Still clean! - by Mark

The x-ray we took last Friday looks the same as before with no tumor growth, just some leftover tissue doing nothing. Hurrah! Still tumor free.

I asked Dr. Urba how long do patients usually go before the tumors start growing back?  He said, they don't know.  Usually, they don't go away. Of those that do there are not enough to draw any conclusions.  Those that have had them come back have been months but there are so few.  The drug is new; those who's tumors shrink to nothing is rare and the idea of stopping and then restarting is even newer, so we are on the very cutting edge of treatment and don't have a clue.

The side effects are slowly going away.  My hair is still very curly (kinky/frizzy) but actually lays down, a bit.  The joint pains are gradually going away and the skin growths are slowing down.  I am gaining weight again and food tastes great.  I am still on the nutritious diet and will be forever:-)  I actually quite like it now.

We will be on the company cruise in April and so look forward to being with our Precoa friends again.

It is all of your love, faith and prayers and the blessings of heaven that have extended my life.  Now every day is a bonus day, a day for loving, learning, sharing and serving and always another day of gratitude!!

Love forever,
Mark

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!!!!