Transplant Consultation

3/27/13 – I had two appointments at Hackensack University Medical Center. My first one was a follow up with Dr. Jenifer L, Marks to see how I am doing from the surgical biopsy. All has healed well. I again want to mention that Dr. Marks was a highly competent doctor with an extremely pleasant and compassionate approach with her patients.

My second appoint of the day was at the John Theurer Cancer Center with Scott D. Rowley M.D. for my transplant consultation. Dr. Rowley is member of the Blood and Marrow Transplantation Program at the Cancer Center. The consultation lasted 3 hours. I must say that all the information we received was a bit overwhelming. My wife and I received a very detailed education on the process. On top of our discussion we were given a book to read titled: Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients and Their Loved Ones by Susan K. Stewart. The book covers transplants from soup to nuts. It spans from the planning process and finding a donor through living life after your transplant.

For me, the first step will be for my Transplant Case Worker and Transplant Insurance Coordinator (which are provided by the Cancer Center) to get the ball rolling by contacting my insurance and getting the authorization to start the process.

Once this is done I will be asked to provide the contact information for my siblings. What this means is that I will be getting an Allogeneic Transplant. With this the stem cells or bone marrow will come from a donor. The reason I am not getting an Autologous Transplant (which would be transplanting my own bone marrow) is that we basically have two goals with the transplant. 1. Eliminate Mantle Cell Lymphoma from my system.  2. Provide me with a new, uncompromised immune system. By getting someone else’s healthy bone marrow, it will see any remnants of my MCL as foreign cells and attack and kill them.

An interesting thing I learned was that donors need to be a tissue match with me. I had thought they had to be a blood type match, but this is not true. Actually if the donor’s blood type is different from mine, after the transplant my blood type would change to be the same type as the donor.

There is a 1 in 4 chance that my siblings are a match with me. If they are not a match there is a Bone Marrow Donor Registry that will be searched. As a 3^rd option, my daughters could be donors. This would be what is considered a “half match”. There are some complications with this but it has become more and more popular over the past year.

Once the up front leg work is done and a donor is found we then are in a waiting game. We will see how effective my Ibrutinib treatments go. Assuming all goes great; Dr. Goy will give Dr. Rowley the go ahead with the transplant. The transplant will require me to get some chemo therapy/radiation to knock out my own immune system. I will then get the transplant. I will need to be in the hospital for about 3 ½ weeks. Once I get to go home I will need to be isolated for another period of time that could span from 3 to 6 months.

All I can say is WOW!!!! This was an awful lot to take in. And there is much I left out (such as  all the risks that come with a transplant). At the end of the day I can will listen to the experts and do what they think is best for me. But what I really need to do is to put this in in the hands of God.

"We put everything into the hands of God."

2 Corinthians 1:9

More to come…

http://mantlecell.blogspot.com/

My First Week Taking Ibrutinib

3/25/13 – Today marks one full week that I have been taking Ibrutinib. I can say without any hesitation that I have experienced no side effects. I feel great, have plenty of energy, my appetite is great (maybe too good), and there are no changes to my appearance (like loss of hair).  I am extremely encouraged by all of this and I am looking forward to hear about how effective this new drug is with eliminating my mantle cell lymphoma. I am thinking it will be a good month, or so, before I get an update on this.

I have been doing great with my new regiment. I take my 4 pills at 5:30 AM and then exercise for a half hour before breakfast.

On March 27^th I have my consultation on my bone marrow transplant. I am looking forward to learn more about this.

And we know that God causes all things to work together for good to those who love Him, to enable them to fulfill the purpose for which they are called.

Romans 8:28

More to come…
http://mantlecell.blogspot.com/

What better gift could I have asked for?

3/17/13 – Today is my birthday. I was at a Saint Patrick’s day Dinner at my church last night with my wife, daughters, their boyfriends and many good friends. Today we will have family over for more celebrating. I must say that I had a fantastic birthday.

One gift I received was a saint metal on a chain. The saint is Saint Peregrine. I had heard a little about this saint from a friend but my wife Sue thought I should have his metal. Here is a little background on Saint Peregrine:

Saint Peregrine Laziosi was born in 1260 at Forlì, Italy to an affluent family. He lived a comfortable life as a youth, and politically opposed the papacy. Once, the pope sent a special representative to Forli to preach a sermon and try to win the people's hearts over to God. This representative was a saint called Philip Benizi. Saint Philip preached to the crowd. At first, things went well and the people listened. Then, Peregrine showed up with his gang of troublemakers and they drove Saint Philip from the pulpit. Peregrine went further than all of them and slapped Saint Philip in the face. Saint Philip offered the other cheek and forgave him. Peregrine was so full of remorse that he went back to Saint Philip and apologized. After he experienced the forgiveness of St. Philip Benizi, he changed his life and joined the Servite order.  He was ordained a priest, and later returned to his home to establish a Servite community.  There he was widely known for his preaching, penances, and counsel in the confessional. 

He spent more time in prayer. Mary once appeared to him and directed him to go to Siena. There he joined the Servants of Mary or the Servites. The superior who received him was Saint Philip Benizi. There he did penance for his sins. One of the special penances he decided on was to stand whenever it was not necessary to sit. It is said that St. Peregrine did not sit for thirty years, which caused him to develop varicose veins and then cancer on his leg and foot. The sores became painful and doctors prepared to amputate his foot, but the night before the surgery was scheduled to take place Peregrine dragged himself to the foot of a crucifix and spent many hours in prayer. When he fell asleep he received a vision of Christ touching his foot. In the morning his foot was completely healed. He is therefore considered the patron saint of those suffering from cancer.

Saint Peregrine’s Prayer: O God, who gave to Saint Peregrine an angel for his companion, the Mother of God for his Teacher, and Jesus for the Physician of his malady; grant, we beseech-Thee,  through his merits, that we may on earth intensely love our holy angel, the Blessed virgin, and our Saviour, and in heaven- bless them forever. Grant that we receive the favor for which we now petition. Through the same Christ our Lord. Amen

What better gift could I have asked for?

3/19/13 – I received my first treatment of cycle 1 today. I basically took my first dose of Ibrutinib which was 560mg. The rest of the day the PK Sampling was conducted.

Cycle 1 consists of 21 days. Once this is done I will start cycle 2 which will be an exact repeat of what I did today. After cycle 2 is completed, the rest of the cycles will also be 21 day but the PK Sampling will no longer be necessary. Cycle 2 is projected to begin on April 9^th. I have also be asked to keep a Patient Diary. I will notate each dose that I have taken with comment on how I feel.

Each dose that I take needs to be at the same time each day. I think it is best to get it over with first thing in the morning. My plan will be to take my dose each day at 5:30 AM. Being I cannot eat for 30 minutes after taking the pills, it looks like I have a great opportunity to get some morning exercise in.

In addition to me starting on Ibrutinib, we are still moving forward with the Bone Marrow Transplant. I have a Transplant consultation scheduled on Wednesday, March 27^th. I am hoping to learn much more about it. My biggest concern is finding a donor. I have many friends and family who all want to fill that role. Hopefully someone will be a match.

Then Jesus said to him, Unless you see signs and miracles happen, you [people] never will believe (trust, have faith) at all.

John 4: 48

More to come…
http://mantlecell.blogspot.com/

First Treatment Scheduled

3/15/13 – I am sitting in the waiting room of the John Theurer Cancer Center a Hackensack University Medical Center. Since my last post I have had an EKG, a PET Scan and a MUGA scan. As I was waiting to see Dr. Goy for my last of the pre-certification tests (the dreaded Bone Marrow Biopsy) a nurse approached my wife Sue and I. She said that Dr. Goy has been delayed due to an emergency that he had to attend to. The nurse immediately raised her hands over her face like I was going to lash out at her(she of course did it with a smile). I think my response surprised her. “Well the good news is that it is not me who needs Dr. Goy urgently”.

I have to tell you that over the years there have been times that it was me who was the reason that Dr. Goy was pulled away from other patients and they had to wait. I cannot tell you how appreciative my family and I were that Dr. Goy was there in a time of urgent need. The way I see it is when you have a doctor who is high demand, these types of delays will happen. If Dr. Goy needs me to wait, I certainly know it is for a good reason. Since I started frequenting the John Theurer Cancer Center, I approach all my appointments with the understanding that I will most like wait. I prepare myself by bring a book, or work from the office or a magazine or … Isn’t it better to have a doctor who is very busy than a doctor who is not busy at all and never makes you wait? OK, maybe I have been drinking the Dr. Goy Kool-Aid for too long but I am pretty sure it is always best to being patient as you wait. Hmmm… Does this mean I am saying we should be patient patients?

Dr. Goy did eventually did get to me for the Bone Marrow Biopsy. I must say that is was not as bad I remember from the last time I had one back in 2008. I have now officially completed all my pre-certification testing and I am ready to start treatments.

My first treatment will be Tuesday, March 19^th.

This treatment will include Pharmacokinetic blood tests. Basically I will be asked for extra blood samples for pharmacokinetic testing known as PK sampling. These blood samples are taken according to certain time points to see how much of the study drug, Ibrutinib, is in my bloodstream. During this period, the study drug levels in my blood will be measured carefully. The total amount of blood drawn for this test will be about 32 mL (about 6 teaspoonfuls).

PK samples will be taken at Pre-dose , 1 hr after dosing, 2 hrs after dosing, and 4 hrs after dosing.

The ill-tempered stir up strife, but the patient settle disputes

Proverbs 15:18

More to come…
http://mantlecell.blogspot.com/

Ibrutinib

3/12/13 – When you are diagnosed with something like High Blood Pressure or High Cholesterol, what happens? Typically you will be prescribed a pill that will take care of this condition. It is very likely that the medication you take for this will be something you take for the rest of your life.

Now picture this… You are diagnosed with some type of cancer; let’s say it’s Mantle Cell Lymphoma…  What happens next? You are prescribed a pill that will take care of this condition. It is very likely that the medication you take for this will be something you take for the rest of your LONG life… Now, how cool would that be?

Today I was at the John Theurer Cancer Center a Hackensack University Medical Center to meet with Dr. Goy and to learn about what treatment options were available to me. Our meeting started with Dr. Goy saying; “Had a slight relapse? No big deal”.  He followed with a quick examination, reviewing the reports, dictating into his mini recorder at the speed of light… and yes with his famous French accent. We then had time to chat about the study. Here are some of the study’s highlights:

The title of the study is:

A Phase 2, Multicenter, Single-Arm Study to Evaluate the Efficacy and Safety of Single-Agent Bruton's Tyrosine Kinase (BTK) Inhibitor, Ibrutinib, in Subjects with Mantle Cell Lymphoma Who Progress after Bortezomib Therapy.

Ibrutinib (PCI-32765) is an experimental drug that is being tested to see if it may be useful in treating relapsed/refractory (where the disease has come back) Mantle Cell Lymphoma (MCL). It is a new drug also known as a ‘Bruton’s Tyrosine Kinase (BTK) inhibitor’. This is an experimental drug that blocks an enzyme that affects how the lymphocytes grow and survive. Blocking this enzyme is a very important mechanism in killing cancer cells. In this study, Ibrutinib is tested to see if it may be useful in subjects with MCL, which has come back after previous treatment, but at the same time, it is being tested in other studies, in other illnesses. 

Early indications show that the Ibrutinib has been very effective with few to no side effects. Other than taking the doses on a consistent schedule each day and having periodic checkups, it certainly seems that people being treated with this drug are seeing awesome results and at the same time are able to live their lives with little to no disruption.

All I could say to that is… WOW! Where do I sign?

As you could imagine, Dr. Goy has had many requests to participate in this study. Knowing this Dr. Goy made sure he reserved me a spot in the study for me. I am so blessed to have a doctor who is truly looking out for me.

So, what’s next? I have to go through a few tests before I begin treatments. Tomorrow I will have a PET Scan and a EKG. On Friday, March 15^th I will have a MUGA Scan and a Bone Marrow Biopsy.

Once this is all done I will be ready for Ibrutinib.

Concurrent with the study treatments we will also begin planning for a Stem Cell/Bone Marrow Transplant. Although this is not part of the study, Dr. Goy would like to move in this direction once the Ibrutinib completely annihilates my Mantle Cell Lymphoma. I will be getting a call from the transplant team over the next few days to get a better understanding of this.

After today I am feeling extremely positive and encouraged.  Could Ibrutinib be the drug that simply gets prescribed to us when we are diagnosed with Mantle Cell Lymphoma? Will it turn our cancer diagnoses into a non-event? I truly pray that this is the case.

  

"Jesus said, "Peace I leave with you; my peace I give you; not as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 

  

More to come…
http://mantlecell.blogspot.com/

My Mantle Cell Lymphoma is Back

3/8/13 – After a few days of recovering from my Thoracoscopy - Video Assisted Thoracic Surgery (VATS), a fancy way of saying "my biopsy", I am still a little sore but it really isn't bad at all. With a snow storm that had dropped about a foot of snow on us I decided, maybe not all that wisely, to go out with the snow blower. I honesty do try my best to be a good patient and not drive my poor wife crazy with worry but there is something very cool about walking behind a big loud machine that throws snow into the next county. Maybe I watch a few to many episodes of “Home Improvement”.  After the driveway was clear I  was able to log into work and get a few things done that were piling up at the office. 

Here I thought my day would pass uneventful, boy was I wrong. 

Later in the afternoon I received a call from Hackensack University Medical Center that I quickly answered. It was Dr. Marks. She let me know that the pathology was consistent with what I had last time. In other words, my Mantle Cell Lymphoma is back. This didn't surprise me in the least. I am pretty sure that I had already come to that conclusion on my own. A few minutes after I hung up from Dr. Marks I received a call from the John Theurer Cancer Center. They wanted to know if I could move my appointment to Tuesday. The reason for this was that Dr. Goy is not available on Monday and he really wants to meet with me. I of course said yes.  This appointment will be on Tuesday, March 12 at 10:00AM.

So, I am officially beginning a new adventure with Mantle Cell Lymphoma. I am sure I will be inundated with much information over the next week. All I know is that I am up for this challenge. I am not bitter, nor am I angry, nor am I mad at God. I am going to take this on with grace, with a positive attitude, strong faith, and with the support of my many good friends and family.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.  

James 1:2-4

My next update will be Tuesday, March 12^th

More to come…
http://mantlecell.blogspot.com/

Biopsy – Take 2

3/4/13 – I arrived at Hackensack University Medical Center at 5:30 AM. I moved through the registration process very smoothly and I was soon ready for surgery. The basic questions of: “What is your name? What is your birthday? What are you having done today?” were asked over and over, as they should be. Before I knew it I was in the operating room with Dr. Marks. I do recall the anesthesiologist saying something about beginning… The next thing I remember was being in recovery.

Dr. Marks was able to get to the mass, which is located in my right hilum area of my chest, by collapsing my right lung. She was also successful in getting the samples of the mass that Dr. Goy requested. Preliminary evaluation of the mass is that it does appear to be lymphoma. The pathology analysis that will follow will determine what kind it is. Now, I am not a betting man but with this be the same location as one of my past tumors I would think the odds are pretty high that this will be Mantle Cell.

I was moved from recovery to my hospital room. I was a little surprised that it is a private room that was labeled isolation. I guess this goes back to my past treatments from about 4 years ago when I had many infections (E coli, Cellulitis, C diff, VRE, and Microbacterium Fortuitum Complex). Apparently I was never cleared for my VRE. Until this happens I will have to be kept isolated whenever I am in the hospital. I guess when I have a longer stay planned I should try and take care of this. For now I will gladly accept the private space.

3/5/13 – I awoke feeling a little stiff but no pain to speak of. Today’s agenda is to have my chest/drain tube removed, get an x-ray to show my lung is at full capacity and go home. Dr. Marks met with me a and was happy with how I was breathing and that I was managing my pain well. Based on this she removed the Chest Tube. It was a complete nonevent. It didn’t feel a thing. Next on my itinerary was to get my chest x-ray. This also was done fairly quickly but the results showed that the lung was not fully inflated. This meant I had to stay another few hours and have it checked again. When I was x-rayed a few hours later all was good and I was allowed to go home.

I won’t lie to you, I was not surprised that the mass appears to be lymphoma and I certainly won’t be surprised if it is determined to be Mantle Cell. I am feeling very confident that I will once again beat whatever it is. I have great doctors in whom I have enormous trust in (Dr. Goy and Team). I have a great support network of friends, family, 2 fantastic daughters and a wonderful wife. And I do have a strong faith in God.

I received a call from my pastor today. He reminded me of a prayer to say:

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

These are powerful words when you truly believe in them. These words often carried me through tough times in the past and will do so again.

The next step for me is that I will meet with Dr. Feldman on Monday, March 11^th the get the full report. I am pretty sure I will get answers to things like: What type of lymphoma? How aggressive is it? Etc… My guess is that I will also be presented with what my treatment options and I based on past discussion with Dr. Goy I will be given an opportunity to join a new study group. Without reading a word of the study documents I already know that I will join. It is rare that you are given a chance to help yourself and at the same time help others. I, by no means am person who is smart enough to cure cancer but how cool is it that maybe someday I could say, or my daughters could say, or my grandchildren could say… he “helped” cure cancer.

My next update will be Monday, March 11^th

And let us not lose heart in doing good, for in due time we shall reap if we do not grow weary.  

Galatians 6:9

More to come…
http://mantlecell.blogspot.com/