The ‘four horseman’ as I’ve come to call them (fatigue, no appetite, nausea and diarrhea) have reared their ugly heads again over the past week. The appetite is most concerning because when you have no desire to eat, forcing yourself is not an option. The result is I have lost another 5 pounds and at times I am having a hard time finding anything I can eat. Bless my wife for her patience, this is very difficult and stressful on her.

I am going to keep on fighting, at least through my April appointment in Boston. After that we will have to see what options are available and if continuing the trial is still manageable.

There is however a fellow participant in the XL-184 trial that has decided to end his participation. Though his overall bone tumors were significantly less than mine, his scans never showed a real decrease or reaction to the medication. His last scans actually showed a slight increase in tumor size. The results of the scans, coupled with impact of the four horseman on him personally have forced him to seek other treatments.

Like I mentioned, I too might join him come April, we’ll see how things go.

Perhaps the worst of the current side effects I am dealing with is diarrhea. Admittedly a subject no one likes to talk about and I’m sure most of you don’t want to read about.

I’ve been dealing with this for almost two months. Like the other symptoms (fatigue, nausea and loss of appetite), this comes and goes each week. I am never ‘regular’ but have days where I am close to it. However, far out weighing that are days like today where my stomach rumbles all day, and the result is not fun.

It’s a subject I have debated sharing and decided that since I share nearly everything else here, I’d share this as well. It’s really draining me and has got to be the main reason for the weight loss. Week after week of this is becoming grueling. I think I am more aware of the overall impact over the past two weeks because the other symptoms have otherwise been much better. Less fatigue, I gained a few pounds and am eating better. Only slightly, but a little better. These changes have allowed me to go in the office for over a week straight and counting.

Now, if I could just get this other problem under control, life would be grand.

Yesterday, I flew up here to Boston in order to have updated CT and bone scans. Both procedures were uneventful, except once again, the CT fluid acted like a barium enema. I’ll leave it at that. Needless to say, my afternoon in the hotel room pretty much sucked.
Last night it was pouring down rain, so I just went to an Italian restaurant connected to the hotel and picked up dinner to go. Between not being in my own bed and the residual effects of 150mg of Prednisone, I slept like a baby, with colic! The good news is my appointment was not until 1:00 PM, so  I was able to sleep a little later this morning to make up for my lost sleep.

I ran into my friend Ralph from New Jersey. It was nice to see a familiar face and catch up with him.  He is in the same trial, and currently on the same dose (75mg). He is also
experiencing the same side effects as me,: lack of appetite, nausea, diarrhea, etc.
We’ll touch base later this week to compare the outcomes of both our appointments.

I went over everything in detail with Dr. S and he recommended we change to a lower dose (50mg). I told him I’d like to see the bone scan first. When we compared yesterday’s scans to those taken in August, it was incredible to see the contrast and a relief to be able to see how much the tumors have gone down. Even comparing the scans to those just taken 9 weeks ago, there were very noticeable reductions. Some of the reporting from the pharmaceutical company lags behind but what they did have showed a 42% overall reduction from Aug thru the November scans. After yesterday’s it might be 50%. After seeing these, we agreed to lower the dose to 50mg. The doctor was very certain all the side effects would lesson by doing so.

I return to Boston again in 6 weeks just for an appointment to meet with the doctor, and then 6 weeks later I will return for the same routine as this week to have updated scans.

There was snow on the ground when I arrived yesterday. Right now it’s 55 degrees and
sunny! Somebody sang ‘Life is good today’, and I agree – it sure is.

I was going to add an end of year post about all the things that happened in 2011, then I decided it is all documented within the blog already. I also decided against it because frankly 2011 kind of sucked. Sorry, I have no polite way to say how I feel about the last twelve months.

This post however is about looking ahead to 2012. The last two weeks have brought further improvement to the fatigue and nausea I have been fighting. Things are not 100% but they sure are better. I just need my appetite to return to normal so hopefully I can put on some of the weight I lost. I was able to walk with the disc golf crew both Wednesday and this morning and that felt wonderful both physically and mentally.

I want to keep this short so in closing I wish each of you a happy and blessed 2012!

As Brad and I prepare for our Christmas celebration, we would like to share with you our appreciation and dedication to David.  Our seven year journey since David was diagnosed with advanced prostate cancer has taken us on an emotional roller coaster ride, but more importantly, it has allowed us to grow closer to each other and we have learned to appreciate each day.

Starting the FLHW foundation was solely due to David’s vision and his desire to make a difference in the prostate cancer community.  As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF).  Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David’s disease. Ultimately, what PCF did for us was to give us hope.  One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.

Enclosed below is a link to PCF’s annual report.  David’s story is featured amongst several other PC survivors.

http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm

Brad and I are very proud of David’s positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.

We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.

God Bless,
Mary & Brad

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!

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.

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.