4 Years Since My SCT… Feeling So Thankful

11/23/17 – It is hard to believe that on November 27^th it will be 4 years since my stem cell transplant. I was really hoping that I would have something profound to share with you… something life changing… BUT to be completely honest my life has been extremely boring… and that is AWESOME!!!!

What I can say is that I love the time of year that my SCT “Birthday” and Celebration falls. It is a time when we give thanks for all we have… and I truly have so much to be thankful for… my family, my friends and I am just so THANKFUL for the great health that I have been blessed with. I just feel fantastic, strong, and all of my ailments have disappeared.

If there is anything I would like to pass on to you is that it is good to be alive. With my 9 ½ year journey I have truly learned to not take life for granted and to make the most of each moment that God has gifted me with. Here is a link to a great song that help bring home this point. It is called “Good To Be Alive” by Jason Gray.

Enjoy!!!

https://www.youtube.com/watch?v=4omFQJEAAVc

Happy Thanksgiving!!!!!

My next follow up with my transplant team is November 30^th and my next scans are scheduled for December 6^th.

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind, for he satisfies the thirsty and fills the hungry with good things.

Psalm 107:8-9

More to come…

http://mantlecell.blogspot.com/

A Happy 9 Year Anniversary

7/17/17 – On July 17^th 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 9^th 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 9^th Anniversary, here is a YouTube link for the Elton John classic “I’m Still Standing”. Enjoy!

https://www.youtube.com/watch?v=ZHwVBirqD2s

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

https://www.youtube.com/watch?v=uiCRZLr9oRw

Cast all your anxiety on him because he cares for you.

1 Peter 5:7

More to come…

http://mantlecell.blogspot.com/

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 20^th 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 6^th – CT Scan

July 11^th – Follow up with Transplant team

July 13^th – Follow up with Dr. Goy

July 20^th – 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/

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 20^th 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 11^th.

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!!!

https://www.youtube.com/watch?v=mfnUOs6edEI

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/

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 18^th.

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!!!

https://www.youtube.com/watch?v=7mMbejF1iVo

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/