Wednesday, April 15, 2015

It’s Official; My Mantle Cell Lymphoma is Back… Again

4/15/15 - I met with Dr. Goy today and I received the official word that the biopsy results showed that my Mantle Cell Lymphoma is back again. Of course, the ever positive Dr. Goy feels good about getting me back to good health. We discussed and agreed to a phased treatment approach.

The first phase will be a chemotherapy  referred to as R-BAC which is a combination of rituximab, bendamustine, and cytarabine. The plan will be for me to have four 21 day cycles. We are looking to have my port surgically installed sometime next week and then we can begin my first cycle at the beginning of the following week, Monday April 27th. This will be 3 consecutive days.

Once I have successfully completed R-BAC, the next step will be me getting a 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.

Once the DLI has been successfully completed the next step is CAR T-Cell Therapy. This is a treatment that will engineer my immune cells to treat my MCL. Depending on the timing this treatment will being given to me at MedStar Georgetown University Hospital or The John Theurer Cancer Center at Hackensack University Medical Center. Doctor Goy is very excited about this treatment… so of course I am excited about it as well.

As you can imagine this was a very long day with and lot for me to process. I am confident that we have an excellent plan and that it will result in a successful outcome for me.

In the meantime I will live my life in as normal a way that I can. As a matter of fact I receive my last infusion of the first cycle on Wednesday, April 29th. I will follow this with me boarding a plane two days later to go to my Goddaughter’s wedding on May 2nd. The way I see it is life is meant to be lived… no matter what obstacles we face.

Cast all your anxiety on him because he cares for you.
1 Peter 5:7

More to come…


http://mantlecell.blogspot.com/

Sunday, March 29, 2015

Next up… Biopsy

3/29/15 – Last year on April 2nd I started back at work following months of recouping from my Stem Cell Transplant. This year on April 2nd I will be having a biopsy to gain a better understanding about my latest relapse. Boy, what a difference a year makes. 

Unfortunately, I am pretty sure I know what the results of the biopsy will reveal. For one it should confirm that my MCL is back. Secondly, it will find that my MCL is more on the aggressive side of things.

So if we already know what the results will be why put me through this? Well the reason we need to go through this next,important step, is to help determine what the best course of treatment will be for me. 

To be honest, I am not stressed over my MCL being aggressive. It really is the nature of the disease. I have dealt with this before and I am confident that I will do so again. The thing that makes me a little anxious is that I just want to know what the plan is and then I just want to get going with it... The waiting is always the hardest part.

With today being Palm Sunday I wanted to share a fantastic song with you. It is called “At the Cross (Love Ran Red)” by Chris Tomlin. Here is link to the song. Enjoy!

But God shows his love for us in that while we were still sinners, Christ died for us.
Romans 5:8

More to come…

http://mantlecell.blogspot.com/

Friday, March 20, 2015

Getting all my ducks in a row

3/20/15 – I met with Dr. Goy today. He assured me that there are many options available to me but he first wanted to perform a full work up on me and get a better picture as to where I stand. It started with taking a full blood screening. Next, there is a PET scan scheduled for Wednesday, March 25th. Once that is done a biopsy will be scheduled within a week later. At that point Dr. Goy should have everything he needs to recommend a course of treatment (including just how aggressive my cancer is). Between Dr.  Goy and my transplant doctors Dr. Rowley and Dr. Donato, they all seem to think another ALLO transplant is something to strongly consider after we find a way the re-achieve remission. To be honest this option does not make me leap for joy. If you think about the amount of time I invested into the stem cell transplant (SCT) compared to how long I was mantle cell lymphoma (MCL) free, the math does not WOW you. My SCT was 19 months ago. I was able to resume working about only 11 months ago. It hard to see that as a success. I would have expected a few years of remission (at a minimum). When I passed that thought by Dr. Goy he said that the short remissions was due to the lack of me having graft versus host disease (GVHD). I do know that Doctors Rowley and Donato were concerned that I have never showed any evidence of GVHD but I guess I never realized it would lead to a short remission. I always viewed the fact that I did not get GVHD as a good thing. I guess a little bit of GVHD is a good thing but too much of it could be pretty bad. Oh well, I guess it is something I will be more concerned with for my next SCT.

There is no doubt that I am disappointed with my latest relapse... but I do not have the luxury to dwell on it. I have an awesome year ahead of me. My Goddaughter is getting married in May and my daughter is getting married in July. There is nothing that can stop me from being present at these wonderful events with bells on… and to be present in my family’s lives for a long time after that.

True, MCL is something I will have to deal with for the rest of my life… my long and productive life… but I will not let it define me… nor will it turn me into a victim who runs and hides from it… nor will it keep me away from the things I consider most important. 
I am stronger than my cancer… and I will beat it… again.

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”
Joshua 1:9

More to come…


http://mantlecell.blogspot.com/

Thursday, March 19, 2015

My “Not So” Lucky Shirt

03/19/15 - It is now 19 months since my stem cell transplant. I have been very doing well… up until now.

On March 17th I celebrated my 54th birthday. With it being St. Patrick’s Day, I enjoyed some corned beef, cabbage and Guinness. One of the gifts I received from my wife was a green Irish tee shirt with a 4 leaf clove on it and the words “Lucky Shirt” printed on it.  
Being I had scans on March 16th and my follow up monthly appointment was on March 19th to get my results, I figured it was a great idea to wear this “Lucky” shirt to the Cancer Center. The plan to simply get my blood work, meet with the doctor for a checkup and get my results, and then go for my monthly IVIG (note: I have been having IVIG’s for that past 3 months).

Well, I guess you should never count your chickens before they hatch because my “Lucky Shirt” was not that lucky after all. I received results today that it appears that my Mantle Cell Lymphoma is back. The scans revealed that there are 4 new enlarged lymph nodes, one of them being larger than the one that was found back in 2013. Just 90 days ago my scans were completely clear. It sure seems that once MCL decides to wake up it moves pretty quickly. 

I will be meeting with Dr. Goy tomorrow for a consultation. I have all the confidence in the world that he will have some outstanding options for me.
So again my adventure with mantle cell lymphoma has taken an unexpected turn. At this point I have no idea what I will do. I do know that this will require strong faith and trust in God (and my doctors) and a positive attitude.

He will not fear bad news; his heart is confident, trusting in the Lord.
His heart is assured; he will not fear. In the end he will look in triumph on his foes.
Psalm 112:7-8

More to come…

http://mantlecell.blogspot.com/

Wednesday, November 26, 2014

Giving Thanks on My Happy 1st Birthday

Thanksgiving Day: 11/27/14 – Today I am joyfully celebrating my 1 year birthday and there could be no better day for this to land on than Thanksgiving. One year ago I had my stem cell transplant and it is simply amazing how so much has changed since then. I am healthy, feeling strong and living life as if I was never sick a day in my life. Last year I spent Thanksgiving in the Hospital… this year I will be celebrating this wonderful double holiday with my family.

To date, all my scans are clear and I am down to only taking 3 medications (valacyclovir, pencicillin and sulfameth).  On December 4th I will have a bone density test, a pulmonary test and I will be given a number of vaccination shots. This should take me from an infant’s immune system to one of a big boy.  

My adventures with mantle cell lymphoma has been one heck of a ride. It has taken me many places… it has introduced me to many fantastic people… it has provided me many new experiences… it has taught me about keeping things in perspective… and it has greatly increased my faith and love of God. I truly have so much to be thankful for. Certainly every day is a blessing.

On this Thanksgiving Day I am thankful for my health, thankful for the support and love of my friends and family, thankful for my talented and compassionate medical team, and… believe it or not, I am thankful for the journey. This adventure has had profound impact on me and all those around me.

Going forward there is only one thing I know for sure… it is that I have no idea where life goes from here. With that said it is important that we take life one day at a time and we make the most of every moment.  

May your lives be full of faith, hope, happiness, love and good health.

Happy Thanksgiving!

“With the loving mercy of our God, a new day from heaven will dawn upon us. It will shine on those who live in darkness, in the shadow of death. It will guide us into the path of peace."
Luke 1:78-79

More to come…


Thursday, July 17, 2014

Happy 6 Year Anniversary

7/17/14 – I simply cannot believe that 6 years have passed since I was diagnosed with Mantle Cell Lymphoma. Then again, when I look back at everything I have experience since July 17th 2008, I find it hard to believe that I squeezed all this into 6 short years. Even though I have been told I have cancer, was treated for it, relapsed, was treated for it again and then added in a stem cell transplant for good measure, I can say without any hesitation that I have been blessed. From the many great doctors and nurses who helped me… the many family and friends who have been there for me… and how well I have responded to everything, how can I look at this any other way?

I did have my scans in June and everything looks fantastic. I have my energy back, I am back at work, and I am happy to say that I am playing my guitar regularly. I feel like one of those t-shirts you get and the Hallmark stores that say “Life is Good”.

Sure, no one knows what tomorrow has in store for us. The best thing anyone can do is to forget about that past (being there is nothing we can do about it) and not worry about the future and simply live for today.

For by grace you have been saved through faith. And this is not your own doing; it is the gift of God
Ephesians 2:8

More to come…


Thursday, May 22, 2014

Day +176... First Immunization Shot

5/22/14 – I had my 3 week check-up today and all is GREAT!!! All my counts are right where they need to be and I continue to feel good. I hit another great milestone today. I no longer need to take Prograf and Magnesium plus Protein. Many of my restrictions can now be removed. I actually have been given the OK to have a beer. I am not a big drinker but I must say I am looking forward to enjoying a cold beer. The one thing that seems to be a big concern is exposure to the sun.  As a precaution I apply sun block each day before I head off to work.  

Also today I received my first immunization shot. It was the pneumococcal vaccination. I guess it is kind of like getting a flu shot. It was really no big deal.

I met with Dr. Rowley today. I think he was truly surprised on how well I am doing.

Next on my "things to do" is to get my periodic PET scan, which is scheduled for June 16th with me getting the results on June 20th.

my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold and my refuge, my savior; you save me from violence.  I call upon the LORD, who is worthy to be praised, and I am saved from my enemies.
2Samuel 22:3-4

More to come…