stories after taking these medications.  They are out there.  Good stories are out there.

The drugs are dang effective.  I can't really wrap my head around how exactly they work.  From what I understand, they block a pathway the cancer needs to make a certain protein? These drugs are called targeted therapies.  They don't work like a chemotherapy or immune therapy.  According to the information that came out earlier this year (when the combination of these two drugs were FDA approved), 76% of patients have a response.  Some of those responses are quite dramatic and happen within days of taking the pills.  The median duration of the response is 10.5 months.

Which brings me to the reason I have saved these drugs for last.  Eventually, the body finds a way around the blocked pathways and becomes resistant to the drug.  There are numerous stories that once the body figures that out, the cancer comes back with a vengeance, giving the patient very little time at that point.  These stories are not what I would call few and far between.  I worry this will mess with my chance for a complete and long term response.

For years now I have refused these drugs based on the great responses that my cancer has had to immunotherapies.  I believed we could cure this with that approach.

But it looks like I need to try a different route for a while here.  I don't know why this always has to be a nail-biter with me, but to be honest, I'm having pain now from the tumor.  Ibuprofen has been enough on most days, but there have been two nights where I have had to take pain pills.

It hurts to put my right leg into pants.  It hurts to twist my body.  It hurts to run or jump.  It hurts to take a deep breathe.  It really hurts to laugh.

So for the first time in almost 3 years I'm okay with taking the targeting therapies.  Not only will they take away the pain, but I will have many other options available once I've tried these drugs (most trials I'm looking at require that you have tried these drugs, and my Florida drug will be available after I'm on these as well).  And of course there is the chance that I respond to them for a long time.

So, we move forward.  The side effect profile for this class of drugs includes fevers, fatigue, diarrhea, arthritic pains, skin rashes, and hair thinning.  I really don't know how I will react so we will see how it goes.  Thank you for your prayers in our behalf.  We are doing just fine.  It really is amazing when we get to an obstacle that seemed insurmountable before, it turns out to feel like just another bump in the road.  We can do hard things.

14 comments:

  1. Yes, you guys are super brave and tough. I hope you get a great, long term response. I hate that cancer hurts.

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  2. I'm always praying for you Alisa!! Love you!!!

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  3. Alisa don't feel bad. I was hesitant too at first, but back in July I had to have a craniotomy and SRS due to a brain met, so I started taking these drugs right after that. Being BRAF+, I have no other choice but take these drugs if I want to move on to PD1 later on; ipi failed me in 2011. Side effects have not been too bad so far. I've had fever and chills only once; my hair is shedding more than usual, small price to pay considering the alternative. I hope and pray we'll both be long time responders. God bless!

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  4. our prayers are always with you!!!! go fight!!

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  5. You are the queen of doing hard things. I admire you for how strong you are over and over again. You are teaching your boys how to be resilient. Amazing. Send me Halloween pics. ��

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  6. I can't say it enough, you amaze me. I hope you're going as Super Women for Halloween. Have fun with your kiddos tonight!

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  7. You and your sweet family are always in my thoughts and prayers. Sorry for another bump in the road. Love you!

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  8. Always something to face and you do it with class and daring. I love you Alisa.

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  9. Josh and Alisa
    We are cheering and praying for you every step of the way! Love you so!

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  10. You've got so many people cheering you on...you can do hard thing and you do them with such grace. Always praying for you and KNOW that it will work out for the best. Lots of love too!

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  11. Hang in there and stay the course! Don't even think for one second that this isn't going to work out. I KNOW it will. I have always had a good feeling about your outcome, and I have faith that you will hear the sweet words, remission, one day. Envision hearing that, envision living a long life, envision old age, all those things help your empower and harness your sub-conscious (I had a hypnotherapist that helped me with this).

    I think you are being smart about your choices and path. I probably would've done the same exact thing if I were you. Being informed and proactive is the best way to go. And you're not giving up on hope, so those are all good things. As always, I am praying for you. XOXO

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  12. Love everything about you, Alisa!!! You are a r-o-c-k-s-t-a-r and empower so many people. I'm so very sorry you are in pain and have to go through this nasty trial. The Lord is on your side. You got this. Go, fight, WIN!!!

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