I had my PET (body scan) and brain MRI on January 8.  I received the body results January 9 and the brain results January 10.
The doctors say they have never seen a more favorable response to stage IV melanoma treatment than they have seen with me.
To quote them “these are dream scans”.  With two months of chemotherapy there are no active tumors below the brain and all brain tumors are decreased in size.
They’ve seen it before, but never seen it so quickly as this.
I'm truly overcome with gratitude for the tremendous support that I enjoy.  My six siblings from around the country gathered with me for Thanksgiving.  I told them that I would never choose to have cancer, but it is astounding how you get to see the best attributes of your friends and family when you are in such an extremity.
As you know, I believe in keeping the blog concise, so I will close this update succinctly.  I will continue to take the chemotherapy daily.  My side effects from the chemo are vastly decreased.  In fact, my experience has already benefited another.  My body rash was severe and a side effect previously undocumented by Genentech.  it is now mostly healed.  Samples of my skin from scalp, leg, and abdomen were sent to Genentech.  An out-of-state MD recently had a patient with a rash reaction so severe that they were contemplating pulling the patient off the drug.  The MD called my MD.  My MD gave the treatment protocol, and they have kept the patient on the drug.
Again, thank you for your prayers.  I truly believe that I’m blessed by a miracle due to the many pleadings, faith, and hope of my family and friends.  Although I do not feel deserving of such generosity, I'm grateful for it.
Love,
Mark

Chemotherapy Helping

I began the chemotherapy, which I take orally twice a day, on October 30.  My first and only brain MRI on October 5^th revealed 8 brain tumors.  My first and only PET (full body) scan on October 10^th revealed numerous tumors in muscle tissue, bladder, bones, lungs, lymph nodes, and joints.  My next brain MRI and PET scan will be January 8, 2013.  I intended not to update the blog until after these scans, because we will not know with certainty until then the tumor status.  However, I thought an interim update might be helpful –especially since I have some encouraging news.

Within three days of taking Zelboraf, my chemotherapy prescription,  I began to notice the shrinking of the large tumors in my back and leg.  After a week, the largest tumor in my back was imperceptible.  Zelboraf has some dangerous potential side effects, so I have been in twice for checkups on side effects.  During these visits, my blood was measured for Lactate Dehydrogenase (LDH).  Tissue breakdown releases LDH, and therefore LDH can be measured as a surrogate for tissue breakdown.  A normal person has an LDH reading between 100 and 250.  On October 17^th my LDH was 607.  On November 6^th (one week on Zelforab) my LDH was 298.  On November 14, my LDH was 205.  This is truly great news as it indicates that Zelboraf is working as hoped.  Another blessing is that, while I've experienced some side effects,  I've not experienced those that would require me to stop taking the drug.

For the benefit of friends and family that are not local, I've attached a current photo the illustrates the only two outwardly visible side effects (hair loss and skin rash) that I've experienced so far.

I continue to attend work every day and remain convinced that it is the prayers and positive thoughts of friends and family that gives me such energy.

Regards,
Mark

October 26th - Breaking Some Rules

When my friend, Hal Christensen, proposed creating this blog as a sort of clearinghouse of information about my status with aggressively growing melanoma tumors I said it was a great idea provided he keep it brief, keep it as positive as possible, and don’t let it become a memorial

I'm about to break the first two rules, but for a purpose.

I do this as a tip of the hat to my friends who are praying for me.  As I've said, it’s enabled me to attend work.  But now, it has worked on circumstance.  I’ve learned a lot about evangelicals in the last weeks.  They don’t pray solo or in families.  They recruit their entire congregation.  Baptist buddies get their congregation to send cards listing all their names.  I have emails, voicemails, and cards from friends telling me I'm on the prayer list for their church.  I knew to expect great support from my Mormon friends, and the additional support from other faiths has been touching. 

Back to my story.  Each weekday I have radiation with technicians.  Once each week I meet with the radiation MD.  Wednesday the radiation MD said “You’ve lost 5% of your body weight in one week. [10% over three weeks.] You need to start gaining weight.”

Mark    “I have no appetite, dry mouth, and nausea.”

MD      “What nausea medication are you taking.”

Mark    “I don’t know the name.  It was prescribed by the surgeon two weeks ago.  I will call you with the name.”

I left a message later with the name, ate a big dinner, and lost it all by 9 PM.

I awakened hungry at 2 AM Thursday and ate tangerines and yogurt.  It all came up before leaving for work in the morning.

I took my nausea medication to my radiation appointment, left it with the nurse, and asked her to track down the MD and get an alternate prescription while I was in radiation.  After my treatment, the nurse said she had conveyed the prescription and they would get back to me. 

I got back to work and drank my usual 32-ounce anti-cancer green smoothie.  When my nausea hits, it is immediate. This time it hit during a speaker-phone call.  After the cleanup, I left for home quite discouraged.

On the drive home, I called my brother, an MD, and a close friend, a dentist,, and asked them both to bring me alternate nausea prescriptions Thursday night. 

When I pulled into our driveway, I saw a car out front and thought we might have guests.  Feeling too fragile to chat, I went up the back stairs to go straight to my bed.  As I passed our entry, I heard Porter, my son, say “Thank you Brother Whipple!”.  I quickly called Porter “Was that Gary Whipple?”  “Yes.” he said.  “Please go ask him to come back.”  Porter ran down the street in bare feet to bring Gary back. 

Gary is a friend from church that I only see every few weeks.  But Gary is the only Radiation Oncologist I know personally.  He is the one person who “happened” to come by my house at the very instant I desperately needed his specialized advice.

Within five minutes, Gary said, “Mark, no alternative nausea medication will help you.  Your brain is swollen from radiation.  In some, brain swelling triggers vomiting.  I will prescribe a steroid for you and you tell your attending Radiation MD what I've done.”

Within an hour I had taken the steroid.  In the past 22-hours I've packed down five calorie-laden meals without losing any.  I disclosed the steroid use today at radiation and they encouraged me to keep taking as needed.

My secular friends will see this series of events as a happy coincidence that (a) the one person I know personally equipped to help me, (b) happened to think the Sykes might like some ice cream, and (c) chanced to be within earshot during a 30-second window when I might have heard his name.  I hope my praying friends will take this as a confirmation to keep praying.

Sykes Family Fall 2012

Camping in Utah's Uinta Mountains

This past Fridaay and Saturday, Mark his sons went camping in the beautiful Unita mountains. All had a wonderful time. The weather was chilly at night but warmed up during the day making for a delightful Indian Summer.

Tuesday Oct 23

A message from MarK:

I'm convinced the many prayers and positive thoughts on my behalf have made it possible for me to keep working.

The least troublesome, but most apparent, recent change has been hair loss from radiation. 

Meg was smart to get a family photo before it came out.

I'm grateful for great friends, family, and caregivers.
Mark

Message from Mark's brother Scott

Mark and Meg had the first outpatient appointment with Dr. Kenneth Grossman, his main melanoma specialist, last week.  He got good news that his tumor cells have been identified to have the BRAF mutation, which is good because there are some promising treatments available for this type of melanoma.  Here are a few of the things learned and upcoming plans:

·         “Targeted therapy,” a type of oral chemotherapy

o   Works for many patients with BRAF melanoma.  Often melts the tumors away in just a few weeks

o   When it works, it tends to work great but has a limited time effect of average 7 months, which gives time for other treatments to work

o   Doesn’t get into brain tissue well, so still needs radiation to stop brain tumor growth

o   Mark will start this in a little over a week (one week after finishing brain radiation)

·         “Immune therapy,” a type of intravenous chemotherapy

o   Works for some patients with BRAF melanoma. 

o   Targets T lymphocytes to help them recognize tumor cells as foreigners and kill them.

o   Takes a few months to work, but when it works it has an effect for many months to years

o   Given once a week for four weeks

o   Mark will start this in several weeks

·         Radiation

o   Will continue on brain for this week.

o   Will be done on hip in this week also

o   May be done to specific tumors in the future if chemo meds work but at some time a localized tumor recurs

·         PET scan

o   Did not reveal a primary tumor.  Presumably the primary tumor was resorbed by the body

o   Will be repeated periodically to monitor for success of medications reducing tumor size and number

·         Family Risk

o   No blood relatives should have increased risk of melanoma.  

 Thanks for your continued prayers!

 Scott