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Monday, October 29, 2012

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.

Wednesday, October 24, 2012

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
 

Monday, October 22, 2012

Oct 18 - Mark's Dad Dwane

      This afternoon I went in with Mark for his radiation at Huntsman Cancer Hosp.   He also had some more scans taken after his radiation afterward  today.  Mark said that the scans from last week did NOT reveal the point of where the  melonima point entered his body, as hoped for; but it did reveal several new, additional tumors through out his entire body, including left leg, body core, armpits, etc.  On Tue. they are going to also start radiation treatments on a small tumor in his right hip joint, because of its potential damage to the hip.  Mark is slightly using a cane, as he's still bothered by the incision for rod implant in his right leg.
     I am going in with Mark again tomorrow 8:30 a.m. for his radiation, after which we are going directly up into the Unita Mountains together with Scott for the weekend at Scotts property and trailer.
Dad

Thursday, October 11, 2012

October 11th



 From Mark:
As you know, tonight (Wed. 10/10) will mark one week since I got my diagnosis and much has happened since my weekend email.
Many people are praying for me and I felt energetic early in the week as a consequence.  Monday I spent the day at Huntsman Cancer Hospital (HCH).  In the morning they prepared me for brain radiation.  This was considerably more time consuming than I had imagined.  It is important that your head be in exactly the same place each radiation session (every weekday for three weeks).  They accomplish this by making a brain radiation mask (photo attached) that clips to the table each day.  The mask begins as a sheet of hot plastic that is formed to your face as it cools.  They also placed seven tattoos on my body creating sort of cross-hairs over tumor in my femur that will be receiving radiation.  I then had my radiation session later Monday and again Tuesday. 
The orthopedic oncologist, Kevin Jones, decided the location of the tumor in my femur caused a high risk of impending fracture and ordered surgery for Tuesday to install ~20” metal rod.  The surgery was successful (see attached X-rays) and I stayed overnight for observation and because I finally had my PET Scan on Wednesday.  Until now I've only had a thigh, pelvis, and brain scan, but we haven’t identified all tumors or found the “primary” (the origin source of the melanoma).  This is important because the treatment varies based upon the strain of melanoma and the fastest way to identify the strain is by finding the primary.  The PET scan is a whole-body scan that requires a glucose solution in the blood that excites the tumors and makes them highly visible.  I had been anxious to get this scan done so all the tumors could be identified and possibly the primary found.  This occurred Wednesday, 10/10/12, but I will not have results for a week.  The delay isn’t problematic because I'm told we can’t treat body tumors (oral medication), at the same time we treat brain tumors (radiation).  Treating brain tumors must take precedence.
I had many terrific visitors to HCH and was blessed with permission to go home Wednesday.  For the next few weeks it should be a more predictable schedule as I receive daily radiation, heal from surgery, and have a few follow-up MD appointments.  I will let you know when I know if I am BRAF positive or negative.  I expect to learn this on from my oncology attending physician, Dr. Kenneth Grossman, on 10/17 at 8:00 AM.   In the event he calls me to say the PET scan revealed the primary and they need to extract is, I will also let you know.

Mark's radiation mask:


Rod in Mark's Femur




Oct 10th

Mark had a 12-14 inch rod put in his right femur and attached to his hip socket. He is recovering quickly. Able to bear weight on it this afternoon and came home from the hospital. Mark was getting around well this evening with a little help from crutches.

This evening the 20th ward teachers quorum brought overbig smiles, well wishes and large plates full of goodies for Mark. The Sykes were thrilled.

Mark and Meg greatly appreciate all of the calls, emails and texts. The outpouring of support has been so wonderful and so greatly appreciated. With all of the time in treatment, plus spending time at work, and with the family, Mark and Meg are having a hard time responding to all the kind and loving messages. We think it would be helpful to utilize this blog to get updates of Mark and to leave comments or questions for Mark and Meg to respond to.

Thanks to all for your love and support.

Tuesday, October 9, 2012

Oct 9 10pm Update

Just spoke with Meg and Mark came through the surgery to put the rod in his femur very well. He had his second brain radiation treatment and that went very well also. Mark and Meg appreciate your thoughts and prayers.

October 9, 2012 Update

October 9:
On Monday Mark was fitted for a radiation mask in preparation for radiation treatment to reduce the size of tumors in his brain. This radiation treatment began Tuesday morning. Mark underwent surgery in his hip to have a rod put in his femur. A large tumor had weakened the bone and required a rod to prevent a spontaneous fracture. Mark is expected to be in the hospital 1-2 days recovering from this surgery.  Mark is scheduled on Wednesday morning to have a Pet-CT Scan that will illuminate all the tumors in his body. The scan is expected to take 3-4 hours. This will help the oncologists determine the extent of the tumors and aid in the development of the optimal treatment for the tumors.

Several friends have asked about visiting Mark. Mark anticipates being able receive visitors on Wednesday afternoon. Mark is at the Huntsman Cancer Center in Salt Lake City. Those wishing to visit are requested to check this blog for an update on Mark being able to receive visitors or contact Hal Christensen at hal@christenseninc.com text or call him at 801-557-2188.

Mark and Meg greatly appreciate the outpouring of love and support. Hal has passed on the messages of love and support from phone calls and email he has received for Mark and Meg.

From Mark on Sunday, October 7, 2012
.   On Sunday, September 16 I noticed a lump in an area of my back that had been sore.  This, combined with a few other symptoms prompted me to make an MD appointment for Thursday, 9/20 with a family friend, Dr. Dave Vandemerwe.  Dave called me the next day and said blood tests showed low iron and protein.  He set up body scans for Friday, 9/28 of the two areas where I had the most discomfort—my lower back and right thigh. 
Dr. Vandemerwe called me Monday evening, 10/1, and said I had numerous tumors in the two areas scanned.  The largest he compared to a football in shape 20cm long x 9cm wide x 5cm thick on my thigh.  My pelvic area has an unspecified number of tumors also, the largest being about a softball size that prompted my original appointment. 
On Thursday evening, 10/4 I received a diagnosis of malignant melanoma and checked in to Huntsman Cancer Institute.   On Friday morning I met with Dr. Grossman, a melanoma specialist, and his team.  He let me know that I have stage 4 melanoma.   The average life expectancy is 18-months, unless I also have tumors in the brain, in which case it is shorter.  He scheduled some other tests which revealed that I may need a steel rod in my femur, as a tumor has weakened it, and exposed 7-8 tumors in my brain.  He released me for the weekend, which I've spent with family.  I begin radiation for the brain tumors tomorrow, and, I hope, for the femur tumor also.  The other tumors treatment protocol is unknown until more tests are done to determine if they are BRAF negative or positive.
If you wish an update, I may be difficult to reach.  Meg (801-510-9321) is a good source when the children are in school.  My brother, Scott, attends some of my appointments and is a good family source for status.  Our great friend, neighbor, and home teacher, Hal Christensen (801-557-2188) has offered to take calls from anyone.  I have a Facebook profile, but never used it.  Perhaps I will have one of my children teach me.
This has all developed rather quickly.  I received the diagnosis Thursday night and was admitted to the hospital immediately.  I didn’t reach my siblings or parents until Saturday.  We haven’t even had time to research the disease.  The medical team, however, inspires confidence in their skill.  Besides treatment, Meg and I are mainly concerned about keeping our children feeling secure and positive.  We believe that the more normal life can remain, the more secure they will feel.
Your prayers have strengthened us and we deeply appreciate them.
Thank you,
Mark

Monday, October 8, 2012