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/

End of My First 21 Day Cycle on Ibrutinib

4/8/13 – Today is the last day of my first 21 day cycle on Ibrutinib  and I must say that I still feel great and have experienced no side effects whatsoever. I will be at the John Theurer Cancer Center at Hackensack University Medical Center tomorrow to begin cycle 2. As with the beginning of cycle 1, this will include the pharmacokinetic testing (known as PK sampling). PK samples will be taken at Pre-dose , 1 hours after dosing, 2 hours after dosing, and 4 hours after dosing.

Update on my bone marrow/stem cell transplant: I am still waiting for insurance to give the go ahead to begin testing for donors. I have to believe I will hear something soon. 

The more I read about the transplant the more excited I get. Could this be the path I need to take to be cured of Mantle Cell Lymphoma? I, of course, cannot say for sure but it sure seems very promising.  

“Not that I have already attained, or am already perfected; but I press on, that I may lay hold of that for which Christ Jesus has also laid hold of me. Brethren, I do not count myself to have apprehended; but one thing I do, forgetting those things which are behind and reaching forward to those things which are ahead, I press toward the goal for the prize of the upward call of God in Christ Jesus.”

Philippians 3:12-14 

More to come…

http://mantlecell.blogspot.com/