XL 184

Too short

Advanced Prostate Cancer, David Emerson, PCa, XL 184 -

It’s been a heck of a month, and yet a week remains!

One of our prostate cancer brethren, Terence in Seattle, started chemo. His second treatment is in a few days and so far things are going well. Please understand that much like myself, Terence is dealing with bone tumors and pain, raising psa and other PCa related issues.  His pain was excruciating and the good news is, he has seen some relief there is just a few weeks.  I hope the future brings Terence more relief and many, many years of peace and happiness with Sheri and the grand kids.

In early October I added a post regarding our golf tournament (Lucky number 7). The gentleman to my right in the first photo is Bruce. Bruce and I have known each other since high school, well over thirty years. After a while, life took us separate ways, so it was great when Bruce drove in from St Louis to play in the tournament and have dinner with Mary and I.  Two weeks ago Bruce went to his doctor to  have a few things checked out. That appointment led to a triple by pass two days later.  Bruce has children under ten years old, so that adds to the complexity of the recovery process. I wish Bruce and Lisa peace and joy as they follow their journey down the road to recovery.

I have another good friend Bill ,whom I’ve know since I used to kick his butt in first grade math flash card wars! He’s to my left in the photo from this post (Golf 2010). It turns out last week Bill had his own heart scare. The incident happened while he was traveling to St Louis on business and required an overnight stay in the hospital and a battery of testing. Fortunately, the results were negative and his heart appears to be functioning very well.  But it certainly created a stressful 36 hours of concern! Bill has three beautiful daughters. Bill, his wife Enid and all three girls are always in my prayers.

These are just three things going on in my life that have nothing to do with my own battle. There are others I could add, and many, many of you, the readers are expericing similar events yourselves. I share these as a reminder of the how fragile life is and as a way to ask you slow down around the holidays next week and next month. Enjoy time with your family and friends…life is too short.

Where are you going?

Advanced Prostate Cancer, Boston, David Emerson, XL 184 -
On my way to Boston, I obviously had a lot on my mind. This is what I wrote on the plane yesterday morning:
When traveling and someone asks, “Where are you going?”, I simply want to reply, “Nowhere, I’m here for quite some time, if I have anything to say about it.”. These last seven years have included so many ups and downs, twists and turns, I have become somewhat immune to emotions, the negativity, and times immune to the seriousness of the ramifications.
I just carry on until the next set back. Bad news? I just regroup, lay out a new plan or adjust the current one. The point is, I move forward at a slow steady pace. I’m not 100 percent sure what actually will happen three hours from now. My instincts tell me that today my medication will be increased, but who actually knows.
A day later, today I have a bit more to be optimistic about. Yes the dosage of Cabozantinib (XL-184) was increased (from 25 mg to 125 mg). I took my first dose of the increased quantity yesterday afternoon and my second this morning. Last night I slept better than I had in weeks. It might have been exhaustion, it might have been psychological based on a feeling of relief, having hope that the new dosage will be effective and I will be able to resume to a better quality of life with less pain and less fatigue.  Whatever it was, it was great. I woke up this morning and realized I hadn’t had in pain medication in twelve hours. That too was a first in several several weeks.
The doctor appointment fell right in the middle of my schedule for pain medications and I needed to have an empty stomach so I could take the first dose of the XL-184 while at the doctors office. Additionally, I had to wait nearly two hours for the new trial drugs to be delivered from the pharmacy. Consequently, I was four hours late taking the pain pills. I swear I could feel them working within 10 minutes as I rode the subway back to the airport. My flight back to Kansas City was direct but better than that, Mary and Brad were waiting to drive me home! That was the perfect way to finish a very long day.

The side effects that are most concerning are excessive exhaustion and complete loss of appetite. These are supposed to surface within 24 to 72 hours, if at all.  I remain optimistic, as patients in previous phases of the trial have found it to be generally very well tolerated.

My next trip to Boston is not for three weeks, in the mean time….. I’m not going anywhere!

Condition and recognition

435 South, Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -

I have spent most evenings over the past week trying to get the timing of Advil and Percocet down to a science. I haven’t earned a masters degree yet. Some days and nights have been fine, with very little to no daytime pain and decent enough sleep. There have been days of heavy fatigue and nights of tossing and turning and what amounts to maybe 3-4 hours of good sleep. Sleep on these nights comes in fits and starts which in turn leads to fatigue the following day.

My return trip to Boston can not come soon enough! I will be back for my next appointment in Boston on Tuesday. We anticipate the doctor will  request my dosage be increased and we are hopeful that the new dose will offer me relief from the pain and attack those tumors in my bones that are causing me discomfort.

On another note, you may remember this story from earlier this summer.
http://www.435southmag.com/recentposts/2011/10/14/the-buddy-system/

I received word earlier this week that the writer, Kimberly Winter Stern, has been recognized for the article. The High Plains Division of the American Cancer Society recognized her for excellence in journalism. 

Here is the link, scroll down to the ‘Magazine’ catagory:
http://www.cancer.org/MyACS/HighPlainsHawaiiPacific/AreaHighlights/high-plains-media-awards-winners

Kimberly, I think I can speak for John when I say thank you for capturing the story in such a perfect way and for sharing in our passion for finding a cure for prostate cancer.

From the far corners

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -

As I leave for my six week check up in Boston I can feel the strength of so many of my friends and family. I also feel the support from a distance. Recently I have received quite a few emails and blog comments from locations far, far away.

Previously I wrote about a young man from Uruguay who wrote me just days after his father passed. His kind words touched me very deeply and emotionally.

I have also quoted Ivan from Australia. He has become like an old pen pal, back before computers and email. I so look forward to his emails. His prose is beautiful, encouraging and truely from the heart.

Then there was a note from Naples, Italy. Raffaele, only 24 years old, who wrote to say how much enjoyment he and his family found in my blog. I was once again dumbfounded at the reach of this journal.

Most recently I exchanged messages with Melvyn from England. His words helped in ways I cannot express.
“I think it is harder for our loved ones and don’t know how my wife copes. You have your disc golf and I have my horse – I do my thinking and a lot of praying whilst riding the quiet English countryside and thank the Lord for the blessings He has given me in life so far.”
What a beautiful picture he painted for me as I anticipate the results of blood work and bone scans, to be riding a horse through the English countryside!

Focus, from another continent

Advanced Prostate Cancer, David Emerson, FLHW, XL 184 -

In my mind I have been contemplating several variations of this post for a few weeks. I received a note from a friend and in it this person referred to me as a hero. At first I wanted to grab a keyboard and proclaim “I am no hero”. For whatever reason, I just want to share, and hopefully benefit others with the my life experience. I don’t think I can carry the weight of that label. This clearly was not their intention, but those four letters stuck with me.

Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.


Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.

I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
 
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading

I cried, seriously. Perhaps it’s the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.

I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I’m just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.

DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:

Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen. 

The starting gun

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -
On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.
There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival,  45 minutes on the bus/subway and I promptly walked into the doctor’s office.

Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).

The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.

The highlights, or low lights in this case, are as follows:

  • –       Extensive areas in upper to lower mid spine (much more than before)
  • –       Left lower femur shows a rather large new spot
  • –       Right shoulder and collar bone show new areas of growth
  • –       Upper right ribs show quite a bit of new growth
  • –       Several small areas on the vertebrae between shoulders and base of skull.
       These were the most concerning to me.

I ask you to let that sink in for a minute and perhaps re-read it.

 
The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness  responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11th.

After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time.  Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason – thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!

It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!

Come On Irene!!

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -

Not the 80’s classic by Dexy’s Midnight Runners, but the Hurricane!

I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.

Though it looks like she’ll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.

Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can’t get here soon enough!

In Like Flynn

Advanced Prostate Cancer, Cabozantinib, David Emerson, XL 184 -
Before the update, I was curious about the origin of the expression I used in the title, so I Googled it.
“The earliest known use of “in like Flynn” in print is in the December 1946 issue of American Speech. Penn State prof Ed Miller reported that students of his who had served in the army / air force during World War II used the expression to mean, “‘Everything is OK.’ In other words, the pilot is having no more trouble than Errol Flynn has in his cinematic feats.”
Now, on with the show. It’s 100%, I’m in the Cabozantinib (XL-184) trial and I can start to take the pill on August 30th. Relieved? Of course we are, but it really won’t sink in until I have pills in hand and take the first dose! The travel will be a little taxing on us, but again, I can go round trip in one day, and so far it appears as though the flight will cost around $200 each trip. The subway goes from the airport to within 25 yards of the hospital so no ZipCar will be required. I hope the time on the ground allows me to see a little bit of Boston and perhaps coordinate trips with a few friends for dinner, etc. I’m really looking forward to the new chapter in the journey.

Tomorrow I will see my local Oncologist for my monthly check up and a few shots. I’m not expecting my PSA to be anything but be slightly higher. This is based on the fact that I will have been off Zytiga for 10 days. Though I had a stretch of 8-9 days without Advil or pain pills, I did have to start taking Advil again on Tuesday. I’m only having to take 3 Advil every 12 hours and am thankful it has not progressed further. As I stated before, the time between now and when I start to take the new meds on the 30th may be a challenge psychologically, but we’ll get through it, and hope for a good response to the new treatment!

Back in the saddle again.

Advanced Prostate Cancer, Cabozantinib, David Emerson, disc golf, XL 184 -

Tomorrow we hope to get the ‘official’ word about my acceptance in the Cabozantinib (XL-184) clinical trial. In the first week since I stopped taking some of my previous medications I can’t tell any difference. If anything, I feel a little better.

I mention feeling a little better with a slight amount of hesitation. Although we received mixed opinions from the medical community, Mary and I are convinced that my recent bouts of pain are related to the two new drugs I started in June. 

The only proof we have is the pattern of the pain I experienced both times I received the treatments. Five days after the injections I begin to have back pain. The severity and location move around from low to high and side to side. Sometimes it feels likes it’s my ribs, then my back, etc. It lasts between seven to ten days following the injections and then I have days and days of ‘normal’ activity. 

This past weekend was one of those ‘normal’ periods. I was even able to play disc golf on Sunday, and played pretty well considering I had not played in a month. I really miss playing twice every weekend but I’m not complaining, I’ll take what I can get.

Three weeks and counting, I hope it flies by like summer did!

My Neverland

Boston, chemotherapy, David Emerson, Neverland, radiation, XL 184 -

This morning I watched ‘Finding Neverland’, the story of James Barrie who wrote Neverland (Peter Pan). Based on the crocodile tears, this one hit a wee bit close to home. I don’t mind sharing that fact. Yes, I cry during a good, emotional movie. For those of you that have been around here for awhile, you know that I have been known to cry while reading a book! There was just something about the story, it is a great movie I would recommend to all.

Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.

With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.

I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.

I’ll provide more details once we return from Boston.