Decisions, Decisions! - by Ane (& Mark)

The problem with going to the Oncologist is that it all becomes real again.  Mark is doing so well, it seems like the cancer is gone; we dogged that bullet and away we go with life.  But our Doc brings us back to reality and we have to make life or death decisions or ones that could have that kind of impact.

Yesterday was our 6 week check up with Dr. Urba.  Since Mark is doing so incredibly well the doctor doesn’t think that we need to hurry to start the Yervoy.  We might as well enjoy our time of Mark feeling so good! 

The protocol for Yervoy (ipilimumab) is a 90 minute outpatient intravenous injection every 3 weeks with a total of 4 injections.  We had thought that he would start the Yervoy in a few weeks, taking one or two doses before our company trip the end of April and the rest after, but we learned yesterday that the side effects can be very serious. We need to be close to good medical facilities during the duration of the treatment. 

We had lots of questions, i.e. “Does the drug work if there are no tumors? Is it better to wait until they start to grow?”  Dr. Urba told us that there are NO answers to these questions.  This is the ART of medicine because we are on the cutting edge.  There is no real science yet until more research is done - which is in progress.  He did indicate that side effects tend to be worse with less tumor activity which gives us another reason to postpone starting the drug.  Also, if there is some tumor activity it is possible to determine if the drug is working.  

Of course, we are anxious to know if any tumors are growing so Dr. Urba ordered a chest X-ray.  It’s the least invasive.  PET and CT scans cannot be done so often.  Mark can get the X-ray whenever we are ready.  Since it’s only been 5 weeks since the PET scan we feel inclined to wait at least a few weeks before we expose him to more radiation.  Also, we want to move it closer to the trip.  If tumors show up we will decide whether to start the drug right away or wait until right after the trip. It depends on their size and rate of growth.  If there are no tumors we will rejoice once again! 

So for now we are doing nothing medically, but we can enjoy every minute we have together, and we are doing just that!

The One-Year Mark - by Ane

One year ago yesterday Mark had the first x-ray of his chest followed by a CT scan along with a call from the doctor that he needed a needle biopsy as soon as possible.  
 

One year ago today we came to understand that these tumors were most likely metastatic melanoma.  The reality of the seriousness of his condition became more evident.  During the next ten days the diagnosis became increasingly bleak as we learned of tumors not only in his lungs, but also in his liver, heart, and other areas of his body.  

Yesterday Mark spoke in Stake Conference looking very healthy – less of him and less hair, but feeling great!  The closing song was “How Firm a Foundation” - our favorite, especially the 3^rd verse:

"Fear not, I am will thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand."

Tears flowed freely of gratitude, as well as hope for healing.  

Today we are sitting in a nice room on the coast watching the waves and enjoying a quiet day together.  I’ve reread the events of one year ago.  Did it all really happen?   Mark seems so healthy right now.  How blessed we are - he is here!!!  Miracles have happened.  Our hearts are brimming with gratitude for so many who have offered prayers in his behalf and who have been so supportive!  We have felt Father’s loving arms around us. There is no doubt that He hears and answers prayers.  This time the answer was what we wanted.  The extension was granted.  Last year we were able to enjoy two wonderful family vacations – one with just our children and another with children and grandchildren.  Mark and I went to Israel – a dream come true.  Rachel got married and she and her father shared that special father/daughter dance.  So many sweet experiences!

We don’t know what the future will bring, but we totally trust Him.  We pray for continued guidance in what we need to do to keep Mark here.  We will move forward with faith. 

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!