4th Cycle with a side of DLI

8/8/15 – On Monday, July 27^th I started my 4^th cycle. I had my additional treatments on the 28^th and the 29^th. According the Dr. Goy this should be my last cycle of RBAC. I am very hopeful that I will be able to avoid any hospital time. As we approached the later part of the week I was feel tired and weak.

On Monday, August 3^rd I had my first ever DLI (Donor lymphocyte infusion). The goal with this will be to booster my new immune system. We are looking to get some signs of GVHD (graft versus host disease). It could take as much as 7 to 9 weeks before we will see any impacts of the DLI. One impact we did see right away is that it made me smell bad. I smelled like cream corn for a couple of days. By the way, did I ever tell you how much I hate cream corn?

On Wednesday, August 5^th I had a follow up to check my counts from the prior week’s chemo. As with my first three cycles, all my blood counts had crashed. I was given platelets because there were at 12. My WBC counts were 0.6.

On Friday, August 7^th, I again was at the cancer center for another follow up. Again my counts were very low. My WBC count was 0.9 and my platelets were at 18.  I was given both blood and platelets. The plan is for me to have another follow up on Monday, August 10^th.

So… the good news is that I have managed to stay out of the hospital. I will say that I have had fevers over the last few days that were at or above the 100.5 mark. What I have been doing… which is probably not the right thing, is to give it a half hour and check it again. Each time my temperature had fallen back below the 100.5. YES, I know I am told that I need to call right away once I hit 100.5 but I much prefer to deal with the cancer center during the day then the ER at night. This probably falls under the “do as I say, not as I do” category. Truly if you run a fever of 100.5 while in treatment you should call into the cancer center (or on call doctor) and follow whatever instructions are given to you.

The bad news… I do not believe there is any. I am very happy to be living as normal a life as I can.

What does Monday have in store for me?... Only God knows… and I turn all my cares, worries and fears over to him.

Here is a great new song that wonderfully drives home this point. It is called “Cast My Cares” by Finding Favour”. Here is the link. Enjoy!

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

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.

1 John 4:18

More to come…

http://mantlecell.blogspot.com/

I had a BLAST at my Daughter's Wedding

7/26/15 – I am thrilled to report that I attended my daughter’s wedding and was there with energy and enthusiasm. I walked her down the aisle, sang a song at her wedding ceremony, danced with my daughter during the traditional father-daughter dance, I gave a toast to the newlyweds, gave a blessing before the meal and had a blast of a time. I am so thankful that my doctors and staff did all they could do to ensure I could share this wonderful day with my daughter. I am so happy for my daughter Jill and her new husband Marc. May they have many years for health, happiness and prosperity.

So tomorrow I start my 4^th treatment cycle. I guess all good things must come to an end... but for now I am living on cloud 9.

Below is a glimpse of my daughter’s wedding ceremony and reception. 

Also I am so happy that I was able to give them the gift of song. The following YouTube link includes a video of me singing “Wedding Song (There is Love)”.  https://www.youtube.com/watch?v=Yj3MqAAhzWY

If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing.

1 Corinthians 13:1-3

More to come…

http://mantlecell.blogspot.com/

Happy 7 Year Anniversary

7/17/15 – Today marks 7 years since I was diagnosed with Mantle Cell Lymphoma. As strange as it may seem, this is a day when I feel the need to celebrate.

When I think back to July 17, 2008, the day I was diagnosed… as I sat in a waiting room, waiting to speak to an oncologist at Morristown Hospital, I am using my Blackberry to Google Mantle Cell Lymphoma. I read many grim post and articles. Everything on the internet was telling me that my time was short, I had maybe 2 to 3 years at best and that Mantle Cell Lymphoma was truly a death sentence… At the same time I am hiding what I am doing and reading from my wife. I put on a brave face, I make it known that this is no big deal, that I will be fine, and that we have nothing to worry about… Within my personal thoughts I was trying to process just what was happening to me.

If you take that moment back in 2008… and then see that 7 years have passed, why would you not want to celebrate? Although I have had my ups and downs over the 7 years, I have had many awesome times. Times and events I wouldn’t trade for anything in the world. And in a week from today I will be at my daughter Jill’s wedding. This is certainly not something that seemed feasible as I sat in a Morristown waiting room back in 2008.

Sure I still have some work ahead me to get back to full health, but I will fight, I will get healthy and I will be here to celebrate many more July 17^th Anniversaries.

Also, there are so many people to thank for all the support I have gotten over the years. To all, and you know who you are, please accept my sincere THANKS for all you do for me and my family. And for my family, you are the reason I fight on. I love you so much.

To my fellow cancer fighters… Cancer research and treatment has incredible advancements every day. We can never give up because we just never know what great advancement each new day brings.

Stay STRONG, Be POSITIVE and may the Peace of Christ be with you always.

Here is a great song about being strong. It’s called: “You Gotta Be” by Des'ree

Enjoy!

https://www.youtube.com/watch?v=9oZXJD1NVW0

The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. The Lord is the strength of his people; he is the saving refuge of his anointed.

Psalm 28:7-8

More to come…

http://mantlecell.blogspot.com/

My Scan Results Are In

7/8/15 – On Monday, July 6^th I had a check-up appointment which resulted in me needing fluids due to continued lightheadedness I have been experiencing. This is often caused by dehydration or low blood pressure. The fluids were given as a precaution. Also, later in the day I was scheduled for my first PET scan since I started treatments. I received the results of my scans the next day, Tuesday, July 7^th. The hope was that I would be able to bypass my 4^th treatment and go straight to getting the DLI. Well… this was not the case. Although my scans showed good improvement, it was not enough for me to be given pass on my 4^th cycle. 

I did learn of the plan that is in place for me for the next month (which includes the goal for me to be at my daughter’s wedding with plenty of strength and energy). The plan is as follows:

• Monday, July 20^th – Follow-up check up to make sure my counts are in a good place. Later on this day I will be meeting with the Transplant Team to discuss my upcoming DLI
• Friday, July 24^th – My daughter’s wedding
• Monday, July 27^th through Wednesday, July 29^th – I receive my 4^th cycle of chemotherapy
• Monday, August 3^rd – I receive my DLI with cells that have been saved from my Stem Cell Transplant which was back in November of 2013. 

So the good news is that treatments are working.

The less than great news is that I need another cycle of treatment. 

More good news is that the DLI is within reach and this should further improve my ability to fight my MCL.

So the plan for my next month is in place. I just need to do what my doctors ask me to do. I am very confident that all will be fine. Especially with all the prayers that are being said on my behalf. I have gotten through my treatments back in 2008. I made it through my 2013 relapse with the help of Ibrutinib and a Stem Cell Transplant. I will get through my current relapse with my chemo treatments, DLI and CART. 

Most important... None of this is possible without the healing powers of God.  

Here is another YouTube link great song I would like to share with you. 

It's called "Keep Making Me" by the Sidewalk Prophets. Enjoy!

https://www.youtube.com/watch?v=UI1obeb3A9c

Then they cry unto the LORD in their trouble, and he saveth them out of their distresses.

He sent his word, and healed them, and delivered them from their destructions.

Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!

Psalm 107: 19-21

More to come…

http://mantlecell.blogspot.com/

Low Blood Pressure = Trip to the Hospital

6/30/15 – My chemotherapy days for cycle 3 (June 17-19) seemed to move well. We had a planned follow-up on June 30^th but this ended up being too long a span of time to wait to check my counts. The good news is that I have not run a fever but I started to feel weak and tired around June 25. By the time June 27^th came around I was also very light headed. On June 28^th I could hardly stand up. My wife took my blood pressure and it was 67/45. This definitely explained my lightheadedness. We decided to call the Cancer Center and was told to get into the ER. It was very likely that I needed blood and platelets. Going to the ER at Hackensack University Medical Center always stresses me out a little. It’s not because you get bad treatment there… because you don't. They even have a separate Oncology ER and they have private rooms…… it is because the hospital usually does not have hospital rooms available in the oncology section and you end up being in the ER for many hours and sometimes days. This ended up ne the case with me. I never made it to a hospital room. All my treatment this go around would be in the ER.

My treatment in the ER began with checking my counts and confirming that I was running a very low blood pressure. My counts were very low across the board.  As luck would have it, my favorite infectious disease doctor was in the ER (Dr. Sebti) and he stopped in to see me and reviewed my counts. He and my oncology team collaborated on a plan which was to give me bags of platelets, 2 bags of blood and precautionary antibiotics due to my 0.6 white blood cell count.

Over the course of Sunday, June 28^th and into the early hours on Monday, the 29^th I received all the prescribed treatments. When my counts were rechecked they were all back at safe levels. My WBC was now 1.6. I was released later in the day on Monday because the ER was able to give all the treatment I needed. Also, my blood pressure recovered a little. I was running about 95/55. I typically run low. As my counts raise over the next week the thought is that my blood pressure will go to normal levels. I have a follow-up scheduled at the Cancer Center on Thursday, July 2^nd.

So… this whole hospital visit could have been avoided if my follow-up appointment was scheduled earlier. I am going to have to pay closer attention to this. I am pretty sure a follow-up should happen no later than the 10^th day of the cycle.

I am feeling much better today and looking forward to a great month of July.

Here is a link to a great new song by Third Day. It is called “Soul on Fire”. I sure hope I can carry the words and energy of this song into July and to my daughter’s wedding.

https://www.youtube.com/watch?v=i7lv9oMjv_0

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/

Cycle 3 begins early

6/17/15 – Today I started my 3^rd cycle 5 days ahead of schedule. The thought with jumping into my treatment a little early is that it will give me a longer recovery period and hopefully help me meet my goal of being at my daughter Jill’s wedding with plenty of energy. I truly appreciate that Dr. Goy and team are working towards helping me achieve personal goal as well as health goals. I believe it is extremely important that I take every opportunity to live life and not allow my health challenges to keep me away from life’s big events.  

After this cycle I will be having a PET scan which is scheduled for July 6^th. Depending on the results of the scan there is a chance that I may not need a 4^th cycle. This would allow me to have the DLI sooner than we had planned. This, of course, would be awesome.

DLI (donor leukocyte infusion). This is an infusion in which lymphocytes from the original stem cell donor are infused, after the transplant, to augment an anti-tumor immune response or ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells.

Certainly I have a lot to look forward to. This again makes it clear to me just how powerful it is to believe, have faith, have trust in God and prayer, and to never lose hope.

Here is a YouTube link to a great song about hope. "My Hope is You" sung live by Third Day.

https://www.youtube.com/watch?v=ZaV7tVrc6yk

You will be secure, because there is hope; you will look about you and take your rest in safety. You will lie down, with no one to make you afraid, and many will court your favor.

Job 11:18-19

More to come…

http://mantlecell.blogspot.com/

Released With Good News

6/12/15 – I’m back home again. I was released on Thursday, June 11^th at around 8:00PM. This seemed to make sense being I had not run a fever since I was admitted. Sure my doctors want to know the source of the fever but it really doesn’t make much sense to keep me in the hospital when all the tests have come back negative. This includes a piece of good news. I tested negative for para-influenza. This means that my immune system fought off something that any typical adult immune system would be expected to do.

I also learned of more good news. The CT scans revealed that my tumors (nodes) have significantly reduced in size. This was awesome to hear. It is great to know that all I am going through is producing positive results.

I am looking forward to build this positive momentum as I get ready to begin my 3^rd cycle.

Commit your way to the Lord; trust in him, and he will act.

Psalm 37:5

More to come…

http://mantlecell.blogspot.com/