Monday, November 26, 2012

Answers ~ Sort of......

Steve had his follow up visit with his melanoma doctor, Dr. Kim, today.  This was a follow up to his 11 day stay in the hospital after an "unknown" virus attacked him.  Before the virus (or maybe it was the start of the virus, who knows?) Steve had started Zelboraf and then stopped because he was so ill. 

When we left the hospital after 11 days, we had no answers.  Every team you can think of at MD Anderson had their hands in Steve's case.  Steve had many procedures (spinal taps, bone marrow biopsies, lymph node biopsies, more vials of blood that could ever be counted, etc.) to try and find what was attacking his body.  Unfortunately, if the clear cut every day virus' aren't found, it takes a very long time to get the results back.  MD Anderson did not even do some of the tests.  For some of the tests, there is only one lab in the entire United States that does that type of testing.  So, many tests were sent off and then we just had to play the "wait and see" game.  Since Steves blood levels were improving on the anti-viral medications that they gave him and his pain had stabilized,  they let us wait from home (mostly so Steve was not hospitalized for Thanksgiving).

Today, we found out 2 tests that come back positive.  One is EPV or Epstein-Barr Virus this is in the same family as mono.  Although the mono test came back negative, a different test confirmed a positive EPV infection.  The spinal fluid also tested positive for HHV-6.  The virus itself is very common, but it is EXTREMELY rare for it to invade your spinal cavity.  This could have been very deadly if we had not caught it so soon.  It could have envaded his nervous system and spread to his brain which could have been deadly.  Luckily, the infectious disease doctors got him started on an anti-viral right away.  They had actually discussed at one point waiting for results to come back before they started him on an anti-viral so they didn't start him on the wrong one and have to switch.  Thank goodness they went ahead and canned that idea!  Both of these viruses are very common and lie dormant in about 90% of people by an early age.  Weakened immune systems, trauma, mental stress, and some medications can cause a flare up.  We will never know 100% what caused the flare up.  I think it was the Zelboraf, but Steve was also extremely stressed at the time due to work and bad side effects from the Zelboraf, so we will never know. 

Anyhow, now that we know what caused it, that is behind us.  He will finish up his anti-viral medication and we will stay on top of any immune related issues.

Now, on to the melanoma.  Since the FULLY checked every inch of his body, inside and out while he was hospitalized, we have a good idea on what is going on with his melanoma.    The Zelboraf had significantly shrank his lymph node and also lowered the SUV from a 12 to a 4 (this is a number used to measure how active the tumor is).  He has been off the Zelboraf about a month now and the lymph node is back to its original size.  BUT, it is still his only melanoma. 

So, where do we go with treatment?  I went in knowing that Dr. Kim would suggest putting Steve back on the Zelboraf, so I was fully prepared with all my questions.  I highly respect Dr. Kim and even though I had planned on shooting it down, after he went over all of the things I had not thought about, I do agree that restarting the Zelboraf is the best bet right now. 

We have other options (or so I thought - haha -you all know I think I know everything!).  Surgery?  Well no, because his immune system is OBVIOUSLY weak right now and that would be too risky.   Yervoy?  Why start something that we are unsure of when we KNOW the Zelboraf was working?  Finding an opening for the Anti-PD1 trial?  This was my choice.  Thankfully, Dr. Kim is smarter than me :)  If we get Steve enrolled in the Anti-PD1 trial and he has some sort of flare up of a virus like he just did, he would get kicked out of the trial.  Once you are kicked out of the trial, you CAN'T get back in.  You have to wait until the FDA approves the treatment, but what if that never even happens?  We DO NOT want to lose our chance at the Anti-PD1 treatment.  It is the latest and greatest.  Also, TIL treatment is another treatment out there.  But, it involves chemo, and depleting your body and making you very susceptible to infections, viruses, etc. 

So, it makes sense to re-try the Zelboraf.  Steve started it tonight.  It is a reduced dose.  Only 2 pills in the am and 2 in the pm.  He originally started at 4 in the am and 4 in the pm.  Hopefully his body can tolerate the Zelboraf at this dosage and maybe even eventually be able to up the dose a little.  He will be seen every 2 weeks for a while to keep a close eye on all of his blood counts and everything, although his scans will still be every 8 weeks (I think?  Maybe 6?)  IF the Zelboraf is not working, stops working, or is too hard on his body, then we will probably move along to Yervoy.  If that does happen, they will probably go ahead and surgically remove the lymph node and harvest it for the TIL treatment.  At that point they would expect Steve to be fully recovered from the virus and his immune system doing better over all and able to handle the TIL treatment. 

So, that is where we stand for now.  I will update soon and let everyone know how the Zelboraf is going.  The good thing is it causes shrinkage very quickly, so I should be able to feel his neck in a few days and know if it is working or not.

Thanks for all of the calls, texts, cards, emails, prayers, etc.  Love you guys!


  1. so glad you got the news....crazy how the medicine for one thing makes our bodies require another medicine for something else...stress is BAD...we all need to reduce it in our lives! Take Care!

    1. Yes, so glad we have some answers. Hopefully Steve will be able to minimize the stress he has going on with work and stuff. No good at all!!

  2. Y'all continue to inspire me with your strength and determination. YOU are a hero to me, Jennifer! Love ya!

  3. Hang in there Steve (Osaka). Praying for you pal. -Joey (GeauxSainz from

    1. Thank you, Joey! I passed along the message to Steve!