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/