Same ol' song and dance, my friends

Last week I made my scheduled trip to Boston. I departed Kansas City with a forecast calling for 70 degrees and landed in Boston to a chilly 27 degrees. It was just someone’s way of reminding me that it’s not quite spring!

 

This trip to Boston did not include scans, so it was a roundtrip, one day schedule.  The meeting with the doctor was quick but full of good news.  He had the official Radiologist report from the pharmaceutical company (Exelixis) and they reported the when comparing my baseline scans from August to my most recent scans from late January, the overall reduction in my bone tumors was 95%! Seriously! So refreshing to receive good news! Although managing the side effects of this treatment have been a challenge and definitely impacted our quality of life, we know that ultimately the treatment is combatting the cancer, so it is all good.

This means for now, we just keep headed down this path to see how long we can make this last. For now, I won't return until mid-April and with that appointment I will have scans again. As long as we see at least stability on those scans, we move forward.

The rest of  the week was up and down emotionally. Our young friend passed away, the funeral was wonderful, but I could not talk to her husband. When I opened my mouth, I just wanted to cry. He said he felt the same way. Fortunatley Mary was there to keep it together. We continue to pray for him and his young son, who is truly an awesome young man.

In additional to that, we continue to pray for one of the long time contributors to the 'advancedprostatecancer' group at Yahoo Groups. I mentioned John A. here in my last post. He had a bad few days, but is still going strong.

Thursday night my brother Doug called and asked if he and his wife could come up to visit. It was fun! We watched a lot of college basketball, cooked and ate too much! So enjoyed their company!

The weather this week is calling for over seventy degrees every day! After work walks with Mary will be in order every evening! It is enlightening to have Spring at our door!

Where are you going?

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

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

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!

A Capital affair

On Tuesday the 20th, I left for my visit to Boston at 4:30am. Though this was my first check-up after starting the latest clinical trial, it was just a check-up and only standard blood tests were run. I won't  get a view of my scans until I return on October 11th. The Boston leg of the trip and the visit with the doctor were non-eventful.  When I finished I was then off to Washington, DC for 'The Summit to End Prostate Cancer". I attended the same event last year, but was more excited to return in 2011.
Aside from the opportunity to meet and speak with our elected officials (Kansas Senator Pat Roberts),

I was also anxious to finally get to meet in person a few on-line friends that I have know for years.
First was Tony from Las Vegas. We were diagnosed around the same time. He initially contacted me via email, but over the years we have talked on the phone, instant message and of course Facebook. He's a great guy and a wonderful champion for our cause. I hope the people in Las Vegas realize what a resource they have in him!

Finally I visited with Sherry G. from New Mexico. She lost her son to prostate cancer when he was only 36. Sherry, much like Tony, is an outspoken advocate for all men. Not just those fighting the disease but also those men that should be and need to be screened.

Though tiring, it was a wonderful three days in Washington, DC. To Congressman Yoder and Sentors Roberts and Moran - please do your part and continue to fund cancer, and more specifically prostate cancer research.

The starting gun

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 2^nd. 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 11^th.

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!!

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!

My Neverland

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.

When good isn't good enough, then you get more

Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.

Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.

The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.

Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor.  Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!

Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:

- Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)

- Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)

- Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)

Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December.  As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.

So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!

Plans make a bitter pill

I guess a little medical update might be appropriate right about now...

I'll start with what I 'know' instinctively based on how I am feeling and sense what is going on inside me. First, I have several swollen lymph nodes on the left side of my neck, where the neck and shoulder meet. These showed up in my last CT scan (December). They have increased in size, I can feel them but they don't bother me. If they became a problem surgery or radiation are options, but they are not a problem at this point. My guess or instinct tells me there are a few others in my abdomen that have increased in size. This is soley based on the occasional ache and pain that comes and goes is my lower abdomen/lower rear ribs.

I have a similar feeling regarding my bone mets or tumors. I know the next scans are very likely to show either growth in existing areas or new areas altogether. As much as my PSA has gone up over tyhe past six months and the inability to start a new treatment protocal, I believe these concerns are almost guaranteed.

So what lies ahead? What are we doing about it? First in order to remain sane and functional, we have to remain both calm and hopeful.

On Friday, July 1st, Mary spoke to the clinical trial nurse in Boston. Here is what we know right now. At the end of July we tentatively should get the green light to go to Boston four weeks later. At that time I will have several additional tests to confirm I am eligible for the trial. If I am, I would begin taking the medication (oral) at that time. I would then have to return to Boston every three weeks for four more visits. After that the appointment frequency would change to to 6 week intervals.

So four weeks of uncertainty, followed by four weeks of 'terror' and follow that up with a lot of travel time.
Having a new treatment that results in less pain and better PSA scores will make it all worth it!

Old Reliable

Aside from the obvious list of supporters;  Mary, Brad, family, friends, etc, there is one more person that has consistently been with me through this journey.

I was already a fan when I was diagnosed, but right around that same time I acquired the album, 'Songs from the Old Blue Chair'. At the time I was working in downtown Kansas City and had a forty-five minute commute twice a day. Everyday there he was with his songs about Boston, pirates, sailors, beaches and more. The songs and the album became my escape from the reality that was crushing me emotionally and weighing on my physically.

In no way would I ever claim to be his biggest fan or proclaim that I know every word to every one of his songs. As I type this entry the song 'Boston' just came on my iPod. As I sit on this airplane, taking my last of nine flights to Atlanta, I am really struggling not to cry. This song, if there was 'a' song, is the song that best encapsulates the last six and a half years of my life. The song is basically about a girl who left everything in Boston to embrace the island life. If you are a long time reader you know my love of the beach, the sand, sailing, etc. I want that life. To leave everything and take Mary and Brad and leave cancer and life behind. To basically re-live the week I just spent on Anna Maria Island.  Coffee on the patio listening to the surf, mornings by the pool, walks on the beach, fresh seafood daily and a carefree, laid back life of little to no worries. It's a dream I would hope to fulfill someday.

Thank you Kenny Chesney for your beautiful music and for providing the momentary escape from the reality that has become my life.

~~~~~

Is it just me or do you also see the irony that the location I am most likely headed for my next clinical trial is Boston? Hmm? Maybe nothing, but maybe fate is stepping it up a notch.

(footnote - the tears won, I couldn't completely fight them off. They were happy ones!)

I love a parade.....

I started this entry (from Boston) thinking it would be real easy to find the Broadway show or movie that this song came from....well I couldn't!

What I did find out was more than I ever wanted to know about Harold Arlen. Not only did he write "I Love a Parade", but also "Stormy Weather", "Over the Rainbow" and many, many more. My suspicion was that it came from "Music Man" but I could find no evidence to support this idea.

Anyway, I'm in Boston for a conference and while I had hoped to spend the evening in some local restaurant or pub watching the Red Sox win the World Series, the Rockies did as well as my Cardinals did against the Sox in 2004. So now I might have an opportunity to witness the 2007 World Series Parade in downtown Boston.... depends on the start time and my schedule at the conference tomorrow.....

My next monthly doctor appointment is a week from today. I find myself very indifferent about next week. Perhaps because, once again, there is no change in how I feel. This is a good thing - certainly no complaints! So, I'll have some 'chowdah' with an old friend tomorrow night and some local seafood and travel home on Wednesday night. Happy Halloween and a Blessed All Saints day as well!