Wednesday, November 21, 2012


Because there is disease progression we need to try something else.

The four options we are considering:

1) A trial they are doing to inject the tumor itself with IPI and IL-2.  This is a phase 1 trial, so there is no data on effectiveness.  But in theory, it could work.

2) BRAF inhibitors (Zelboraf).  I really want to save this till the end (a good percentage of people respond, but the effects are usually short-lived).  Doctor agrees.  Try to get another immune response first.

3) Look for an Anti-PD-1 trial around the country.  They took a quick look and there might be one in Oregon recruiting participants.  Because we got the cancer out of my brain (still gone, by the way!) I may qualify.  These trials are hard to get into, but they will call around an see what we can do.  This drug is similar to IPI, without the bowel side effects.  A very promising drug.  I would want to try this now while I have a chance of qualifying. 

4) Radiation and continue the Temodar.  This is not a bad idea.  In fact, it might be risky to take me off the Temodar (which we will have to do with any of the other options) if that is what is keeping it out of my brain.  If I can't get into a trial, I think this is my next move.  For now the Temodar is on hold until we find out about the trials. 

I did cry some big tears this evening.  Ginger kept licking them off, despite my protests.  Dumb dog!

I got over it pretty quick and got into research mode.  Josh put the kids to bed.  Luke tucked me in (he does this when he can tell I'm too tired to tuck him in).  We are looking forward to a long weekend, and then we should be able to get a more definite plan together. 

Overall, I am not too sad about the results.  What can you throw at me at this point that I can't beat down?


  1. All the decision making has got to be one of the hardest parts of dealing with cancer. I know you'll make the right one! Thanks again for the update.

  2. Everyone is praying for you, still, only "harder". Glad there are those options available to you. We love you.

  3. Your boys and your dog are so amazing - and you, even you, Alisa.

  4. I know you don't know me, but I found your blog through Christina McEvoy. My husband has stage 4 melanoma and is treated at the Huntsman. It seems you may be going there too. We have 3 small kids and we live in Provo. I have followed your blog and was so happy when you were NED (or almost)a month or two ago. I'm sorry to hear you've had tumor progression.

    I wanted to let you know that my husband has been on Zelboraf for 18 months with NED!! I know the median time for this drug to work is like 7 months, but it's working much much better for us! I don't know if it's right for you, but I wanted to let you know our experience.

    I wish you and your family the best in this difficult fight!

  5. I saw you Wednesday at the clinic while I was waiting for my own scan follow-up visit. I wish I had said hello. You looked beautiful. I, too, had news of disease progression. Since my diagnosis in March 2011, this is the first time I've had more than one tumor. Now I have four, maybe five. It's scary. But, I get so much hope from your posts because I can see that you've been down this path and things have worked. I pray whatever treatment you choose will also work...and work well. Who knows? Maybe this PD-1 trial thing is one of our miracles...