David’s Blog

Thoughts from Gate A2

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Well the trip back and forth to Boston went like most, uneventful. Mary took me to the airport for the 7:00am flight and then it was just a quick subway ride to Mass General.

I talked with Dr. S about reducing my dosage and he was willing to do so, however, it came with the following stipulation: if we lowered the dose, we couldn’t later increase it if we needed to. He left it up to me, but his opinion was to maintain the 75 mg level since the bone pain has subsided so much. If the fatigue and nausea become any worse, he said to call ASAP.

While yesterday was one of the better days I’ve had in weeks, today was a drain from the start. As I write this I still have an hour before the flight boards and 90+ minutes before we depart. Though the flight home is direct, it still takes nearly four hours flying against the jet stream. I’ve never been able to sleep on planes, but tonight could be an exception. The nausea has been mild today and I have just been pushing through the fatigue all day.

The good news is my appointments in Boston have now changed from every 3 weeks to every 6 weeks. So long beantown until late January!

It better be working, I pray it is

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I haven’t posted in a while because I am still struggling with nausea and fatigue. Though these are known side effects of the XL-184, it doesn’t make dealing with them any easier. It is a constant, daily battle. I now have three different anti-nausea drugs and though they provide some relief, none of them is perfect. As for the fatigue, it has just become a recurring daily theme. Some days are good, others I spend a lot of time napping.

For now, I just have to fight through it until my next appointment in Boston. At that time I am really going to push for the doctor to lower the dose I am on to 50mg. I am not sure if the doctor will agree, but I plan on making a strong case. The nausea continues to cause weight loss (aprox. 23 lbs now) and the fatigue has just gone on too long.

Aside from these two wonderful challenges, we, like the rest of you, are trying to get ready for Christmas. I should correct that and state that Mary is trying to get us ready for Christmas. The house looks great and her shopping is well under way. This is one of my favorite times of the year and not being able to do much to help is really weighing on me. I want to do more to help decorate and shop, but as I mentioned above, it’s just not in the cards right now. On Sunday I helped Mary and Brad cover our patio furniture and helped Brad run the extension cords needed to run some Christmas light in the front of the house. That consisted of twenty, maybe thirty minutes of very light work and I was zapped and had to returned to the recliner to recover. I’ve read a number of ebooks and seen a lot of NFL football, but I want some semblance of normalcy to return to my life!

I’ll try to update the blog more frequently between now and the end of the year, God Bless you all.

November Review

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

After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!

I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn’t notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.

On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.

After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.

With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.

75mg may still be too high, I still have occasional nausea issues. I’ll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.

Happy Holidays everyone, peace be with you all!

This one stings

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Yesterday the prostate cancer community lost another warrior when Brian from New Zealand lost his battle.

Brian and Kim reached out to me right after his diagnosis and we stayed in touched regularly throughout his courageous battle.

Here is something Kim sent me almost three years ago to the day (11/28/08) “As you know it is one hell of a roller coaster ride -this prostate cancer. I’m just glad he is still here. It’s not an easy road when cancer comes into your life but..I guess if things were easy we would take everything for granted and never really understand and savor the special things in life.”

Brian, I never had the opportunity to meet you in person, but you were a brother for sure. Kim, words will never fill that void, but may the peace and grace of God be with you during this difficult time. You are in our thoughts and prayers. Brian will be missed.

When a Buck is worth millions

Advanced Prostate Cancer, black labs, David Emerson, XL 184 -

I’m alone in the house tonight, Mary and Brad are out running errands. I’m not real fond of being alone, in fact, I have grown to detest it. I don’t need a lot of conversation, just the simple presence of others, their nearness makes all the difference in the world.

I should clarify that I am never alone, he is always near to me. In this case, I am not making reference to God but to Buck. Buck is our 95 pound black lab. When we got him  in 2002 I was ‘in between” jobs, so back then I was with him 24×7. He was house broken with in a week. Labs are something else, the finest dog one can own.

This pictures is just a typical moment in my day with Buck. Nose on the bed for a few seconds as he checks to make sure I’m doing OK or if I need anything. He’s so lovable.

Thanks Buck, I’m good right now, I’ll let you know if I need anything.

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.

A brief update

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I realize it had been a few days since my last post and as soon as I posted my last, things went south again. I’m really tired and don’t have time for a day by day update so here is the cliff notes version:

The over the counter laxatives barely got me through the week. On Friday my local Oncologist phoned in something stronger, 14 hours later it started working. ‘Started working’ is a far cry from back to normal but we are getting there. Once I get my bowels back on track I can start dealing with the pain and then better sleep will come as well.

As for the trial medication, as of Thursday I restarted at a lower dose (75mg). Now I have to find patience to let it begin working.

My biggest concern is turning this around before my trip to Boston next week. On top of that we have plans to visit with family over the Thanksgiving holiday. Hoping at this point that I will be well enough to make the trip.

That’s all for now. I hope to make small amounts of progress each day,and I’ll do my best to make sure I write another update before too much time passes!

Tomorrow, is another day, a better day

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The previous four days were pretty horrible. As I’ve mentioned here before, I have been taking pain pills a few times a day to deal with back and hip pain. Though they have been doing a great job for me, one of the unfortunate side effects is constipation. I was doing a good job of keeping on top of this particular issue until last Friday. I realized what the issue was immediately but several different types of over the counter medications did not work. There are a number of side effects that can manifest, in my case, I developed severe pain in both kidneys.

By Saturday morning I also began having complications from the increased dosage of trial medication, excruciating nausea. I’m not talking a little tummy ache either. Given these two issues, I also wasn’t eating much at all.

I made it through the weekend (barely) and called the clinical trial nurse in Boston first thing on Monday. She told me to stop the medication for two days to allow the side effects to clear up and she would call back on Wednesday with instructions on a lower dose.

By chance, Monday was my monthly appointment with my Oncologist. While there I was given 2 liters of saline solution to help me avoid dehydratrion, along with two types of anti-nausea medication. I was hoping for instant relief, but the nausea didn’t subside until around 10pm.

As bad as all this may seem, it causes me to resort to a cliche, ‘tomorrow is another day’, and today was just that, another day, a better day. The nausea is all but gone, the pipes are working better and I was able to eat both breakfast and lunch so far.

Once again, in the midst of my chaotic life, prayers and determination get me through another lap on the roller coaster.

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.

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