Advanced Prostate Cancer

Moving on

Advanced Prostate Cancer, Cabozantinib, David Emerson -

I always knew there would be an end to my current treatment, there is no cure after all. I knew it would only last so long. Like each of the proceeding treatments, this one was just me scuffling with the enviable, time.

My appetite had gotten so bad last week that we called the nurse in Boston on Monday morning. After consulting with the doctor, she called back and told me to stop taking the drug (XL-184). We don’t know how quickly the side effects will subside, but we are hoping soon, so that I can get my strength back and resume some semblance of normalcy.

Mary and I will be going to Boston in the next several weeks. I will have scans done once again and then we will meet with our doctor. Item one on the agenda will be to determine our options – should we change the dosage to a lower amount, or what is next? There is a newer trial of XL-184 at 40mg (I’m still at 50mg), but I believe the way the trials work, to adjust to the 40 mg I would have to quit the existing trial I’m in and and qualify for the newer trial. If the new trial has an exclusion criteria for previous XL 184 patients, then I would not qualify and must pursue other options.

Once we determine the next treatment, I’ll share the details. Since I was diagnosed with advanced prostate cancer, we have worked to support the research to find improved treatments and ultimately a cure for this dreadful disease. We are living proof of this need. For now, me move on with our heads held high and prayers on our lips and in our hearts.

Another Loss

Advanced Prostate Cancer, David Emerson, John Arnold, PCa -

I had mentioned John A. here briefly over the last few months. On March 25th the disease finally got the best of him.

He leaves a huge hole in the on-line community and will be greatly missed. He continued to guide us and provide inspiration as he and his wife Jeanne continued to share their experience through the last weeks and days of his journey on earth.

There were a number of tributes and things written about John, I believe my friend Joel did an exemplary job: http://advancedprostatecancer.net/?p=3135

I have no other words to add other than I really hate this disease.

To John:
Hail Mary, full of grace.
Our 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.

From an unexpected source

Advanced Prostate Cancer, David Emerson, XL 184 -

There’s a light at the end of the tunnel;
though, it seems to be fading fast.
And my eyes are fatigued and blurring
. . . yet, my faith tells me I will last.

There’s a train sounding off in the distance;
though, it’s barely a whisper,now.
And my hearing is not what it used to be
. . . yet, I know that it’s there, somehow.

There’s a mountain that looms before me;
there’s a storm driving at my back;
and a river that rages beneath my feet
. . . yet, I’ll weather the worst attack.

For, my spirit will not diminish,
nor my confidence ever grow weak.
I have hope, I have faith and the gift of love
and a world full of dreams to seek.

Wild Willy
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I received this poem the other day from a friend, one I would least expect to send a poem.
However, he couldn’t have read my situation any better. The words hit so close to home.
Thanks, this was really special.

Same ol’ song and dance, my friends

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

My own little beta test

Advanced Prostate Cancer, David Emerson, Firmagon, PSA, Xgeva, XL 184 -
Monday we visited with my local Oncologist, Dr. V. M PSA was 1,663, that is down 130 points from the previous month. Although we are not screaming from the rooftops, psychologically, we always feel more positive when we see the PSA moving in a downward direction.

Back in January we discussed with Dr. V the fact my Potassium level was low. This is a known side effect from my current long term diarrhea issue. While I was someone who used to eat at least one banana a day, with my current appetite, bananas are off the menu. We have tried coconut water and have now added a prescription Potassium pill to the regime and will test again next month. Just another side effect to add to the list.

Additionally, I received my usual monthly shots of Xgeva (bone strengthener) and Firmagon (testosterone suppressant).With so many variables going on with my case, sometimes it’s hard to track down the cause or correlation of certain side effects. The past two plus weeks I have been relatively pain free. I have not had any Advil and I stopped having to sleep on a heating pad at night. This was not true for the ten days to fourteen days that followed my last shots of Xgeva and Firmagon.

Where I am going with this is I believe that I have figured out the pattern. Starting a few days after receiving these two shots, I begin to have pain. It may start in my shoulders, hips, legs, middle or lower back, but it never starts in the same place. It usual moves around every day or two and like I said above, it will last around ten days. I treat it with Advil every twelve hours or so and sleeping on a heating pad helps considerably. The pain ends rather abruptly, and the second two week period will be closer to normal ~ free of bone pain.

This is all just a theory right now, but over the next few days you can bet I will be very in tune with each little ache and pain.
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After a very mild winter, spring is right around the corner! Our tulips and hyacinth have popped out of the ground. I cannot wait for warmer days. Mary and I went for a walk around the neighborhood on Sunday. It felt great to get out and enjoy the fresh air. This this is something we really plan to continue.

7 year itch, of a different type

Advanced Prostate Cancer, David Emerson, PSA, XL 184 -
Today is the 7th anniversary of my blog. Seven years, almost 700 entries later, and I’m still here.
 
The last line of my first ever post holds more true today than ever:
But I worry about them both emotionally and psychologically. I can’t imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have….. 
 
Physically, the seven years and eight different types of treatment for this disease have taken their toll. Not being able to play disc golf or even work out gets to me. The lack of both make me feel lethargic at times. I want to do more, but can’t in some cases and shouldn’t in others.

A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.

You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
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Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.

Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called “The Mighty” and “The Wonder-Worker” because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

An interesting thing happened on the way…….

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

Monday was my monthly oncologist appointment here in Kansas City. It went rather well, in fact I’d almost say it went great!

Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions.  The doctor is very compassionate and open to helping us choose the right path.

The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.

I also received an update on my PSA, the last three measures were:
Dec 5:  1,961
Jan 3:    1,317
Jan 30:  1,799

Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!

The Cake Gets Bigger

Advanced Prostate Cancer, birthdays, David Emerson, PSA -

Today is my 49th birthday. Frankly, I wasn’t sure I was going to make it, seriously.

The first birthday post I publishedin this blog was in 2006:
http://flhw.ddmpreview.com/were-going-to-need-a-bigger-cake/

Although a number of names would need to be added to the acknowledgment portion, I likely could have re-posted the entry word for word this year and the message would have been then same.

It’s a weekend of friends, family, relaxation and celebrating 49. It also marks the beginning of all the sorted milestones, initial diagnosis, first scans, official diagnosis and the beginning of living with this dreaded disease. I’ll do my best to mark each of these with a post.

For now, HBD2ME!!

Winter’s got a hold on me

5K Prostate Cancer, Advanced Prostate Cancer, David Emerson, PSA, Steve Jobs -
As I mentioned in my last post, I had this big plan to blog a lot this year. I’ll eventually catch fire and start to post more, but for now, winter’s got a hold on me and I just don’t feel very creative or motivated. I can’t complain about the weather that we have had so far this season, but it is still winter.
There are no real changes in my health. The fatigue is a little better. I have been in the office full time for seven straight days. The lack of appetite and diarrhea continue. The former is constant, the latter day to day.
I will share that I am reading the Steve Jobs biography. While I was always a fan and thought highly of him, this book has totally changed my opinion. To me, his management style and the way he treated people completely take away from his creative brilliance. I’m just half way through with the book, but cannot image there is some hidden gem in the latter half of the book that will change my perception of the man. Once again, his work and the products Apple created upon his return in the late 1990’s are unheralded,  but at what cost to his family, friends and those that worked for him. This is just my opinion, you can decide on your own. The book is a thousand pages, and for the most part, a page turner.
Since we didn’t go to St. Louis over the holidays, we have been pleased to have family visit here in KC. Last weekend  my brother Doug and his wife Michelle came in.   We didn’t do much except watch some movies and football, but it was good to have the house full and spend time with them. The weekend coming up my other brother Dan, sister Barb and nephew Zach are coming. I look forward to that as well.
For now I will continue to trudge through winter. It has been extremely mild here in Kansas City and it looks like it might continue for the next several weeks. The next thing you know it will be spring, my favorite season of the year.