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/

Donor Search - Strike 1

5/31/13 – I have an update to share with you regarding my Bone Marrow/Stem Cell donor search. I have two brothers and they were both tested to see if they were matches with me. Unfortunately neither one is a full match. One on my brothers was a half match and the other did not match at all.  My transplant doctors really want a full match so the next step will be for us to check the donor registry. Of course the good news is that the Ibrutinib is working and that I feel great. Based on this, I do not have a sense of urgency to rush and get the transplant. Maybe my doctors would not agree with this but I am clearly not in a life or death situation.

I think I would be remiss if I didn't say something about all those people who have volunteered to be bone marrow donors. It is an amazingly generous thing to do to help someone who is in need. Please allow me to say THANK YOU to all the members of the Bone Marrow Registry.

Here is a link to an awesome song about generosity. It’s call ‘The Generous Mr. Lovewell” by MercyMe. Enjoy!  http://www.youtube.com/watch?v=hCgLiZY5FQ8

Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God.

Hebrews 13:16

Let each of you look not only to his own interests, but also to the interests of others.

Philippians 2:4

Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”

Luke 6:38

But if anyone has the world's goods and sees his brother in need, yet closes his heart against him, how does God's love abide in him

1 John 3:17

More to come…

http://mantlecell.blogspot.com/

It Sure Looks Like the Ibrutinib is Working

5/21/13 – I met with Dr. Goy today to get the results of my first scans since beginning my Mantle Cell Lymphoma treatments with Ibrutinib 63 days ago. My MCL has reduced by 88%. All I can say is WOW!!!

I said to Dr. Goy ‘It sure looks like the Ibrutinib is working.” He responded... with a chuckle in his voice “it also helps to have good doctors.”  And I couldn't agree more. It also helps to have such a great support system of family and friends who are constantly praying for me. And, of course, with God, all things are possible.

Today I begin my 4^th cycle and sure, I still have a ways to go before I stomp this Mantle Cell Lymphoma out of my life…. but let’s forget about all that for now and let’s celebrate 88%.

To help celebrate here is a link the Delirious’ wonderful “Happy Song” performed live. Enjoy!:

http://www.youtube.com/watch?v=I8jRwXWk7fA

“And whatever you ask in prayer, you will receive, if you have faith.”

Matthew 21:22

More to come…

http://mantlecell.blogspot.com/

Did you just call me old?

5/19/13 – I must say, these 21 day cycles just fly by. Tomorrow is the last day of my 3^rd cycle. That will mark 63 days that I have been on Ibrutinib. Over this next week I will get the opportunity to see how I am responding to the Ibrutinib treatments. Tomorrow, May 20^th, I get first set of scans since I started treatments. On Tuesday, May 21^st I have an appointment with Dr. Goy where I will get my scan results and I will begin cycle 4.

As far as news on the transplant, there is no news. My brothers and I are still waiting to hear back on if we are matches.

With these last few weeks I have noticed some things that may be symptoms. For one thing it seems that my stomach can get upset with even the blandest of foods. Whether it is diarrhea or nausea, I experience discomfort almost every day. Another thing that is happening more often is I am getting cramps in my legs, feet and hands. I have been getting fairly severe “Charlie horses” in the calves of each leg. A few have been so bad that my poor wife had to peel me off the ceiling. The last symptom like item I will point out is being tired. If I sit still for any period of time I will definitely fall asleep. I haven’t been able to make it through an entire TV show in weeks. Sometimes perspective comes from the most surprising places. I had an eye appointment this week being I have had some trouble reading up close. I have been a customer of my optometrist for about 25 years and we have become good friends over the years. He had an interesting point of view on what I am going through. He said: “so… you are having trouble seeing up close, your stomach gets upset easy from eating, you get cramps in your legs and you fall asleep in front of the TV. Hmmmm…. I think it is just that you are getting older and you are experiencing the same stuff that other people who are your age go through.”  I wonder…  he is probably correct. WOW having MCL is one thing but now I feel OLD.

Here is a link to an all-time great song about getting old by my all- time favorite performer. Mr. Neil Young singing “Old Man” Enjoy! : https://www.youtube.com/watch?v=221mohEolWc

Gray hair is a crown of glory; it is gained in a righteous life

Proverbs 16:31

More to come…

http://mantlecell.blogspot.com/

If I Don't Feel Sick… I’m Not Going to Act Sick

4/28/13 – I am quickly approaching the end of my 2^nd 21 cycle on Ibrutinib and I continue to feel great. I have been able to take 3 business trips in the past month via airplanes with no fear of getting sick. I have done all kinds of heavy duty yard work and I haven't felt weak or out of breath. I have pretty much been living my normal life with the exception of taking my pills every day at 5:30 AM (but this is the time I chose). I will say that my wife (Sue) and family and friends often tell me that I should “slow down”, “be careful”, "don’t overdo it”, and on and one and on with comments that show that they care for and worry about me.  My response has been; “If I don't feel sick… I’m not going to act sick”. I really feel that this is the way to go.

Another thing that seems to be asked of me often is; “If Ibrutinib is so great, which am I having a transplant?” This is a tough question but I see it this way: From everything I know about Mantle Cell Lymphoma, I have yet to hear anyone say it is curable. As promising as Ibrutinib is, I am not hearing that MCL can be cured with it. My expectation with Ibrutinib is to greatly reduce my disease (possibly get me back to full remission). This is where the transplant comes in. Successful Ibrutinib treatments followed by the stem cell/bone marrow transplant is the first time I have ever heard the words "Possible Cure" and "Mantle Cell Lymphoma" in the same sentence.

My unscientific description of the theory of the transplant is as follows: Cancer cannot be transferred from one person to another. For example if I were to take my MCL cells and injected them into another person their immune system would kick in and kill the cells. If the opposite was done and we took a healthy person's immune system (stem cells or bone marrow) and put it in me the theory is that the same thing would happen. The MCL cells would be killed.

There is no doubt that there is much more science behind this and sure, the transplant is by no means a trivial procedure, but if going through it means there is a chance that I will never have to deal with my MCL ever again, I am very willing to jump at this opportunity. When we discussed this with our family doctor he referred to the transplant as being a “gift”. 

Speaking of the transplant, the donor test kits were sent out to me and my brothers this week. Hopefully we will know soon if they are a match.

I will be at the Cancer Center on Tuesday, April 30^th to begin my 3^rd cycle.

Another key date is that I will be scanned on May 20^th. This will be the first time we will get to see how effective Ibrutinib is with my MCL.

In times like this, when we are feeling anxious as we wait and wait and wait for answers, we always have music and scripture to rely on. Here is a link to a great song that I hope you enjoy. It is called “Carry Me”: http://www.youtube.com/watch?v=3jZmBQn_018

Carry Me

I try to catch my breath
It hasn't happened yet
I'm wide awake in the middle of the night scared to death
So I prayed God, would You make this stop
Father please hold on to me, You're all I've got

Carry me, carry me, carry me now
From my sinking sand to Your solid ground
The only way I'm ever gonna make it out
Is if You carry me, carry me, carry me now
God carry me, carry me, carry me now

Jesus calm my heart
Come near me please
Lord don't let these worries get the best of me
Oh I believe, that You're still here with me
Cause You meant what You said when You said You'd never leave

Carry me, carry me, carry me now
From my sinking sand to Your solid ground
The only way I'm ever gonna make it out
Is if You carry me, carry me, carry me now
God carry me, carry me, carry me now

Carry me
God carry me
Carry me
God carry me

I'm at the end of myself
I know I've got nothing left
Feels like I'm stuck in the valley of the shadow of death
And I've been down here so long
I just can't find my way out
Oh God I don't stand a chance
Unless You carry me now
God carry me now

Carry me, carry me, carry me now
From my sinking sand to Your solid ground
The only way I'm ever gonna make it out
Is if You carry me, carry me, carry me now
God carry me, carry me, carry me now

Carry me now
Carry me now
Carry me now
Carry me now

Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.“
Matthew 11:28-30  

More to come…

http://mantlecell.blogspot.com/