Wednesday, November 7, 2012

Just ANOTHER bump in the road.....

So, Steve quit taking the Zelboraf over a week ago.  This was a reduced dosage of 3 pills in the am and 3 pills in the pm.  Steve experienced the fevers, the chills, the rash, the pain, the fatigue, the whole nine yards.  The problem is he has been off for over a week and is still having pain and now trouble sleeping due to the pain. 

About 3 days ago, he noticed his urine was beginning to turn a very thick orange color.  This happened while he did biochemo and we knew he probably needed to drink more water. He was drinking lots of water and it was not getting better.  So, yesterday when he woke up (from his 3 hours of sleep) and the whites of his eyes were yellow, I knew something wasn't right. 

I called MDA and was finally able to get in touch with a PA who wanted us to go to MDA Main Campus to have his blood drawn.  We usually go to the Bay Area location for blood because it is so close, but they wanted him to come to the main campus in case he needed fluids and/or needed to be admitted. 

We got to MDA and Steve had his blood drawn and had a chest Xray.  The PA had asked us to call her 45 minutes after he completed the labs.  We went to the Melanoma waiting room to wait out the 45 minutes.  Not only is it FREEZING in the rest of the hospital, I guess it is just our little "comfort zone".  Steve sat and worked and I browsed Facebook (as usual).  After 45 minutes, I called the PA and she said that it was very likely that Steve would be admitted.  His liver enzymes were elevated and his bilirubin extremely high (It was a 7 and normal range is .3-1).  They wanted Steve to have a liver ultrasound and get IV fluids, but luckily he did not have to get admitted. 

Steve had the liver ultrasound and the tech said that she did not see anything (like a tumor!).  So, we were happy about that.  After the ultrasound, we went to the transfusion area and Steve got the IV fluids.  A THREE hour drip! Steve and I started out watching the debate coverage, but he ended up falling asleep since he had not had much sleep the past 2 nights. 

 Watching "The Fight" AKA Election Coverage on CNN

 Two Nights of no sleep caught up to him fast!
 Our "dinner" - hey at least they offered something while we waited 3 hours for the IV fluids to drip!

He had to go to the Bay Area location to repeat labs today.  His PA called me back to let me know that the liver enzymes went down a little and the bilirubin went from 7 to 5.  So, the fluid helped and the numbers are decreasing.  She also confirmed that they did not see anything on the ultrasound.  Steve will repeat labs in 2 days and see how things look.  

I asked the PA today what we will do about treatment?  As of now, he is on nothing to fight the melanoma.  He has scans on the 17th.  She said we would wait and see how his labs look Friday and go from there.  He probably will not be able to take the Zelboraf even on a reduced dosage.  That leaves us with a few options.  A- Beg the doctor to go ahead and waive his "if you have nothing show up in 6 months, you can have surgery to remove the lymph node" and just remove it now, B-Start Yervoy, C-Start a clinical trial at MDA or D-find a hospital with the Anti PD-1 Trial and try to get in to that.  Regardless, we will need to wait and see what the scans look like before we make those decisions.  Obviously if there is any new growth, surgery will not be an option and we will need to figure out which treatment route we want to take.  But, if there is no new growth, I think I will be an advocate for surgery and maybe a clinical trial or Yervoy for maintenance? I will need to do a little more research.  

While we were waiting in the waiting room, we ran into my ex boss, Bill.  Bill has been diagnosed with Merkel Cell Carcinoma.  Bill had surgery to remove the spot above his lip, most of his lip and several lymph nodes in that area.  They surgeons did a FANTASTIC job and you would never even know he had surgery.  One of his lymph nodes came back positive, but the surrounding lymph nodes were clear.  I am not positive, but I think as of surgery he was classified as Stage IIIB.  When we saw him yesterday he was just getting the results back from his PET scan to see if the cancer had spread anywhere in his body, and it had NOT!  So, he is NOT stage 4!  He will undergo radiation and possibly chemo after that to try to prevent a reoccurrence.  Was thankful to hear the news!!

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