A GVHD Sighting

12/17/15 – I had my follow up appointment at the Cancer Center today and, believe it or not, I am showing some signs of a GVHD rash. My forehead, cheeks and neck are the most impacted areas. I will have to say my neck is the worst part because it is so darn itchy. The plan is to hold off on DLI for a few weeks to see if the rash will move to my whole body. If it does, it is not likely I will need another DLI anytime soon. Also it will mean that my GVHD will need to be treated. When and if, the full rash appears I will be prescribed prednisone.

Another big event of today is that we resumed my immunizations. I received 5 shots which included DTap, Hib, Hepatitis B, Polio and PCV13. These were all scheduled as 15 month immunizations. I guess it’s better late than never. The good news is I am getting back on track with the SCT plan from 2013.

Lastly, I have been contacted by  Bristol-Myers Squibb this week to advise me that they received all the paper work from our appeal. They will be reviewing it to see if they can approve me. I should hear back from them within a week.

All and all this was a great day. I am looking forward the a great Christmas and Holiday season.

Here is a link to a great song by the David Crowder Band call “Go Tell it on the Mountain”.  https://www.youtube.com/watch?v=8uY7W1kYlX4

Also here is a link to Matt Maher singing “Silent Night”.

https://www.youtube.com/watch?v=hAxgOvJh-Tg

This should help get you in the Christmas Spirit. Enjoy!!!

For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace.

Isaiah 9:6

More to come…

http://mantlecell.blogspot.com/

A Time to be Thankful

11/25/15 – Last year on Thanksgiving Day I celebrated my 1 year anniversary of my stem cell transplant. As I approach my 2^nd anniversary (or what many consider my 2^nd birthday) it is very clear that so much has happened over the past year. Yes, I relapsed… Yes, I had challenges handling my chemo therapy… and Yes, I am still waiting for any type of sign that shows I have an immune system that can fight my mantle cell lymphoma if it tries to come back again.

BUT… I am alive to fight another year… and although this past year has been a road full of many bumps, there were also many fantastic times along the way. And Yes, although there were times that I was sick and weak from treatments, it was always amazing how my family and friends were always there for me, my wife and my daughters.

And with all this said, I am in full remission, I have returned to work and I am living my life as a happy and healthy person. It is times like these that makes you appreciate each day as a wonderful gift. It is important that we live life a day at a time… better yet, we live life a moment at a time… making the best of each moment.  

I am truly very blessed to have such a loving and supportive wife… and daughters who are willing to drop everything and be by my side. I certainly have a life where I am surrounded by love. True I have been fighting MCL for over 7 years, but I can say without any hesitation that God has been very good to me. I have so much to be thankful for.

I would like to wish everyone a very Happy Thanksgiving to you and your families.

God truly loves us all. Here is a link to a song called “How He Loves” by the David Crowder Band that I think you will enjoy.

https://www.youtube.com/watch?v=2FxaUYjRtkc

Come, let us sing joyfully to the LORD; cry out to the rock of our salvation.

Let us come before him with a song of praise, joyfully sing out our psalms.

For the LORD is the great God, the great king over all gods,

Psalms 95:1-3

More to come…

http://mantlecell.blogspot.com/

I finally had my 2nd DLI today

11/12/15 – After a few delays, I finally had my DLI today. The plan is to wait 4 weeks to have a follow up appointment being it typically takes 4-5 weeks to see any impacts of the DLI. My next appointment is scheduled for December 10^th. If at that point there are no signs of GVHD, then another DLI will be scheduled. If there are signs of GVHD, then the GVHD will be treated. Once GVHD has successfully been treated then another DLI will be scheduled. This pretty much an ongoing process that will be followed until my immune system and my body come to terms with each other. It will probably take a long while before I get there. In the meantime, the hope is that my agitated immune system will be able to fight out any new MCL that comes its way. I sure know this is confusing stuff. Dr. Rowley does the best he can to explain everything to my wife and I. At the end of the day I have totally trust in him and his team.

Along with our busy DLI Day, today we handed in all our paper work to the oncology team to appeal denials from my insurance company (Aetna) and the drug company (Bristol-Myers Squibb) for a PD-1 drug called Opdivo (nivolumab). Our hope is that I finally get approved and that we add it to our arsenal of treatment options. We have certainly heard great things about this drug. 

“For God shows no partiality.”

Romans 2:11

More to come…

http://mantlecell.blogspot.com/

More Obstacles Present Themselves

11/6/15 – My DLI has been rescheduled for Monday, November 9^th. Unfortunately I am running a high fever (102ish). I also have a sore throat and cough. If I cannot get well it is very likely that my DLI will need to be delayed yet again. 

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.

James 1:12

More to come…

http://mantlecell.blogspot.com/

DLI Put On Hold

10/26/15 – Today I went to The John Theurer Cancer Center at Hackensack University Medical Center for my DLI and believe it or not we were not able to go forward with it. I have had an eye irritation over the past week and apparently dry eye is a possible symptom of GVHD. Although it is not a strong enough reaction to know it is definitely GVHD, Dr. Rowley decided it would be best to wait and see what develops over the next week. I innocently asked “what’s the harm if I had the DLI even though there may be a GVHD response developing?” Dr. Rowley’s answer was extremely “eye” opening. He said “its like throwing gasoline on a fire.” All I can say is YIKES!!! I guess it is an excellent idea to wait and see if a rash or any other GVHD symptoms show up over the next week.

I was able to schedule an appointment with an Ophthalmologist. After a thorough eye examination is was found that I had a slight case of dry eye in addition an eye irritation. I was prescribed an eye salve that should address the irritation and some eye drops that should relieve any burning and itching I have in my eyes.

We have rescheduled an appointment at the Cancer Center for Monday, November 2^nd. If GVHD does not make a stronger appearance at that point we will then go forward with the DLI. In addition I have a follow-up with the Ophthalmologist on Tuesday, November 2^nd.

So it is back to waiting and watching… Saying this, I am feeling great and thrilled to be headed in the right direction. I am so blessed to have such great family and friends who have been so very supportive and who have provided their non-stop prayers for me to get well.

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

Matthew 21:22

More to come…

http://mantlecell.blogspot.com/

Remission Accomplished!!! … Again!!!!

10/13/15 – On December 12^th 2008 I reported that I had achieved remission. On October 28^th 2013 I again reported that I had achieved remission. Today, October 13^th 2015, after meeting with Dr. Goy, I am again happy to report that I am in remission from my Mantle Cell Lymphoma.  All I can say to this is: REMISSION ACCOMPLISHED!!!! …. AGAIN!!!!

Will this third time be a charm for me? I certainly hope so. One way to help ensure that I stay in remission would be to make sure my immune system is strong enough to fight off disease. At this point in time it is not believed that my immune system is strong enough. This is where Graft Versus Host Disease (GVHD) comes into play. GVHD is the evidence we are looking for to show that my immune system has the ability to ward off any and all outside illnesses, infections, diseases, etc... Unfortunately since my stem cell transplant, back on November of 2013, I have never developed any sign of GVHD. We again tried to force GVHD by having a DLI on August 3^rd but that too appears to have failed in getting any GVHD. Our current plan of attack is to attempt to bring on GVHD by having another DLI on October 26^th. GVHD reveals itself in the form of a rash. As strange as it may sound we are praying for me to get a rash.

During my appointment with Dr. Goy today he mentioned that he will also be looking give PD-1 another try. It seems that it is starting to be used and be more accepted as a treatment for Mantle Cell Lymphoma. He feels more confident that he can get me in a trial/study as well as getting it approved through insurance. If this does happen I will be getting PD-1 treatments once every two weeks… more to come on this.

Up next for me… I have a follow-up/pre-DLI appointment with Dr. Rowley, my transplant doctor, on Thursday, October 22^nd. The DLI will follow on October 26^th.

So… it sure feels like everything is headed in a very positive direction for me. I truly feel that Jesus has wrapped his healing arms around me and he just won’t let go.

Here is a YouTube link to great song by Matt Redman called “You Never Let Go”. Enjoy.

https://www.youtube.com/watch?v=76ifTTuL4XI

Then they cried to the LORD in their trouble, and he saved them from their distress.

He sent forth his word and healed them; he rescued them from the grave.

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.

Psalm 107:19-21

More to come…

http://mantlecell.blogspot.com/

Initial PET Scan Results Looking Good

10/2/15 – On Thursday, October I had a PET scan. I followed up with the Cancer Center on Friday, October 1^st. Although I know Dr. Goy is not available until October 13^th I really wanted to get an idea of what the results were so I called the Cancer Center and spoke to one for the nurses from the Lymphoma Team. The nurse was able to tell me that there was a great improvement from my last PET back in July but was unable to get into the specifics. She would really need Dr. Goy to interpret the results. I passed on the good news to my nurse practitioner from the Transplant Team. I heard back from her with a more details about the scans. This included the following:

Reviewed the results and I was much more impressed with what I read than what you wrote. There was RESOLUTION of FDG uptake in the mediastinum (chest) and the soft tissue mass was decreased in size… Previously in the chest the avidity had an SUV of 18.1 then 7.7 now NOT MEASURED AS ACTIVE, resolved… this is AWESOME!!!!!!!!

This sure is sounding like very good news. When I meet with Dr. Goy on October 13th I will learn more about what this all means.

I still have not had any signs of a GVHD rash. If this continues I will have a 2^nd DLI the week of October 26.

Over all it is looking like I am headed in the right direction. God is Good! God is Great!

Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you

Exodus 23:25

More to come…

http://mantlecell.blogspot.com/