Saturday, July 15, 2017

A Happy 9 Year Anniversary

7/17/17 – On July 17th 2008 I posted “On July 17th, I met with the surgeon to get the results of the mediastinoscopy. This is when I was given the news that I had Mantle Cell Lymphoma.” This led me on an internet search that returned grim and discouraging results. I am absolutely thrilled to say “Never believe what you read”. Here it is, my 9th Anniversary of being diagnosed with Mantle Cell Lymphoma and… 
I”M STILL STANDING after all this time!!!!

Even better yet, I am healthy and strong. To make things even more exciting and encouraging, I had my port removed this past Tuesday. Now how great is that???
True, my 9 years has been full of twists and turns and ups and downs but…
I”M STILL STANDING better than I ever did!!!!

My Adventures with Mantle Cell Lymphoma has been one that has truly been full of Hope, Faith and Love… and I could have never gotten to where I am without my incredible wife who has been by my side every second of my journey. I hope my journey is seen as an example of why you should never give up… and how by having faith and keeping positive will lead to good things.

As a follow up to my last post, it appears that the scan of my lungs is showing improvement. The hope is that a few IVIG treatments will clear things up. I’ll be getting additional IVIG’s every three weeks for a while. My next scans are scheduled for December and I am confident they will be just fine.

So now that I have no port… I have no disease… and all my ailments are on the mend… What will I do with myself???? I will simply Live, Love and Laugh. Most of all… I will enjoy the wonderful life that that God has gifted to me.

To mark my 9th Anniversary, here is a YouTube link for the Elton John classic “I’m Still Standing”. Enjoy!

Here is another YouTube link for a fantastic song by Peter Gabriel, it’s called “Don’t Give Up”

Cast all your anxiety on him because he cares for you.
1 Peter 5:7


Thursday, June 22, 2017

The Good, the Bad and the Ugly

6/22/17 – As I am coming up on 9 years of my Adventure it is safe to say that every cloud has a silver lining…. and yes, possibly every silver lining has a cloud. It all comes down to these character-building experiences we live through every day.

I have been dealing with a cough and shortness of breath since March. I haven’t written about it because I had thought it was my typical winter to spring cold with a topping of allergies but it just wouldn’t go away. I have been on a bunch of meds and have seen a few different specialists and have had chest x-rays, a chest CT and a CT of my sinuses that showed nothing. All I can say is that no matter what we did I had no relief. But as my world goes the day arrived that I felt better and no one can tell me why I was sick and why I feel better… it just happens.

 So why title this posting after a Clint Eastwood western? I have had a both great and confusing week. On Tuesday, June 20th I had my periodic PET scan and met with Dr. Goy for results. My results were simply great. There is no sign of MCL. That is certainly the GOOD!

BUT… as we were reviewing the PET, Dr. Goy expressed concern that there was something showing in my lung… it’s definitely not Lymphoma… but what is it? Could I have had pneumonia? Could it be that my lungs have scaring from my years of treatment? Could it be APT (Acute Pulmonary Toxicity)? Who knows! But either way this was strange to hear being I was told that my recent CT’s and X-Rays of my chest showed nothing. I am having another CT of the chest in a couple of weeks to see if anything has changed.  This is the BAD simply because I do not like foreign things showing up in my scans and my lungs.

Today, Thursday, June 22 I met with a Pulmonary doctor to check my lungs. I had a number of Pulmonary tests, which for the most part came back as normal. The one negative was that it showed I have below normal air intake. We did review the PET scan side by side with the CT from a few weeks ago and is was very clear that whatever is showing on my PET was not there a few weeks ago. This is just strange. When I was feeling very sick nothing showed in scans but when I am feeling better something is showing in the scans. This confusing deployment is what I will call the UGLY.

This all amounts to what I have been saying for a long time now… it is so important to keep positive. So many times I have dealt with challenges… and for some reason I always seem to get passed them. I am sure this will be the same.

My upcoming appointments are as follows:

July 6th – CT Scan
July 11th – Follow up with Transplant team
July 13th – Follow up with Dr. Goy
July 20th – Follow up with Pulmonary doctor

God has been very good to me. He has showered me with a great family, friends and has answered many prayers. I certainly have nothing to fear.

Here is a YouTube link to a fantastic song by Chris Tomlin called “Whom Shall I Fear (The God of Angel Armies)” that does a great job explaining how I feel. Enjoy!
https://www.youtube.com/watch?v=R0gu0nOaFsI

The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?
Psalm 27:1


More to come…

http://mantlecell.blogspot.com/

Tuesday, April 18, 2017

A Cure for the Incurable

4/18/17 – I was at the John Theurer Cancer Center at Hackensack University Medical Center today for my periodic CBC (blood test) and all my count continue to be normal. This, of course, is fantastic news. With this news, we now feel comfortable to start the process of having my port removed. Hopefully it will happen within the next month.

With this positive news, a conversation ensued with Dr. Rowley (a wonderful doctor and one heck of a nice guy) and our favorite APN, Melissa over the status of my Mantel Cell Lymphoma. We pondered… Am I in remission or could it be that I am actually considered cured?

Cured??? I had always had the understanding that MCL was incurable. How can you cure the incurable?

As it turns out MCL is probably still considered incurable when it comes to using chemotherapy to treat it… BUT with a Stem Cell Transplant, specifically an Allogeneic Stem Cell Transplant (the stem cells come from a matched related or unrelated donor) is it possible that this can result in a cure of MCL?

Let’s explore my adventure and see if there is anything that possible support this:
·       On July 29, 2015, I had my last Chemo treatment. Scans that followed showed that the four treatments of RBAC did not achieve remission.
·       On August 3, 2015, I had my first ever DLI (Donor lymphocyte infusion – a Stem Cell Transplant booster).
·       Following the DLI… On October 13, 2015, scans showed that I was in remission
·       On November 12, 2015, I had a second DLI.
·       Today, Tuesday, April 18, 2017, I continue to be in remission and MCL free.

Could it be that the Stem Cell Transplant after being boosted with DLI’s has turned my immune system into a disease fighting machine? I would love to think so.

As my good doctor, APN, my wife and I continued to chat we settled on a statement that “Mantle Cell Lymphoma is an incurable disease EXCEPT when it comes to an Allogeneic Stem Cell Transplant.” I’m not sure you will find this in any medical journals but I am personally feeling really good about it being accurate.

Saying this, MCL is certainly a very manageable disease.  As I have said many times, I plan to live to 100… with or without MCL.

As far as an update for the rest of my health, sure, I have this MDS thing looming in the background… but I have absolutely no symptoms and I spend zero time worrying about it. We will continue to monitor it with periodic CBC (blood tests).

As far as my next follow up appointments, I have my next set of scans scheduled on June 20th and a follow up review with Dr. Goy on the same day. Also, my next appointment with Dr. Rowley and the transplant team is scheduled for July 11th.

LORD my God, I called to you for help, and you healed me.
Psalm 30:2

In the Easter season is important that we remind ourselves that Jesus died to free us from sin. Here is a YouTube link to an awesome song called “Forgiven” by David Crowder. 
Enjoy!!!

He was delivered over to death for our sins and was raised to life for our justification.
Romans 4:25


More to come…

http://mantlecell.blogspot.com/

Wednesday, January 25, 2017

Counting My Blessings

1/25/17 – I had a follow up appointment yesterday... and again my counts were to near perfect. I am truly blessed that I continue to have no symptoms of MDS. I can now go 3 months before I need to get checked again. My next appointment is scheduled for April 18th.

The one thing that wasn’t great was my creatinine level. I seem to be running a little high. The blood creatinine level typically shows how well your kidneys are working. A high creatinine level may mean your kidneys are not working properly. A normal creatinine level for a healthy man is between 97 to 137 mL/min. I had a result of 158. I have had high a creatinine levels in the past and was able to get back to a normal level by drinking plenty of water. I really do not see this as a big deal. I’m sure I will be able to be back at a normal level in no time.

The bottom line is that I am feeling great and I am enjoying life. I count my blessings every day and I greet each day with rich gratitude. Thank You, Lord!!!

Here is a YouTube link to an awesome song called “Thank You, Lord” by Paul Baloche. Enjoy!!!

Oh give thanks to the Lord, for he is good; for his steadfast love endures forever!
Psalm 118:1


More to come…

http://mantlecell.blogspot.com/

Monday, December 19, 2016

An Early Christmas Present… My PET Scan is Clear

12/19/16 – What better way to kick off the Christmas season than with the news that the PET scan I had today was all clear and that my MCL is still in remission. I met with Dr. Goy today and you can truly see the joy on his face when he is giving great news like this.

Whenever I am asked what I want for Christmas my standard response is always:
Peace on Earth”. Saying this I am thrilled with this fantastic early Christmas present.

Now, I won’t lie… I absolutely love celebrating Christmas. It’s a time to be with friends and family, to spread love and cheer. It is a time for us to rediscover our inner child and a time for charity, kindness, goodness, peace, love and joy.  AND… it is a time to be Santa Claus to others… and Santa, he sure is one heck of a guy… he is really the only folk hero we have who's male, doesn’t carry a gun, and is all about peace, joy, giving, and caring for other people… BUT even Santa would tell you that Christmas is not about him. Santa brings presents to well behaved girls and boys as a reminder of the birth of Jesus Christ.  In truth… Christmas itself is really about a big present that God gave the world over 2000 years ago - Jesus!

I would like to take this opportunity to wish you and your families a Very Merry Christmas and a Happy, Healthy New Year.

As for getting back to my health update… I have my next follow up on January 24th to see where I am with MDS. I also have a follow up PET scan scheduled for June’17.

And back to Christmas cheer… one of my favorite lines from a Christmas movie is when Buddy the Elf says: “The best way to spread Christmas cheer is singing loud for all to hear.” (from the movie “Elf”). Below are YouTube links to some great renditions of Christmas songs that you are sure to Enjoy.

“Heart of Christmas” by Matthew West

“Jingle Bell Rock” by Jeremy Camp

“Noel” by Chris Tomlin featuring Lauren Daigle

“God Rest Ye Merry Gentlemen” by Mercy Me

“Joy To The World” by The David Crowder Band
  
“Angels We Have Heard On High” by Third Day

“Go Tell It On the Mountain” by Pentatonix

For today in the city of David a savior has been born for you who is Messiah and Lord.
And this will be a sign for you: you will find an infant wrapped in swaddling clothes and lying in a manger.” And suddenly there was a multitude of the heavenly host with the angel, praising God and saying: “Glory to God in the highest and on earth peace to those on whom his favor rests.
Luke 2:11-14

More to come…

http://mantlecell.blogspot.com/

Wednesday, December 14, 2016

A Cure for Clara – GM1 another terrible disease that impacts little children

12/14/16 – I typically keep my posts on this blog to my health journey but I did want to share a story of my little cousin Clara and the incredible challenge she faces with a disease called GM1. During this holiday season, it is hard to not think about my cute little cousin and the battle that her and her family is going through to get a cure for her. This is a rare progressive disease that is curable… but it is not cheap and any help you can do by sharing her story is greatly appreciated. And donating to her cause… every little bit helps. No donation is too small. 

My holiday wishes, hopes and prayers are with my cousins Jenny and Ryan (Clara’s Mom and Dad) and Melinda (Clara’s Grandmother) and most of all Clara...that they get everything they need to move forward with getting this beautiful little girl cured. 

Take a look at this video. It gives a wonderful view into this beautiful family. This YouTube Video is called “Bragg Family Video - For Clara” and here is a link to it: https://www.youtube.com/watch?v=xu9adb7E39o

Also, here is a link to a Clara’s website: http://acureforclara.com/

Behold, children are a heritage from the Lord, the fruit of the womb a reward.
Psalm 127:3

More to come…

http://mantlecell.blogspot.com/

Sunday, November 27, 2016

3 Years Since My SCT... and YES, I Would Do It Again

11/27/16 – Today marks 3 years since my stem cell transplant. Among us SCT recipients we consider this our new birthday and it is something that should be celebrated. But more important… and a question that I often get asked… Do I think my SCT was worth the time and effort… if I think it actually worked?

True, I did have a relapse afterwards. And yes, I had to have chemo in 2015 to address my relapse… But there is one thing that jumps out at me about my SCT that makes we think it was a huge success…

After my chemotherapy treatments were complete I still had signs of Mantle Cell Lymphoma. My chemo was followed up with a DLI (Donor lymphocyte infusion). The goal was to booster my immune system… to help kick it into gear where it could better fight my health woes.

With my first scan after the DLI it was found that I was in remission… this was without additional chemo… Just the work of my immune system. So, could this be because my new immune system was working? Could this be because my SCT was a success?
I am no doctor and I am by no means a medical expert but I truly believe that my current remission is due to the success of my SCT. So… YES, I do think my SCT worked and was worth the time and effort.

Recently I learned that tests show that I am still 100% of my donor. Here I am 3 years into my SCT and it is still working. Today is truly a day to celebrate for me and my family.

Today also marks the first day of Advent. This is a time that we not only prepare to celebrate the birth of Jesus Christ but it is also a time when we prepare for him to come again.

Here is a great song to help us kick off Advent. It’s called “O Come O Come Emmanuel” and it is by Matt Maher
Enjoy!!!

Therefore, stay awake! For you do not know on which day your Lord will come.
Be sure of this: if the master of the house had known the hour of night when the thief was coming, he would have stayed awake and not let his house be broken into.
So too, you also must be prepared, for at an hour you do not expect, the Son of Man will come.
Matthew 24: 42-44


More to come…

http://mantlecell.blogspot.com/