PET scan report - by Ane

Monday or Tuesday we expected to hear results from the PET scan, but nothing. Dr. Urba has always gotten back to us right away, so we were feeling a bit concerned.  Today Mark e-mailed him and this was his reply,

 "I looked and there was no PET activity on the scan." 

Later he wrote,

"Scan essentially the same as before.  The CT scan shows minor abnormalities where tumor cells were before but there is no PET activity.  Dead tumor cells with scar tissue? Or tumor cells that are metabolically inactive (i.e. in hibernation) so no PET activity but might come back some day?  Not sure of which but all the options we discussed are still possible. Nothing going on in the heart by the scan.  All good."

Yippee!!!! 

Off the Z!!! - by Ane

Yesterday we met with Dr. Urba, our oncologist. From our last conversation with him we were aware that decision time was coming, so today we reviewed the options:

• Stay on Zelboraf for as long as it works – although from all the doctors have experienced the body always finds out a way around this drug so it’s just a matter of time.

• Go off Zelboraf for awhile which gives the body a break from the side effects, and then go back on for awhile – rotating on and off.  In a study with rats it appears that it works as well the 2^nd or 3^rd round, and perhaps keeps the body from figuring out a way around it as quickly, so hopefully it would buy more time.

• Go off Zelboraf until the tumors start growing again and then start another round of Z.

• Go off Zelboraf for a time and then use another drug – Yervoy (ipilimumab) or Interluken 2 - each has about a 5-6% chance of actual cure.  Yervoy is much less invasive, but hasn’t been out as long as Interluken 2, but so far results have been similar. 

Dr. Urba spoke to Dr. Paul B. Chapman, one of America’s leading experts on melanoma from Memorial Sloan-Kettering in New York, specifically about Mark’s situation.  He recommended going off the Zelboraf for a time and then using a round of Yervoy. 

The only problem with using this treatment when there are no tumors visible is that there is no way to know if it is actually being effective.  Regular monitoring would be required. If nothing comes back for years, then we’ll know it worked! :)

After some discussion we all agreed that it was best to stop the Zelboraf immediately.  This Friday Mark will have another PET scan to see if there are any indications of tumor activity anywhere in his body.  If there is he will start the Yervoy or Interluken 2 right away.  If not, we will wait until our next appointment in six weeks to decide what to do.  At this point we feel most inclined to go with Yervoy.  Why not listen to the expert!  Of course, we will seek heavenly direction, as well.  

We are a bit anxious, yet hopeful!