January 5, 2015 Update

Mark had CT scans of his pelvis and chest on January 5, 2015
Of his nine tumors in this area, most have decreased in size by an average of 15%.
The largest tumor, was 7.9 cm on 10/16/14 and has shrunk to 5.2 cm on 1/5/15
In late January he will have a brain MRI.  Listed below are the tumors identified on the last scan.
Mark is ever grateful for your prayers on his behalf.

Adrenal left

Adrenal right

Kidney

Bowel

Mesentary Mesentary

Mesentary

Nodes Lungs

Lungs

Mark Sykes Health Status Update 10/30/14

Mark again thanks everyone for their thoughts and prayers on his behalf as he continues to fight his cancer.  He has finished radiation for his adrenal gland tumor and will be shifting medications in a few days to try to shrink all remaining tumors since a few have grown a bit in his lung and bowels.  The bowel tumors caused some partial obstruction a week or two ago but that cleared up without requiring any surgery.  The new medication, debrafanib, will be an oral pill similar to the one he took a couple of years ago (that long ago!) which melted most of his tumors away and hopefully will do the same now.
 It will take eight weeks to see a response to the debrafanib, so he will get updated scans around Christmas.  As the tumors break up and enter the body’s clean up system, hopefully his immune system will recognize the pieces as foreign and start fighting the melanoma cells more effectively.  This “vaccine effect,” in concert with the IV medications he has received and may receive again, will hopefully help prevent new tumor cells from growing.

 Ever the warrior, Mark keeps a great attitude and continues to go to work every day. Meg keeps him going with her positive attitude and faith, as well as her special green shakes. Thanks for your support!
Scott Sykes

Right Adrenal Tumor Radiation session 2 of 5 sessions

Update 10/5/2014

Mark continues to be tremendously blessed—thanks for your prayers and support. It has been some time since the last blog update, largely because there has been little to report. He has continued to feel reasonably well and has continued to carry on with life in his usual fashion—working and playing hard. As you probably know, he successfully completed the 206 mile Logan to Jackson bike race, something unheard of for someone fighting stage 4 cancer.
Mark’s most recent scans showed stability in most of his tumors, regression in some, and mild enlargement of a couple. He has a tumor that has grown in his adrenal gland, so in the next few weeks he will receive radiation treatments to this tumor which should stop its growth. He will continue to receive his monthly IV anti-melanoma infusion which incidentally was recently approved by the FDA as it was shown to be a successful medication, so it is no longer considered experimental.
Thank you for your ongoing prayers and thoughtful gestures to Mark and his family.

Scott Sykes

Lotoja

by Mark Sykes

edited by Diane Sykes Bartholomew

September 10, 2014

I've got a red blood spot on my eye from LoToJa.  Does anyone know a good ophthalmologist? 

I rode in LoToJa (a 200 mile bicycle race from Logan, Utah, to Jackson Hole, Wyoming) last Saturday.  My brother Scott supported me last year and promised to ride with me if I chose to attempt it this year.  I’ve felt weak since my brain surgery last December; I've also been taking a trial infusion drug that makes me tired and sluggish. Yet, all summer Scott and I met up three times a week in Chad Carson's basement for training.  We rode bike trainers hooked up to computers--Chad is quite scientific about his training, and he pushed us hard.

As LoToJa approached, I resolved to make the attempt, despite my weakened condition. Friday evening my mom, two of my sons (Bennion and Maxwell), and I travelled to Scott’s house. We inventoried our supplies and reviewed our strategies.  At 4:30 Saturday morning we made our final preparations and drove to Logan. With a pack of 50 riders, Scott and I crossed the starting line at 6:36.

This is my 5th LoToJa.  In the previous 4 races I rode effortlessly with the pack through the flat 35 mile section to Preston, Idaho (there are only two or three real hills in this section). But this year by the time we reached the first hill I had already fallen far behind the pack.  I simply wasn’t strong enough to keep up.  Scott came back and “pulled” for me (he rode in front of me at a pace I could maintain to create a draft for me to ride in).

We arrived at Preston 30 minutes behind my predicted schedule.  Mom, Bennion and Maxwell met us and replenished our drinks.  Over the next 30 miles we climbed 2,500 feet to the summit of Strawberry pass. Scott pushed me up the hill.  Literally, pushed me.  He rode on my right a few feet behind me with his left hand in the small of my back, pushing me so that I gained 1-2 mph.  When his left arm tired, he switched to the other side.  He continued this for the next 140 miles.

Chad had prepared a cocktail of pills for symptoms we would feel at different stages of the event.  At the base of  the steepest climb—the King of the Mountain--I vomited, thus losing all the nutrients of Chad's carefully calculated cocktail. At that point Scott silently ceded that we would not cross the finish line.

Scott's tire went flat within sight of Afton, Wyoming.  Fortuitously, a helpful WY highway trooper gave us a ride the remaining kilometer to town where we received refills--physically and emotionally---from Scott’s wife, Jen, and Scott changed his tube.

Between Afton and Alpine we fell in with a good group of riders and settled in to a nice rotation of pulls (I took no pulls but Scott and the others did). Among the riders we met a friendly fellow named Rhett.  He stayed with us for the 50-mile stretch from Afton to Hoback Junction.  Sometimes both Rhett and Scott pushed me at the same time.  Our two support vehicles manned by Bennion, Jen, Maxwell, and Mom leap-frogged us--stopping about every 5 miles to cheer us onward. 

We arrived at Hoback Junction at about 7:15 p.m. A sign at Hoback informed us that we still had 29 miles to the Finish. To finish by the 8:30 cut-off time would be impossible.  After a brief rest at Hoback, Rhett zoomed off to finish before 8:30, and Scott and I resumed our plodding pace.  As the sun set and the sky darkened Scott stopped to get headlamps out of the support vehicle and affix them to our helmets. I left my helmet with him and proceeded alone.

I continued riding for about five miles before Scott caught me.  He was surprised to see that I had no helmet and no light. Hadn't  Bennion brought it to me? Scott had attached a headlamp to my helmet and sent Bennion to deliver it to me. However, I had already taken a "racers only" turn, and Bennion couldn’t deliver the helmet.  Scott then removed his helmet and placed it on my head--he rode bare-headed for 10 or 15 miles in full dark.  We reached Wilson where the bike path merges with a highway.  Even though official race time was over, a LoToJa volunteer was still there flagging us in the direction we should go.  We rode on the shoulder of a busy highway for 2 or 3 miles. Scott rode behind me and directed his flashlight to illuminate the reflective material on my gear so I would be visible to drivers. When we turned a corner for the last six mile stretch to the finish we met up with Bennion and finally retrieved my helmet.

I was entirely spent by this time.  I had been on my bike pedaling for 14-hours.  I had been riding for several hours with my elbows locked because my triceps had failed me.  Now my right arm could not grip the handlebar.  Only if I stopped pedaling and stood on the pedal on my left leg could I use my back muscles to relieve the right arm—but then I wasn’t pedaling.  Scott pushed me the last few miles, with me alternating pedaling and resting.

We saw the Finish from over a mile away.  The race coordinators removed the timing strips at 8:30, but the finish line was still lit up at 9:00. We crossed the finish line 14½ hours after departing from Logan. Our support crews and several race volunteers welcomed us with much celebration.  We collected our “Finisher” medals and posed for photos at the finish line.

After Scott and Jen left to travel back home Mom, Bennion, Maxwell and I drove to a KOA campground where we had reserved a cabin for the night. As I reflected on the LoToJa experience I felt brimming with appreciation for a remarkable family, and most directly, for a phenomenal brother. Scott physically pushed me for more than 140 miles, at considerable expense to his knee from the added burden; he showed vast wisdom by concealing his doubts about our finishing; he sacrificed his safety by giving his protective helmet to his brother with stage IV cancer.

The next day, at Maxwell’s insistence, we stopped at Lava Hot Springs on the way home. That’s when I noticed a blood spot on my eye.

Which reminds me, does anyone know a good ophthalmologist?

PD1 cancer treatment trial

In the last week of June Mark started a clinical trial with a drug called PD1. He receives infusions every three weeks and will know if it is working after 12 weeks. Mark and his physician are very hopeful, especially given how well Mark has responded to other treatment regimens.

Christmas Update

Mark had brain surgery on Wednesday, December 18^th. The surgery went very well. The tumor in Mark’s brain, that the doctors thought was aggressive and growing, and warranted surgery, was black, shriveled, dead, and smaller than expected. Although it was no longer growing, it was causing Mark’s brain to swell and the surgeon successfully removed it. Mark is already feeling better.

 

Mark spent several days in the hospital, 

but as he predicted, returned to work on Monday, December 23^rd. Mark is very grateful for the prayers, phone calls, emails and other expressions of love and support. He sends his love and best wishes to all of you for a Merry Christmas and a happy and blessed 2014.

 

December 18th Update- Surgery Day

As you know, Mark has had a miraculous response to medications and radiation.  The mediation he received last summer activated his immune system to recognize the tumor cells as abnormal and therefore to attack and kill the tumor cells.  His followup brain and body scans have shown that most of the tumors in his body are completely gone or are much smaller. Two tumors, however, are growing, one beside his kidney and another in his brain.

After further MRI testing yesterday, the doctor feels that the brain tumor requires another round of focused brain radiation or surgical excision followed by focused brain radiation.  After considering the pros and cons, Mark and Meg have decided to proceed with surgical excision of the brain tumor on Thursday. Mark anticipates a quick recovery and plans to be kept in the hospital for only 3-4 days.  Subsequently, radiation will begin when the doctors feel appropriate, but this is done on an outpatient basis and causes little or no symptoms.

The tumor near the kidney will be treated with focused radiation after the brain tumor treatment has been completed.

Mark will be busy at work and with the necessary hospital pre-admission procedures until Saturday or Sunday. He expects to be in the office Monday of next week.

Mark and Meg are grateful for your continued prayers on his behalf.  He has felt the Spirit very strongly through this process and feels that everyone's prayers on his behalf have had a huge impact for good.

December 6th Update

I'm so grateful to still be here a year later.  I have felt, as has the family, you’re continued love and prayers. I can’t begin to express how much it has meant to me – thank you.  My PET scan showed minor tumor growth, nothing my immune system can’t handle, but one concerning tumor.  I'm scheduled for radiation on that tumor next week. 

My brain scan showed one tumor causing brain swelling.  Doctors Grossman, Shrieve, and Jensen want to perform another MRI on 12/24/13 with additional tests to determine how to treat it.  With the holidays coming up, I'm not certain when I will see the brain surgeon, Dr. Jensen, to interpret the results.

Good News!

Thank you for your prayers and support—it’s worked!

I had scans this week and learned that all four brain tumors are shrinking and my immune system is fighting body tumors. 

Dr. Grossman says there will be no treatments or appointments before my next scans the week of Thanksgiving. 

6/19/13 update

Brain radiation for four tumors was 6/17/13.  I've had no complications, returned to work6/18/13, and feel great.

Attached is a photo my sister, Diane Bartholomew, took of me in my radiation mask as the procedure began.

June 6th 2013 update

The scan results yesterday were not what I hoped for and expected.

I have been feeling much better recently—gaining enough energy to exercise regularly and having only minimal side effects to Yervoy.

Because of this, I fully expected to hear good news yesterday.

Regrettably, four of the brain tumors that were quite small on my 3/5/13 scan have now increased in size.  One of them has increased sufficiently to cause brain swelling.

These four tumors will be treated soon with targeted brain radiation (not whole-brain radiation like I had in Nov 2012).

There is also a new tumor in my left shoulder and right lung.  A tumor on my kidney has grown.  None of these tumors is perceptible to me (they aren’t painful as other have been).  These body scan results aren’t poor.  If not for the growth of brain tumors, the scans and Yervoy treatment could be deemed successful.

After the brain radiation, Dr. Grossman has three treatment ideas for the body tumors, including a possible return to Zelboraf.  Zelboraf is the drug that gave me the great initial response.

I'm grateful for your continued support and prayers.

March 9th 2013 update

I've been struggling with how to describe the road ahead. Thankfully, my brother Scott attended my most recent MD appointment and summarized it aptly below. Scott asked me how melanoma has changed things (besides the most obvious health affects). First, it brings focus to the moment. Instead of always striving for that future reward (e.g. promotion, possession, vacation), I enjoy the family sitting around the table laughing together, or the delicious electric blanket, or the vibrant sunset. Second, nothing goes unsaid. If a friend travels to visit, and he may not do so again, he lays it all out. Communication is direct, sincere, and precious. Third, you get to see the best of everyone. From acquaintances to long-time friends, all go out of their way to be generous and kind. I'm so grateful for your support. It is a blessing to me.
Mark
Mark Melanoma Update 6 March 2013

Mark continues to do extremely well with his chemotherapy treatment. His radiation side effects have mostly resolved, he is starting to grow beautifully white and fine hair, and the chemotherapy side effects are also improved. He is in virtually no pain and is able to work his 9+ hour workdays, although he is exhausted at the end of each day.

He met today with his melanoma doctor, Dr. Grossman, to review recent test results and to discuss changing his treatment regimen. The PET body scan and MRI brain scan showed that his tumors continue to respond well to the current chemotherapy, Zelboraf, but a few tumors show signs of possible resistance to this medication. Accordingly, the doctor has recommended stopping this medication and switching to an immune-therapy called Yervoy (ipilimumab).

Yervoy works in an entirely different way, and unlike the Zelboraf, holds the potential promise of long term survival, so switching at this time makes a lot of sense, after reducing the amount of tumors and making the tumors more accessible to the immune system with the prior chemotherapy. The Yervoy will be given intravenously on Wednesday, March 13 with an additional dose every 3 weeks for 4 doses total. If all goes well, the final dose will be May 22. Yervoy will help Mark’s own immune system recognize the melanoma cells and destroy them. The immune system will maintain a memory that will allow his own cells to continue to destroy any melanoma cells long after ceasing the Yervoy.

Side effects are generally mild and primarily are bowel related. Severe side effects are possible (10%) and are primarily bowel or endocrine (hormone) related.

The major downside with Yervoy is that only a minority of melanoma patients respond to the medication. In addition, it takes 12-22 weeks to know if his body is responding favorably to the medication, so this will be an anxious time of “waiting and watching.” Were he not to respond, he would be able to go back on the Zelboraf and potentially be treated with other medications still under investigation.

Mark feels strongly that his miraculous response to radiation and chemotherapy has been due to the prayers, fasting, and faith of the many loved ones concerned for him. He invites everyone to continue to exert themselves spiritually for the blessing that he will respond favorably to the Yervoy and receive a long term cure.

Love, Scott

My head and body rash has improved.  The photo of me with Bowen, my 15-year old, was taken one month after the previous photo and the photo of me in my office was taken last week.  The three photos, each about a month apart, show steady improvement in the head rash.

On March 5 I will have another PET Scan and an MRI.  Based upon the results of these scans, Dr. Grossman will decide if I should switch to an immune therapy drug, Ipilimumab, from my current chemotherapy drug, Zelboraf.

If I switch to the drug, and my body doesn’t reject it, it offers the best chance of long term success.  We are praying that Ipilimumab will work for me. http://en.wikipedia.org/wiki/Ipilimumab

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