T Minus 4 Days Til' Transplant

11/22/13 – So I did make it into the hospital last night. I was in my room at about 7PM. To keep things on track I settled in quickly, was given some pre-chemo drugs followed by IV doses of Fludarabine and Cyclophosphamide. I will get both of these again today.

So far I am feeling fine. The nurses here on the transplant floor (9^th Floor, Pavilion East) of Hackensack University Medical Center are simply awesome. And as far as it goes with Dr. Rowley, the more I see him the more I like him. Also his team is just great.

I did decide to bring a small travel guitar. I have already had it out to help time pass. I think this was a good move.

I had a few visitors from the hospital staff. The nutritionist stopped by to review how they work. Being an old pro here, I am very familiar with how this works. My personal eating challenge centers more on smells versus the taste of the food. As soon as I pick up a bad smell I lose my appetite. The one smell that gets me is the smell of plastic. The food is typically transported to the rooms in a plastic serving dish with a cover. When the cover is removed, the first smell that is released is the hot plastic. After explaining this to the nutritionist she said I could request that my food be wrapped in aluminum foil. This will help me a lot. It just shows you how accommodating they are here.

I also met with one of the resident Catholic Priests. He offered to help me in any way that I need. He gave me the televised mass schedule and will be stopping by periodically to bring me Communion.

On a personal note… Both my daughters (Jill and Alli) have made the cast of the 2014 tour of “Bring it On – The Musical” which will travel throughout the US and some parts of Asia (mostly Japan). I am so proud of them. Their tour schedule has them in New Jersey (my home state) in May of 2014. I am thinking I can make this. This is certainly something I will shoot for.

O come, let us sing unto the LORD: let us make a joyful noise to the rock of our salvation.

Psalms 95:1 

More to come…

http://mantlecell.blogspot.com/

T Minus 5 Days Til' Transplant

11/21/13 - Yesterday I had my triple lumen installed. It was a very quick procedure that left me with 3 tubes sticking out of my right shoulder. After a few hours I already forgot it was there. This should go a long way in saving my veins while I am in the hospital.

Speaking of the hospital, I get admitted today. I just have to wait for the hospital to contact me that they have a bed available for me. I will start chemo today when I get to the hospital

In a strange kind of way my biggest concern is keeping myself from being bored for the time (about a month) I am in the hospital. I am very confident that all the medical stuff will go great with the wonderful team of doctors I have. To keep myself occupied I will bring a computer and ipad and I am still debating with myself on if I should bring my travel guitar with me. I do remember from when I went through chemo last time (in 2008) that playing the guitar kept my fingers from experiencing neuropathy. This may be a medical study I need to pursue in the future.  

Similar to last time, I have been asked to bring workout cloths. Keeping me active during my stay in the hospital is considered a critical part of getting me on the path to good health.

So I guess my new journey really starts today. I am feeling very positive and exciting that this will lead me to getting my life back.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Jeremiah 29:11

More to come…

http://mantlecell.blogspot.com/

T Minus 13 Days Til' Transplant

11/13/13 - What a difference a day makes. I am really feel so much better. If you could believe it, I ever feel like I have more energy than I did before my fevers.

Today I had my dose of Rutuxan as an out patient. The does was proceeded by a dose of Benadryl. Boy does that stuff knock you out. I pretty much slept through the entire Rutuxan infusion. 

I am still feeling great, just a little drowsy. 

Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.”
Matthew 11:28 

More to come…

http://mantlecell.blogspot.com/

The Long and Winding Road... begins

As I said with my last post, my transplant was moving forward. An unrelated near match has been identified, contracted and has agreed to be the donor. The match is a near match (8 of 10) but the areas of mismatch are not one that are of concern for my doctors. We have come up with a plan that we are in the process of executing one thing at a time. One of the early tasks was to get dental clearance. 

11/1/13 – At my dental clearance appointment I was found have two teeth in question. One that possibly needed to be pulled.  I was able to get an appointment with an oral surgeon on 11/4.

11/4/13 – at the appointment with my oral surgeon it was decided that the tooth needed to be pulled. After consulting my oncologists and transplant doctors, the oral surgeon was given to go ahead to pull the tooth. This ended up being the correct decision being a fairly large infection was found at the root of the tooth. Also on 11/4 I went back to my dentist and had a tooth filled.

11/5/13 - I had my visit with Dr. Feldman of the The John Theurer Cancer Center with I continue to receive positive results. I was given the OK the begin cycle 12 on Ibrutinib.

11/6/13 – I went to work and had a fairly normal day but at the day went on I began to feel like I had the chills and had a bit of a headache.

11/7/13 – At around 2:00 AM my wife noticed I had been sweating heavily. She took my temperature and it was 103.7. She immediately called The John Theurer Cancer Center. She was told to give me Tylenol and if my temp didn’t come down to bring me to the emergency room at Hackensack University Medical Center. The Tylenol worked. I went to my family doctor, Dr. Eric Hansen and he gave me a thorough exam and put me on a stronger antibiotic. In addition he ordered a chest x-ray and blood tests. We had the x-ray right away (which came back clear) but were not able to get the blood test done being we had to head off the Hackensack to meeting with Dr. Rowley, my transplant doctor, to review a number of things for the transplant. Knowing about the fevers, Dr. Rowley made sure all the blood tests were completed plus he had some additional tests run(all test were negative). When I left Dr. Rowley my temp was normal but I did feel like I have the chills.

11/8/13 – At around 12:30 AM, my chills had gotten worse. My temp was 103.3. My wife called the Cancer was told to bring me to the emergency room. The emergency room again put me through a battery of test and I was official admitted into the hospital a few hours later. I was put on broad span IV antibiotics. Dr. Goy came to visit me in my room to examine me. He ordered a CT of my head (which came back negative).

11/9/13 – The trend of having a high fever in the early AM continued. At about 2:00 AM my temp was 103.3. I was given Tylenol and it brought my fever down. I went for a PET scan in the late morning, I was feeling pretty good. When I returned my fever was normal. Over the next few hours I remained that way. At 10:00 PM my temp was 98.9.

11/10/13 - I was wondering what my temp would be at 2:00 AM. Well, 2:00 came and went but I slept right through it. I guess the nurses didn’t want to awake me. At 4:00, the time when they come and take my blood, I had asked for my temperature to be taken. It was 102.7. Not 103… but not what I wanted to hear. I had a good day. As the night nurses are coming into work I am taking a pool as to what my temperature will be at 2:00 AM. By the way… the nurses here at Hackensack University Medical Center are awesome.

11/11/13 – My temp was 99.0 at 2:00 AM. This was great news. I felt strong all day. When I met with Dr. Mateo he said I should be able to go tomorrow.

11/12/13 – My Temp was 99.0 again at 2:00 AM and 98.4 at 7:00 AM. And truly am ready to go home today. I think this storm has past. Hopefully this is not a sign of things to come. Maybe it was God’s way of putting me through some marathon training as my transplant approaches.

Did the dental work have something to do with the fevers? I don’t think we were able to prove that one way or the other. It does make sense that if an infected tooth is pulled that maybe the infection could get into your system. I guess the lesson learned here is that next time to prepare for a transplant I will not take the dental piece so lightly and get it covered much more in advance.

So what does this all mean from the prospective of my transplant? How does it impact my transplant? Maybe not at all. At this point all our plans for transplant are still on. The plan is:

11/13/13 – Receive Rutuxan as out patient

11/18/13 – I go to a transplant class

11/20/13 – Catheter installed

11/21/13 – I’m admitted into the hospital for chemo

11/25/13 – The donor makes the donation

11/26/13 – The stem cell transplant happens

So my new journey has begun. I look forward to telling you about it.  

No evil shall be allowed to befall you, no plague come near your tent. For he will command his angels concerning you to guard you in all your ways. On their hands they will bear you up, lest you strike your foot against a stone.

Psalm 91:10-12 

More to come…

http://mantlecell.blogspot.com/

Remission Accomplished Again… Transplant is Next

10/8/12 – Today I met with Dr. Goy for my normal cycle follow up and to review the results of a PET scan I had last week. Dr. Goy said: “You are in full remission…. This makes me very happy”. After a couple of moments of silence he then said, looking at the research nurse, “So where are we with the transplant?”

10/28/13 - From that question until now the entire process has really accelerated. It is looking like the transplant with begin within the next couple of weeks.

Although my daughters and brother did not pan out as being good donors (even as half matches) there have been two near matches found. This mismatch part is in areas where it is not seem as being critical. With this being said, a request for donation has been made. Assuming the donor says yes and gets through the pre-testing… it sure looks like I will have my transplant before Thanksgiving.

To prepare for this I have a dental appointment scheduled for October 30^th to make sure I have non issues with my teeth. On Friday, November 1^st I will go through all my work up tests at Hackensack University Medical Center. On Tuesday, November 5^th I have my normal cycle visit with Dr. Goy. On Monday, November 11^th I have a Transplant Class where I will get an education on what I am really getting myself into. According to my Transplant Coordinator, this is a very good chance I will be in the hospital before November 11^th. On top of that I have begun getting all the other details of my life in order (leave from work, etc…).

The way it works is that once the donor is fully committed to provide me the gift of his bone marrow and a date to extract the bone marrow is set, we need to count back about 9 days. That will be the day I check into the hospital. I will get chemo for about 8 days and on the very next day the bone marrow will be infused.

I just know that everything will work out for me.

This bring me back to a prayer that my pastor taught me back in 2008:

"Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace"

All the battles of my life are the Lord’s. As I stand in faith, He fights them for me. 1 Samuel 17:47

More to come…

http://mantlecell.blogspot.com/

I wanna get lost in your rock and roll and drift away

9/30/12 – Today was the 5^th Annual Celebrate Life and Liberty event hosted by the John Theurer Cancer Center at Hackensack University Medical Center. It seems that every year this gets bigger. The event is intended to celebrate survivorship and give inspiration and support to those in the cancer community who are still in treatment or recovery as well as all of our care givers who, to say it simply, are blessings from God.

There were 3 featured acts who entertained a crowd of about 5,000. The entertainment was kicked off by Quixotic an ensemble of artists from various disciplines including aerial acrobatics, dance, fashion, film, music and visual f-x. There were followed by The Village People, famous for hits like “YMCA”, “Macho Man” and “In the Navy”. The BIG show ended with Gloria Gaynor who inspired the crowd with her “I Will Survive”.

In addition to the stars, a number of survivors provided entertainment. I was deeply honored to be asked to perform. I, of course, pulled my daughter Alli up on the stage with me. We are by no means professionals but we put our hearts into a song called “Drift Away”. Below is a link to us performing. I hope you enjoy it. We certainly had a blast doing it.

Me introducing "Drift Away"
http://youtu.be/kOdwHVHGr8s

Me and my daughter performing "Drift Away"

http://youtu.be/Q91Gkjfak04

In addition, here is a link to The Village People's performance of "YMCA" 

http://youtu.be/b4REX2yuOSQ

Lastly, here is link to Gloria Gaynor singing "I Will Survive"

http://youtu.be/UMZksYtompM

Make a joyful noise to the Lord, all the earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.
Psalm 100:1-5

I will provide an update once I know more about my transplant

More to come…

http://mantlecell.blogspot.com/

Star of Ibrutinib

9/24/13 – I had my 3rd set of scans yesterday (I get scanned after every 3 cycles or every 63 days) and I met with Dr. Mateo today to get my results. As with the last time I met with Dr. Mateo, he started with a comment that brought a big smile to the faces of my wife and me. “You are the star of Ibrutinib.” My Mantle Cell Lymphoma is now considered reduced by 100% . I just cannot put into words how thrilled I am.

So, what’s next? Well the stem cell/bone marrow transplant is looking more and more like a reality and, my guess is, it will be sooner versus later. With my MCL reduced to nothing, it is the perfect time to begin the transplant process. BUT, there is still a major obstacle to pass. I must be a little too unique because so far we have still not found a full match. In order to move things forward the transplant team is now looking in another direction to find me a donor. It is called a “Tier Preferred Half Match.” I do have two daughters who are certainly half of me. In addition, one of my brothers is a little better than a half match. We will be testing all three who is the best of the Tier Preferred. I am not an expert on this but my understanding is that we will select the person who has different “T” receptors on the natural killer cells. We should know who my best donor option is within the next 2 to 3 weeks.

I often get asked the question: “if the study drug is working so well why you still need a transplant?” This is an excellent question and believe me I have asked my doctors it many times. It all comes down to the fact that no one is sure how long the Ibrutinib will work. If this was 5 years from now I would possibly do things differently… but it’s not. I have to make the decision based on what we know.  I am a young 52 year old and I certainly have many things I still want to do. I will go with whatever gives me the best chance of a long life.

 To change gears… This Sunday, September 29^th is the 5^th Annual Celebrate Life and Liberty event at Liberty State Park. This is an event that is sponsored by the John Theurer Cancer Center at Hackensack University Medical Center and of course Dr. Goy will be up front with, cancer coach, Sharon Parker MC-ing the event. The special performing guests will be Gloria (I Will Survive) Gaynor, and the Village People. In addition, my daughter Alli and I will be up on the stage performing a song as we did at last year’s event. It is sure to be a blast. I can’t wait to tell you all about it.

“A Psalm for giving thanks. Make a joyful noise to the Lord, all the earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.” 
Psalm 100:1-5

More to come…

http://mantlecell.blogspot.com/