The Long and Winding Road... begins

As I said with my last post, my transplant was moving forward. An unrelated near match has been identified, contracted and has agreed to be the donor. The match is a near match (8 of 10) but the areas of mismatch are not one that are of concern for my doctors. We have come up with a plan that we are in the process of executing one thing at a time. One of the early tasks was to get dental clearance. 

11/1/13 – At my dental clearance appointment I was found have two teeth in question. One that possibly needed to be pulled.  I was able to get an appointment with an oral surgeon on 11/4.

11/4/13 – at the appointment with my oral surgeon it was decided that the tooth needed to be pulled. After consulting my oncologists and transplant doctors, the oral surgeon was given to go ahead to pull the tooth. This ended up being the correct decision being a fairly large infection was found at the root of the tooth. Also on 11/4 I went back to my dentist and had a tooth filled.

11/5/13 - I had my visit with Dr. Feldman of the The John Theurer Cancer Center with I continue to receive positive results. I was given the OK the begin cycle 12 on Ibrutinib.

11/6/13 – I went to work and had a fairly normal day but at the day went on I began to feel like I had the chills and had a bit of a headache.

11/7/13 – At around 2:00 AM my wife noticed I had been sweating heavily. She took my temperature and it was 103.7. She immediately called The John Theurer Cancer Center. She was told to give me Tylenol and if my temp didn’t come down to bring me to the emergency room at Hackensack University Medical Center. The Tylenol worked. I went to my family doctor, Dr. Eric Hansen and he gave me a thorough exam and put me on a stronger antibiotic. In addition he ordered a chest x-ray and blood tests. We had the x-ray right away (which came back clear) but were not able to get the blood test done being we had to head off the Hackensack to meeting with Dr. Rowley, my transplant doctor, to review a number of things for the transplant. Knowing about the fevers, Dr. Rowley made sure all the blood tests were completed plus he had some additional tests run(all test were negative). When I left Dr. Rowley my temp was normal but I did feel like I have the chills.

11/8/13 – At around 12:30 AM, my chills had gotten worse. My temp was 103.3. My wife called the Cancer was told to bring me to the emergency room. The emergency room again put me through a battery of test and I was official admitted into the hospital a few hours later. I was put on broad span IV antibiotics. Dr. Goy came to visit me in my room to examine me. He ordered a CT of my head (which came back negative).

11/9/13 – The trend of having a high fever in the early AM continued. At about 2:00 AM my temp was 103.3. I was given Tylenol and it brought my fever down. I went for a PET scan in the late morning, I was feeling pretty good. When I returned my fever was normal. Over the next few hours I remained that way. At 10:00 PM my temp was 98.9.

11/10/13 - I was wondering what my temp would be at 2:00 AM. Well, 2:00 came and went but I slept right through it. I guess the nurses didn’t want to awake me. At 4:00, the time when they come and take my blood, I had asked for my temperature to be taken. It was 102.7. Not 103… but not what I wanted to hear. I had a good day. As the night nurses are coming into work I am taking a pool as to what my temperature will be at 2:00 AM. By the way… the nurses here at Hackensack University Medical Center are awesome.

11/11/13 – My temp was 99.0 at 2:00 AM. This was great news. I felt strong all day. When I met with Dr. Mateo he said I should be able to go tomorrow.

11/12/13 – My Temp was 99.0 again at 2:00 AM and 98.4 at 7:00 AM. And truly am ready to go home today. I think this storm has past. Hopefully this is not a sign of things to come. Maybe it was God’s way of putting me through some marathon training as my transplant approaches.

Did the dental work have something to do with the fevers? I don’t think we were able to prove that one way or the other. It does make sense that if an infected tooth is pulled that maybe the infection could get into your system. I guess the lesson learned here is that next time to prepare for a transplant I will not take the dental piece so lightly and get it covered much more in advance.

So what does this all mean from the prospective of my transplant? How does it impact my transplant? Maybe not at all. At this point all our plans for transplant are still on. The plan is:

11/13/13 – Receive Rutuxan as out patient

11/18/13 – I go to a transplant class

11/20/13 – Catheter installed

11/21/13 – I’m admitted into the hospital for chemo

11/25/13 – The donor makes the donation

11/26/13 – The stem cell transplant happens

So my new journey has begun. I look forward to telling you about it.  

No evil shall be allowed to befall you, no plague come near your tent. For he will command his angels concerning you to guard you in all your ways. On their hands they will bear you up, lest you strike your foot against a stone.

Psalm 91:10-12 

More to come…

http://mantlecell.blogspot.com/

Remission Accomplished Again… Transplant is Next

10/8/12 – Today I met with Dr. Goy for my normal cycle follow up and to review the results of a PET scan I had last week. Dr. Goy said: “You are in full remission…. This makes me very happy”. After a couple of moments of silence he then said, looking at the research nurse, “So where are we with the transplant?”

10/28/13 - From that question until now the entire process has really accelerated. It is looking like the transplant with begin within the next couple of weeks.

Although my daughters and brother did not pan out as being good donors (even as half matches) there have been two near matches found. This mismatch part is in areas where it is not seem as being critical. With this being said, a request for donation has been made. Assuming the donor says yes and gets through the pre-testing… it sure looks like I will have my transplant before Thanksgiving.

To prepare for this I have a dental appointment scheduled for October 30^th to make sure I have non issues with my teeth. On Friday, November 1^st I will go through all my work up tests at Hackensack University Medical Center. On Tuesday, November 5^th I have my normal cycle visit with Dr. Goy. On Monday, November 11^th I have a Transplant Class where I will get an education on what I am really getting myself into. According to my Transplant Coordinator, this is a very good chance I will be in the hospital before November 11^th. On top of that I have begun getting all the other details of my life in order (leave from work, etc…).

The way it works is that once the donor is fully committed to provide me the gift of his bone marrow and a date to extract the bone marrow is set, we need to count back about 9 days. That will be the day I check into the hospital. I will get chemo for about 8 days and on the very next day the bone marrow will be infused.

I just know that everything will work out for me.

This bring me back to a prayer that my pastor taught me back in 2008:

"Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace"

All the battles of my life are the Lord’s. As I stand in faith, He fights them for me. 1 Samuel 17:47

More to come…

http://mantlecell.blogspot.com/

I wanna get lost in your rock and roll and drift away

9/30/12 – Today was the 5^th Annual Celebrate Life and Liberty event hosted by the John Theurer Cancer Center at Hackensack University Medical Center. It seems that every year this gets bigger. The event is intended to celebrate survivorship and give inspiration and support to those in the cancer community who are still in treatment or recovery as well as all of our care givers who, to say it simply, are blessings from God.

There were 3 featured acts who entertained a crowd of about 5,000. The entertainment was kicked off by Quixotic an ensemble of artists from various disciplines including aerial acrobatics, dance, fashion, film, music and visual f-x. There were followed by The Village People, famous for hits like “YMCA”, “Macho Man” and “In the Navy”. The BIG show ended with Gloria Gaynor who inspired the crowd with her “I Will Survive”.

In addition to the stars, a number of survivors provided entertainment. I was deeply honored to be asked to perform. I, of course, pulled my daughter Alli up on the stage with me. We are by no means professionals but we put our hearts into a song called “Drift Away”. Below is a link to us performing. I hope you enjoy it. We certainly had a blast doing it.

Me introducing "Drift Away"
http://youtu.be/kOdwHVHGr8s

Me and my daughter performing "Drift Away"

http://youtu.be/Q91Gkjfak04

In addition, here is a link to The Village People's performance of "YMCA" 

http://youtu.be/b4REX2yuOSQ

Lastly, here is link to Gloria Gaynor singing "I Will Survive"

http://youtu.be/UMZksYtompM

Make a joyful noise to the Lord, all the earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.
Psalm 100:1-5

I will provide an update once I know more about my transplant

More to come…

http://mantlecell.blogspot.com/

Star of Ibrutinib

9/24/13 – I had my 3rd set of scans yesterday (I get scanned after every 3 cycles or every 63 days) and I met with Dr. Mateo today to get my results. As with the last time I met with Dr. Mateo, he started with a comment that brought a big smile to the faces of my wife and me. “You are the star of Ibrutinib.” My Mantle Cell Lymphoma is now considered reduced by 100% . I just cannot put into words how thrilled I am.

So, what’s next? Well the stem cell/bone marrow transplant is looking more and more like a reality and, my guess is, it will be sooner versus later. With my MCL reduced to nothing, it is the perfect time to begin the transplant process. BUT, there is still a major obstacle to pass. I must be a little too unique because so far we have still not found a full match. In order to move things forward the transplant team is now looking in another direction to find me a donor. It is called a “Tier Preferred Half Match.” I do have two daughters who are certainly half of me. In addition, one of my brothers is a little better than a half match. We will be testing all three who is the best of the Tier Preferred. I am not an expert on this but my understanding is that we will select the person who has different “T” receptors on the natural killer cells. We should know who my best donor option is within the next 2 to 3 weeks.

I often get asked the question: “if the study drug is working so well why you still need a transplant?” This is an excellent question and believe me I have asked my doctors it many times. It all comes down to the fact that no one is sure how long the Ibrutinib will work. If this was 5 years from now I would possibly do things differently… but it’s not. I have to make the decision based on what we know.  I am a young 52 year old and I certainly have many things I still want to do. I will go with whatever gives me the best chance of a long life.

 To change gears… This Sunday, September 29^th is the 5^th Annual Celebrate Life and Liberty event at Liberty State Park. This is an event that is sponsored by the John Theurer Cancer Center at Hackensack University Medical Center and of course Dr. Goy will be up front with, cancer coach, Sharon Parker MC-ing the event. The special performing guests will be Gloria (I Will Survive) Gaynor, and the Village People. In addition, my daughter Alli and I will be up on the stage performing a song as we did at last year’s event. It is sure to be a blast. I can’t wait to tell you all about it.

“A Psalm for giving thanks. Make a joyful noise to the Lord, all the earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.” 
Psalm 100:1-5

More to come…

http://mantlecell.blogspot.com/

Hitting a Home Run with Ibrutinib

7/22/13 – I met with Dr. Mateo today to get the results of my 2^nd set of scans. His comment to me was:  “you have really hit a home run with this drug.” After 126 days on Ibrutinib my MCL has reduced by 90%.

I am now starting cycle 7. This will be a little different because I am having some dental surgery on August 1^st. I am having a tooth extracted and since it will require stitches I will need to discontinue taking Ibrutinib for 7 days prior to the procedure and another 7 days after.  This is required because one of the side effects of the drug is, like many other drugs, it causes the blood to be thinned. With this you always need to be cautious of excessive bleeding. I am not seeing this as a big deal.

Regarding the Bone Marrow transplant process… so far nothing has come up in our donor search. Coincidentally, while we were at the Cancer Center we ran into our transplant coordinator. She shared with us that the plan is to take a closer look at my brother, who was a 50% match. We will also test my daughters, who are 20 and 23 years old, to see if either of them would be a good match. Both of my daughters will be 50% match. In speaking to both my daughters, they are both very excited with possibility of being the donor for their dear ol dad. Sounds like they want to arm wrestle for this “honor”. I am so blessed to have the greatest daughters in the world. And I would be remiss if I didn't say how lucky I am to have the great brothers I have.

I know that a 50% match is not ideal but according to the transplant coordinator, there is not any conclusive evidence on if a 100% match of a someone who is not related to me as being more or less effective than a 50% match of someone who is related to me. In addition, The John Theurer Cancer Center at Hackensack University Medical Center is performing more and more 50% match transplants with excellent results.

So for now I just need to be patient and live my life to the fullest… one moment a a time.

“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” 

John 3:16

More to come…

http://mantlecell.blogspot.com/

Happy 5 Year Anniversary

7/17/13 – It was 5 years ago today when I was diagnosed with Mantle Cell Lymphoma. Back in 2008 it was not easy to find any information that gave hope of a happy recovery. Searching the internet only returned postings of doom and gloom and in memoriams. In truth I had nothing but hope, faith and love and it is these which helped me to the point that I am at today. I guess the moral of the story is to never believe what you read on the internet… except this blog, of course.

Sure my adventure continues and I have no idea where it will take me. For one thing we are still in search of a donor. The good news is that I am in excellent health and am feeling well.  

What I do know is that every day is a blessing and that I need to live my life one day at a time, living every moment to it's fullest.  

Also, I do know how blessed I am to be responding so well to Ibrutinib, 

and how blessed I am to have so many people who care deeply for me 

and how blessed I am to have wonderful doctors who are fighting hard for me and all my MCL peers every day.

I want to thank everyone who have been so generous with their prayers, kindness and compassion. It is because of you that I know I will be OK.

In celebration of my 5 year anniversary I would like to share with you a wonderful song and its lyrics. It is called  Don’t Give Up Hope  by Third Day

Here is the YouTube link: http://www.youtube.com/watch?v=ueB2f33d--8

Don’t Give Up Hope

This world just keeps on getting crazier and crazier everyday
You’re so afraid
Sometimes it feels like it’s chasing your sanity away
And you start to break
Let me help you find your way

Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can feel like the ending
Could just be the beginning
Don’t give up hope

Your life is spinning like a rocket that’s gone out of control
And you’ve let go
You’re slowly losing your confidence, you’re a wounded soul
But I hope you know
I can help you find your way

Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can seem like the ending

Could just be the beginning
Don’t give up hope
Don’t give up hope now

Don’t turn around
Keep on moving
Find your faith
You’ll be doing all right now
Don’t look back
Keep on moving
Find your faith
And you’ll be doing all right now
Don’t look back
Keep on moving
Find your faith
And you’ll be doing all right now

Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can seem like the ending
Could just be the beginning
[Repeat 2x]

I am coming up to the end of my cycle 6.  My next scans are scheduled for July 22^nd and I will get my results on July 23^rd.

Be strong and take heart, all you who hope in the LORD.
Psalm 31:24 

More to come…

http://mantlecell.blogspot.com/

Do I Look Lucky?

6/28/13 – One of my favorite lines from a movie is in the film Rocky II. The movie begins where the first Rocky movie ends. Rocky and Apollo Creed just finished a boxing match where they literally beat the heck out of each other. Apollo Creed is declared the winner of the fight. This is followed by both boxers being rushed to the hospital and a scene where the boxers meet in the emergency room. Apollo is beside himself that he almost lost the match to the unknown underdog named Rocky. He approaches Rocky with a verbal attack that concludes with “You are the luckiest man alive”. Rocky looks at his wife Adrian with his broken eye socket and nose and says: “Do I look lucky?”

It is very funny how we use the word “lucky”. I guess being lucky is a matter of what perspective you have. Back in March I had a post about a great gift my wife gave me for my birthday. It was a Saint Peregrine medal. What I didn't say was that she had it inscribed with the word “Lucky” on the back of it. And in all honesty, I am lucky. I truly feel very lucky that I am scanned on a regular basis and that my relapse was caught so early. I truly feel lucky that I am surrounded by many great and supportive people who love me. And I feel extremely lucky because of all my family and friends who are contacting me and asking me how much they want to me my donor. I cannot tell you how many times a day people ask me “What do I have to do to be your donor; I will do whatever it takes!” How much more lucky could I be than knowing so many people care for me and want to help?

It would be so awesome if finding a donor was that easy… but it is not. I have been told that there is a better chance of winning the lottery than finding a donor among my friends. I have explained to all who have asked me about being a donor is that if they truly want to help, the best thing they could do is to join the donor registry. True, most likely they will not be able to be my donor but maybe they could help someone else.

I did a little research and found the following website that explains how you could become a donor. The website is: http://bethematch.org/

This website explains how to join on-line, how to join in person, what your donor commitment will be, it answers frequently asked questions about being a donor, provides medical guidelines about being a donor, and it addresses myths and facts about donation. If that is not enough they provide a phone number that you could call and get additional information.  The phone number is: 1-800-MARROW-2 or 1-800-627-7692

It certainly couldn't hurt the check out this website. Who knows, maybe you could be someone else’s Lucky Charm.

Here is a link to an all-time great song about being a friend to those in need. Enjoy!

“You Got A Friend”  by James Taylor

http://www.youtube.com/watch?v=AIS-RuoZxCI

Quick Health Update: I really do not have anything new and exciting to report. I am pretty much in a bit of a holding pattern as I wait to hear about the next steps of the transplant process.

I continue to feel great and I am able to live a very normal life. To be honest I still feel a little tired and I have been feeling some weakness in my legs. We have been watching this closely but I doubt it is anything to worry about.

I am coming up to the end of my cycle 4. My next appointment is July 2^nd where I will begin cycle 5.  

My next scans are scheduled for July 22^nd and I will get my results on July 23^rd.

This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.

John 15:12-15

More to come…

http://mantlecell.blogspot.com/