It’s Beginning to Look a Lot Like Christmas

Every year my daughters ask me what I want for Christmas and every year I answer “Peace on earth”. If you think about it if you have your health, happiness and if you are surrounded by your friends, family and loved ones… what else do you need as you celebrate the birth of Jesus Christ.

This week I find out how I am doing with the health part.

12/12/11 – I went for my scans today. There has been a change how the barium sulfate contrast is given to us before a scan. For my past scans I would start drinking it the night before and finish it about 90 prior to the scan. Now we have to get to the Radiology office 2 hours before the scan and drink all the contrast there. It is certainly not as convenient but I am sure there was a good reason for this change.

12/16/11 – I met with Dr. Goy today and he gave me the excellent news that my scans were all clear. Now that is certainly a fantastic early Christmas present.  I am now looking forward to a great Christmas with my friends, family and loved ones. I wonder if I will also get the “Peace on Earth” I asked for?

As many of us are shopping and rushing about to get ready for the Holiday we often lose sight of the real meaning of Christmas. Here is a link to a song on YouTube that reminds us what Christmas is all about: http://www.youtube.com/watch_popup?v=OExXItDyWEY&vq=medium

I continue to be on a checkup schedule of every 6 months. My next scan is scheduled for June 11th and my follow-up appointment with Dr. Goy is on June 15th.

My next posting will be in June after I get my scan results.

Merry Christmas and Happy New Year to All

More to come…

http://mantlecell.blogspot.com/

2011 MCL Symposium

Anyone who had read this blog should know of the admiration, respect and gratitude I have towards Dr. Goy so when I received a phone call from one of his Research Nurses the other night, inviting me to the “2011 MCL (Mantle Cell Lymphoma ) Symposium” I immediately said “YES, I will be there!”.

This great event will be held on: Saturday, November 12, 2011 at The John Theurer Cancer Center in Hackensack, New Jersey and it will include experts from all over the world sharing their view of what the future looks like for Mantle Cell Lymphoma survivors like us.

So when you read: 

“Join Us as Internationally-Recognized Experts Share the Latest in Treating and Managing Mantle Cell Lymphoma" 

 Does this interest you? If it does, here is what the day will include:

2011 MCL Symposium Agenda: Saturday, November 12, 2011

8:00 AM to 3:30 PM

·         Complimentary registration, breakfast and lunch

SYMPOSIUM AGENDA

8:00 - 8:30 AM

·         Gathering & healthy continental breakfast buffet with smoothie station

8:30 - 8:40 AM Andre Goy, M.D., M.S., Chairman and Director of The John Theurer Cancer Center.

·         Opening remarks and introductions.

8:40 - 9:40 AM Elias Campo,M.D., Ph.D University of Barcelona, Spain

·         Understanding the Biology and Prognostic Markers of MCL. Stratification of patients by genetic and biological markers. Update on the identification of new targets for therapy and the potentials of tailoring treatments to individual patient needs.

9:40 - 10:40 AM Jorge E. Romaguera, M.D.M.D., Anderson Cancer Center, Houston, TX

·         R-Hyper-CVAD, conventional and emerging frontline chemotherapy regimens for both younger/fit patients and for older, or transplant ineligible, patients. The emerging role of consolidation and maintenance therapies in management of MCL

10:40—10:55 AM

·         Coffee Break

10:55 - 11:55 AM Christian Geisler. M.D., Ph.D. Rigshospitalet, Copenhagen, Denmark

·         Impact of high dose frontline therapy with autologous stem cell transplant on outcome: the Nor-dic Group’s experience. Molecular remission and the potential benefits of monitoring minimal residual disease after complete molecular

11:55 - 12:40 PM

·         Lunch

12:40 – 1:40 PM Scott Rowley, M.D. John Theurer Cancer Center, Hackensack, NJ

·         Options for Relapse or Refractory MCL. Are autologous stem cell transplants better in a frontline setting? Progress & the role of the mini-allo, or reduced intensity,non-myeloablative allogeneic transplant.

1:40 - 2:40 PM Andre Goy, M.D, M.S. John Theurer Cancer Hackensack, NJ

·         Toward Cure and Less Toxic Treatment: Emerging and Novel Therapies for MCL. Exciting new directions and the most promising targeted treatments – single and combination therapies – cur-rently in development and clinical trials.

2:40 - 3:10 PM David Miller, 9-year MCL Survivor, Aspen, CO

·         Perspectives from an Expert Patient and Long-Term Survivor. Optimizing survival and health through healthy lifestyle and cutting edge nutrition. What is the role of the informed patient from diagnosis through long-term survivorship? The best ways to become an informed patient. Opti-mizing communication with your oncologist and becoming a valuable member of your healthcare team. Is a clinical trial right for me?

3:10 - 3:30 PM

·         Farewell remarks

If you are interested in attending or learning more about this event please see below:

Registration: 
 For more information or to register please email Ms. Ewelina Jakubowska at:

ejakubowska@humed.com 
or call at 201-996-4469

You can also register online at: 

http://www.jtcancercenter.org/site/event-view-pagemantle_cell_lymphoma_symposium

  

The John Theurer Cancer Center is located at: 92 Second Street, Hackensack NJ 07601

 

I plan to post my next update after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th. Of course if I have any news to report I will enter an update sooner. 

 

More to come…

http://mantlecell.blogspot.com/

Happy 3 Year Anniversary

7/17/11 – Today marks my 3 year anniversary of being diagnosed with Mantle Cell Lymphoma.  If you were to see me today, other that the small scar where my port used to be, there is no evidence that I was ever sick.  I continue to be in full remission and I feel great and I am back to living a very full life. Although there is not are cure for MCL that I know of, I fully expect to remain in remission for the very long time and hopefully the rest of my life.

With today being a Sunday, I was able to spend my morning in Church, playing my guitar as a music minister. It was certainly a joy to have my wife and two daughters in the congregation. In speaking with my good friend and fellow music minister today, he said it seems like it should be much longer than 3 years. There is no doubt that much has happened in my life since July 17^th, 2008. And it does truly feel like it was a lifetime ago.

If you are reading this blog as someone recently diagnosed with MCL, you should gain great relief in hearing that you can and will beat this. For one thing, medical science has come a long way.  Another thing is that by you keeping a positive attitude, no matter what little setbacks you may (or may not) run into, you will be greatly helping your doctors, caregivers and caretakers succeed in making you better. The day will come that you too will be marking the anniversary of your diagnoses with joy in your heart.

And know that God says: “I am always with you… Be not afraid.”

May the peace of Christ be with you always.

I plan to post my next update after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th. Of course if I have any news to report I will enter an update sooner.

More to come…

Let’s Celebrate

6/13/11 – I went for my scans today. As I was being registered I was asked if I had ever done this before. As I thought about it I have completely lost count of just how many times I have had scans. I guess the great news is that I appear to others as someone who has never done it before.

6/22/11 – My daughter Alli graduates High School today. It is great to be here.

6/24/11 – Today I meet with Dr. Goy to get my results from my scans. We had to wait a little longer because Dr. had an emergency at the Hospital. After hearing this I said to the nurse, “I have been on the other side of this when I needed Dr. Goy to drop everything and tend to me, trust me, I have no issue with waiting”. When we did meet with Dr. Goy he asked me how I felt. I quickly replied “I feel GREAT!!!” Dr Goy then said that everything is perfect. I had no issues at all. He was so pleased with my results that he graduated me to scans every 6 months. WOW, isn’t this great!!!!! With all the graduations going on in my family it is time to CELEBRATE! I truly feel that after all my past challenges that I am now stronger than ever.

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9-10

My next update will be after I get the results from my next scans which are scheduled for December 12^th with me getting the results on December 16^th.

More to come...

http://mantlecell.blogspot.com/

Don’t Worry, Be Happy

2/23/11 – I had my CT and PET scans today

2/28/11 – I met with Dr. Goy to get the results of my scans today. He never ceases to amaze me on how upbeat and positive a man he is. I always feel great after meeting with him. My results showed that the enlarged lymph node of 1 centimeter in size is still there and it is actually a little hotter (hot meaning showing high cell activity) than it was in December. Dr. Goy feels that being the lymph node has not increased in size since November there little to no chance that it is a recurrence of my Mantle Cell Lymphoma. It is far too aggressive a cancer to have not increased in size since November. I look at this as great news.

I guess all in all this was worrying about nothing. As a cancer survivor it is so important for me not to let worries bring me down or stress me out. Each day we have is far too valuable and important to waste it worrying about things that may be. My focus needs to be on what is definite and true. I have a great wife and daughters, great family and friends. I have so much to be thankful for.

In 16 days (March 17^th) I will turn 50 Years old. WOW, when I was a young kid I viewed 50 as very, very old. Now I see hitting 50 as a HUGE accomplishment.  

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Below is a short prayer that picked up from a retreat a attended this past weekend and I wanted to share with you.

Lord please fill my heart and my soul with your Holy Spirit, please fill them with Your love, compassion and mercy so evil, doubt and despair can not enter.
Please open my heart to Your forgiveness and to leaving yesterday behind; please help me to live for today and Your promise of tomorrow.
Please provide me with Your strength, Your courage, Your wisdom and Your patience to follow Your path that lies ahead.
Please provide me with Your Guidance in my actions and words to do Thy will.
I place everything I have, everything I am and everything I am to become, my hopes and my dreams, my joy and my happiness, my trials and my tribulations, my entire being Lord, I place them all in Your hands.
Please help me to surrender myself completely and totally to You Lord, my heart my soul, my body and my mind.
Please take me in Your arms so that I may know true happiness.

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My next update will be after I get the results from my next scans which are scheduled for June 13th with me getting the results on June 21st.

More to come...

http://mantlecell.blogspot.com/

All I Want For Christmas...

Christmas is a time of year where all you want is your loved ones to be happy. It is also a time of year when it makes you feel so great to spread a little cheer to someone in need of it. The Cancer Center in late December is an interesting mix of happiness, merriment and hope with a overpowering feeling of sadness for those who are struggling with a horrible disease. The staff does all they can to bring smiles to the faces of those in pain and they should all be admired for their efforts. Truly for those who work at the Cancer Center, it is more than a job to them. They are the hands and feet of God.

I was at the Cancer Center twice the week before Christmas. After all, doesn't everyone want a PET Scan for Christmas? NOT!!!!!!!!!!!!!

12/20/10 - I had my PET Scan today. This is one of those tests that take a while. It is not that the scan takes long. It is that you are first injected with some kind of fluid that needs time to run through your system before the scan. After the injection I waited about 90 minutes in recliner watching TV. The scan itself takes about 20 minutes.

12/23/10 - I get the results of my PET Scan and blood tests today. I will meet with Dr. Mateo again being DR. Goy is in France visiting his father for Christmas.The good news was that my IG levels are actually high. This means I did not need another IVIG at this time. As far as the results of the PET Scan it is not good news, but not bad news either. It is more of a wait an see news. The scan did confirm the existence of an enlarged lymph node and it did show as being a little hot (which means there is a higher level of cell activity). In all honesty if I was just a normal healthy person with no history of lymphoma it would be seen as nothing to worry about. But I am not that normal person and they want to be extra special careful. I have been scheduled for another CT Scan and PET Scan at the end of February. My IG levels will also be rechecked at this time. I look at it this way... I could be a nervous wreck for the next two months and worry about this or I could be positive and not worry about anything unless my doctors say there is a reason to. I chose not to worry. Life is way too short the spent time worrying about things that "could" be a problem. If it becomes a problem, I will deal with it. Until then I will simply live my life and make the very best of each day.

If after reading this you are concerned for me, please don't be. It is very likely that most of us are walking around with enlarged and inflamed lymph nodes this time of year. I must admit the one thing that makes me crazy about being a cancer survivor is that I can't get a sniffle without someone thinking I am sick again.

My CT and PET Scans are scheduled for 2/23/11

My follow up appointment with Dr. Goy is scheduled for 2/28/11

I plan have a new post after I get my scan results in the end of February.
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As we approach the New Year, we often spend much time thinking about the future. Here are some thoughts to ponder when planning the future:


This is from Rick Warren's Daily Devotional on how to face an uncertain future:
The Bible offers three timeless principles for facing an uncertain future:

1. Let God set your goals. It’s foolish to make any plans without first consulting God. He’s the only one who does know the future, and he’s eager to guide you through it. The Bible says “We may make our plans, but God has the last word” (Proverbs 16:1 GNT). In other words, planning without praying is presumption. Start by praying, “God, what do you want me to do?”

2. Live one day at a time. While you can plan for tomorrow, you can’t live tomorrow until it arrives. Most people spend so much time regretting the past and worrying about the future, they have no time for today! Commit to making the most of each moment of each day. Jesus said, “Don’t be anxious about tomorrow. God will take care of your tomorrow too. Live one day at a time” (Matthew 6:34 LB).

3. Don’t procrastinate. Procrastinating is a subtle trap. It wastes today by postponing things until tomorrow. You promise yourself that you’ll do it “one of these days,” but then “one of these days” turns into “none of these days.” The Bible says, “Do not boast about [what you’re going to do] tomorrow, for you do not know what a day may bring forth” (Proverbs 27:1 NIV). What have you planned to do that you haven’t done yet? When do you intend to start working on it?

And here is a wonderful scripture on how God gives us strength to deal with whatever the future has in store for us:
The Lord will guide you continually,
giving you water when you are dry
and restoring your strength.
You will be like a well-watered garden,
like an ever-flowing spring.
Isaiah 58:11

I truly hope everyone had a wonderful Christmas and I wish you all a blessed New Year.


more to come...

http://mantlecell.blogspot.com/

There is so much to be Thankful for

As I think back to the spring of 2008 when I wasn’t feeling well and had so many questions to now where it is all a distant memory, I truly do have so much to be thankful for.

Over the past couple of months I seem to have picked up and upper respiratory infection that I just can’t kick. I met with a few doctors and have been on a number of antibiotics to no avail. I had an appointment with Dr. Goy in September and it seems that my immune system is pretty low. It would seem that it does take time for our immune system to fully recover after all the chemo treatment I had. It sometimes needs years to get back to normal. We have these things called GA levels and apparently mine are lower than they should be. I went to see Dr. Goy to see what he suggested I do. He first wanted to make sure it was only an infection so he had me get a CT Scan. Thankfully it came back clear. He then suggested that I get an IVIG infusion.

• Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
• Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
• Inflammatory and autoimmune diseases.
• Acute infections.

The only issue with me getting this treatment was there was a blood shortage and supplies were limited. I would have to wait for a while. It ended up being a pretty long wait about two months. I had the IVIG treatment on 11/24/10.

Below is the update on my checkups:

11/15/10 – It is that 4 month scan time again. Today I had my CT Scan

11/18/10 – Today I get my results to my scans. I met with Dr. Mateo (a new doctor on Dr. Goy’s team). Overall my scans looked good... Thank God!!! The one thing that did show up on my scan was an enlarged lymph node in the right hilar (one of the areas I have had tumors in the past. Now there are many reasons why someone could have an enlarged lymph node, and with the upper respiratory infections I have been having it is most likely enlarged because of that. Due do to my history, Dr. Mateo is being overly cautious and scheduled me for a PET Scan in December. Dr. Mateo also advised me that my GA levels are low so he scheduled me for my IVIG infusion.

11/24/10 – I met with Dr. Mateo again. To be proactive, he scheduled me for a second IVIG in about a month just in case my IG levels do not improve from the treatment I get today. I did finally get the IVIG infusion. It took about 4 hours.

My schedule for the next month is as follows:
• 12/17/10 – Blood test for IG levels
• 12/20/10 – I will have my PET Scan
• 12/23/10 – I will get the results of the PET Scan, have IVIG infusion if I need it.

Tomorrow is Thanksgiving. I really do have so much to be thankful for. I have great family and friends, a loving wife and the best daughters ever. God is Good, God is Great!!!!!!!!

I know I have included this in my BLOG before but here is a great song about being thankful that I would love to share with you. It is called "Thank You for Hearing Me" by The David Crowder Band. Enjoy!!!  http://www.youtube.com/watch?v=_v-YPbbNRPY

Happy Thanksgiving!!!!!!

More to come…

http://mantlecell.blogspot.com/