Another Happy Follow Up Appointment

12/24/08 – I celebrated Christmas Eve with family, without infections. Yeah! I had a great time .

12/25/08 - I celebrated Christmas Day at home. Double Yeah! No Infection. Another great day with family.

God has been good to me allowing me to get to spend Thanksgiving, Christmas Eve and Christmas day out of the hospital without infections.

12/26/08 – I had a follow up appointment at Hackensack Hospital. All my blood counts look great. My white blood cell count is up to 9.9 (this is a great number).

I have another follow up appointment of Monday, December 29th.

My next treatment (treatment 6/cycle 3B) is scheduled for January 5th. If all goes well with my follow up scans this should be my last round of chemo.

More to come…


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A Merry Follow Up Appointment

12/23/08 – I had a follow up appointment today. So far I am fever and infection free. My blood counts were good except for the fact that my white blood counts are low (.6). This, of course, is expected. I will just need to be careful until they come back up. Dr. Feldman said I should not isolate myself through the holiday season, just be careful and follow common sense.

I also had a chemo push today in the cancer clinic. It went well. I sat next to a wonderful elderly woman who is a heart transplant survivor and battling cancer. She seemed very wise and had much advice to offer. Her words that really stuck to me were:
“You can not control what is dealt to you; you can only control how you deal with it”.These are words that we all can live by everyday. I am glad I had the opportunity to spend a couple of hours with this wise woman.

I am feeling well since I have come home from the hospital. I am hoping that I stay this way for the next couple of days.

I would like to take this time to wish everyone a
Very Merry Christmas and a Happy, Healthy New Year.
Here is one of my favorite contemporary Christmas Carols:

Manger Throne
by Third Day

What kind of king would leave His throne
In heaven to make this earth His home
While men seek fame and great renowned
In loneliness, our king comes down

Jesus, Jesus precious one
How we thank You that You’ve come
Jesus, Jesus precious one
A manger throne for God’s own Son

You left the sound of angels praise
To come for men with unkind ways
And by this baby’s helplessness
The power of nations is laid to rest

Jesus, Jesus precious one
How we thank You that You’ve come
Jesus, Jesus precious one
A manger throne for God’s own Son

What kind of king would come so small
From glory to a humble stall
That dirty manger is my heart too
I’ll make it a royal throne for you

Jesus, Jesus precious one
How we thank You that You’ve come
Jesus, Jesus precious one
How we thank You that You’ve come
A manger throne for God’s own Son
My heart is a throne for God’s own Son
A manger throne for God’s own Son
My heart is a throne for God’s own Son
My heart is a throne for God’s own Son

More to come…


http://mantlecell.blogspot.com/

Home from Treatment 5/Cycle 3A

12/13/08 through 12/16/08 – I received my Cycle 3A cycle treatment. All seemed to go well. I was released about 9:30 PM on 12/16/08. We did get home late but it is sure great to be home.

12/18/08 – I have a follow up appointment to check by blood counts. I am hoping we are headed it the direction of no infections. So far I am feeling well.

More to come…

http://mantlecell.blogspot.com/

Remission Accomplished

12/12/08 –I had an appointment today to check my blood counts, review my scans and begin the out patient treatment of my next chemo treatment (treatment 5/Cycle 3A). This was a very good day... I received great news. I am now considered to be in full remission and my tumors have again shrunk significantly. Dr. Goy was thrilled to give us this wonderful information. His go forward plan for me will be to have me scanned after treatment 6/cycle 3B and if the results continue to be excellent he will stop my treatments there being he would have achieved his goals. If my treatments stay on schedule treatment 6/cycle 3B should begin early January. In addition, Dr Goy expects that I will be able to get through treatments 5 and 6 without getting infections.

I know I still have 2 more treatments to go through but I want to thank everyone for all the prayers and support I have received from you. I truly believe that I would not have made it this far without my faith and your prayers and support.

I will be going into the hospital tomorrow for the inpatient portion of treatment 5/cycle 3A. The plan is for me to be in the hospital 12/13 through 12/16.

More to come…


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Scans

12/3/08 – I go for my CT and PET scans today. I have an appointment scheduled for December 12th to review the results. These scans will show how effective my treatments have been.

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Another Bump in the Road

11/19/08 – You know what they say about “the best laid plans”. Well I had every intension of waking up and getting my CT and PET Scans today but instead I woke up with one of my dreaded fevers and had to rush over to the hospital. At the hospital my fever was 102.5 and I was admitted. I have tried so hard to remain upbeat throughout this process but I have to admit that I am now officially discouraged.

11/20/08 through 11/24/08 – The big objective with my hospital stay will be to get my fever down, eliminate the infection and see why the infection happened again. Out of my 4 treatments I have had infections with 3 of them.

When I started treatments I have a Porta Cath surgically installed. This would be used for receiving all my chemo treatments, for drawing blood, and for a number of other things. It certainly keeps me from getting poked and saves my veins from getting overused. It was decided that the port had to come out and that it most likely is the cause for the infections. The removal procedure was quick and easy.

Once my fevers were under control with new antibiotics the next step would be to have a PICC line installed. This will be where I get my treatments and have blood withdrawn.

I was given the good news that tomorrow I will have the PICC installed and then I will be released from the hospital. This, of cause is great news. It means I will be home for Thanksgiving.

11/25/08 – I had the PICC line installed. Again this is a very quick procedure. The PICC requires much more care then the Port did but if it prevents future infections I will give it a try. While I am home I will be on 4 weeks of intravenous antibiotics.

I am released and sent home. Hopefully my next stay in the hospital will be to receive treatments.

11/26/08 – I am home enjoying time with my family.

I still look forward to having my scans to see how the treatments are progressing.

I am now about half way through my treatments. I need more than ever to focus on being positive. I must attack my disease and not let it to get the best of me (mentally). I also need to remember the little prayer my pastor gave me when this all started:

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


Happy Thanksgiving to you and your families

More to come…


http://mantlecell.blogspot.com/

Follow-up Appointments

11/14/08 – I had a follow-up appointment today where my blood cell counts were checked. All my counts look good.

11/18/08 - I had another follow-up appointment and again my blood counts look good. My White blood cell counts are low (.4) but that is expected at this point. Also, my test for the C Def infection came back negative so I guess the antibiotics are working.

Tomorrow I will have a CT Scan and a PET Scan. This will show what progress has been made with the shrinking of my tumors and how close to full remission I am. The results will most likely determine if I need 6 or 8 treatments (I am in treatment 4 now). It seems Dr. Goy is already leaning toward 8 treatments but you never know. I will, of course, follow whatever he decides.

I have had a few days in a row where I am feeling strong. I hope this continues through Thanksgiving. On that note, I ask you to remember that the word “Thanksgiving” is a word of action. I am very thankful for all the people who are supporting me, praying for me, and keeping me in their thoughts. Even with my illness I feel I am very lucky.

More to come…


http://mantlecell.blogspot.com/

Home from the Hospital (Treatment 4/Cycle 2B)

11/12/08 – I came home from the hospital today and I am feeling well. I have a follow up appointment with Dr. Goy on Friday 11/14. With me being kept on antibiotics throughout my treatments I am hopeful that I stay clear of infections and keep on track with my treatments. If all stays on track my next chemo treatment will begin Friday, November 28th.

Cycle 4 (2B)

11/5/08 – I had my colonoscopy today. Initial results showed all is clear. Some biopsies were taken. I will get the results in a few days.

11/7/08 – I met with Dr. Goy to review the colonoscopy results and plan my next treatments. All the biopsy results were clear and Dr. Goy decided to have me receive my one day outpatient chemo treatments today. This means I will be checking in the hospital tomorrow for 5 days of chemo treatments. This will be cycle 4 (2B).

Being nothing significant was found that could be the cause of my recent infections I will be put on antibiotics throughout my chemo treatments to help prevent future infections.

I am back on track with my treatments.

More to come…


http://mantlecell.blogspot.com/

Another Quick Update

10/22 – 10/30/08 – I have remained on my antibiotics for that last 10 days. I have not had a fever the entire time. In this period I have had follow up appointments with Dr. Feldman and with the Infectious Decease doctors and everything is looking good.

I have an appointment with Dr. Goy on Friday, October 31st to see where things stand and when I will be able to resume treatments. My next treatment will be cycle 4 (2B).

Also, I will be having a colonoscopy on Wednesday, November 5th. Hopefully this will help show why I get these infections after my chemo treatments.

I am looking forward to get my treatments back on track with the goal of obtaining a full remission.

More to come…

http://mantlecell.blogspot.com/

Another Bump in the Road

When I set out on my journey to beat my Mantle Cell Lymphoma I knew the road would not be an easy one. Well, the last week and a half has been pretty tough for me. I will tell you that as I write this I am mostly past the rough spot and feeling well. Here is what I went through:

10/09/08 – I am feeling well, even took a short shopping trip with my daughter. As I walked through the house later that night I had the feeling of a shin split in my left leg.

10/10/08 – I woke up feeling weak. My left leg was now very painful and started to swell. My wife checked my temperature and it was 101.5. Whenever my temperature exceeds 100.5 we are suppose to call into the Cancer Clinic. We called and were advised to come in right away.

During the hour ride to the clinic I felt weaker. When we arrived I had to get a wheel chair to transport me to the clinic. My temperature was now 103.5. It was found that I had an infection (E. coli). I was immediately started on intravenous antibiotics. In the meantime the clinic had me admitted me into the hospital in my typical Oncology ward.

Once I was in my hospital room things started to get crazy. I went Sepsis. My blood pressure was very low and I was packed in ice to bring down my fever. It was at this point where it was decided to move me into the Intensive Care Unit (ICU). ICU was able to control my blood pressure, temp and continue me on antibiotics.

What a day this has been! I put one heck of a scare in my wife.
Here I sit in ICU with medicine to control my blood pressure, antibiotics for my infection and a swollen painful leg that was diagnosed as Cellulitis.

An interesting thing to note: I had the same infection (E. coli) and Cellulitis with my first chemo cycle. Once I am better we will have to find out why this keeps happening.

10/11 – 10/12/08 – I continued to be treated in ICU. My fever and infection are now under control. My leg is still swollen but becoming less painful.

10/13/08 – Being I am no longer at risk I am moved back to the Oncology ward.

10/14/08 – I am discharged. I will have to get in-home intravenous antibiotics for the next ten days. It is GREAT to be home.

10/15 – 10/16/08 – I am starting in run low grade fevers again. It seems that I get higher fevers as the day go on.

10/17/08 – My fever goes above 100.5. We called the Cancer Center and are told to go to the hospital. I am again admitted.

10/18/08 – I am given a CT Scan to see if there is anything causing my fever and infection. I came back clear. I was also given a Doppler Test on my legs which checks for blood clots. This came back clear also.

10/19/08 – An infection called C Def was found in me. This is the culprit causing my fevers. I am put on a second antibiotic that I will be on for 10 days.

10/20/08 – I am given a test called a TEE. This checks behind the heart for infection, leaks etc… This came back clear.

Being I am on the appropriate antibiotics I can now be discharged. Again, it is great to be home.

This has been a tough run but we are getting through it. I constantly remind myself that the chemo therapy is making excellent progress. I still have about a week before I am done with the antibiotics. This has caused a delay in my chemo treatments. My next cycle is 4(2B) but it is unclear as to when this will begin. I have an appointment on Friday, October 24th. I should know more then.

Sure I am a little discouraged by the past week and a half but I remain focused on getting well and resuming my treatments

“As believers we have no business talking doubt, failure or fear! We should talk faith!”
More to come…


http://mantlecell.blogspot.com/

Quick Update - 10/7/08

10/3/08 - 10/5/08 (days 8 -10 of the 21 day cycle) - I have had a few days where I have been weak and tired. I seem to get stronger each day which seems to be the trend I hit after getting released from the hospital.

10/6/08 (day 11 of the 21 day cycle) - I had an outpatient visit. It included a quick chemo push and a blood test. My blood looked good except for my white blood cell count which was 0.1. This is expected but it also means I need to be careful of who and what I am in contact with. My wife gives me Neupogen shots each day to help build up my counts. History tells us that I should be back to normal counts in a couple of days. The interesting thing with this period of the cycle is that the times when I start to feel strong I can not be around people due to my compromised immune system. I guess it is just one of those things.

My next appointment when I get my blood tested is 10/10/08. If all goes well we will start planning for my next cycle (4=2B) which can begin within a week from then (10/17).

More to come...

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Home from Cycle 3 (2A)

9/30/08 – I returned home from the hospital this evening. The hospital stay went very smoothly and I am feeling well. My cycle 3 (2A) now will begin my 16 days of home care and outpatient visits.

10/1/08 and 10/2/08 – As with my last two hospital stays I am feeling a little tired and weak my first couple of days at home. I expect to get more energetic over the next couple of days.

While in the Hospital my niece Lauren visited. She told me that she and some of her friends ran in the “2008 – 15th Annual Newport – Liberty Water Front Run” on September 28th and represented me and my fight with Mantle Cell Lymphoma. They collected donations from friends and family for Dr. Goy’s foundation in the amount of $3400.00.

Lauren also gave me a shirt as I gift that says:

F.A.I.T.H. – Fighting Against Illness Through Him
I have the courage to fight cancer because I believe.
Winning the fight and staying mentally strong, I will prevail!
BECAUSE OF JESUS… I BELIEVE!
This is more evidence on how lucky I am.

More to come…


http://mantlecell.blogspot.com/

Handling My Treatments Beautifully

I can not tell you how much I appreciate all the thoughts, prayers, and support I have received from all my family and friends. I really believe that all the prayers are working. My treatments are progressing nicely. Things are looking and feeling better every day and there truly is a light at the end of the tunnel.

9/24/08 – I had some tests today that will show how my treatments are progressing. I should get the results in a couple of days.
9/26/08 – I had an appointment with Dr. Goy where I had a check up (my blood counts were all normal) and received my out patient Chemo Therapy which is the beginning of my next treatment cycle (cycle 3 = 2A).

Also I received GREAT news today. According to Dr. Goy, I am handling my treatments beautifully. I am at a point where I am almost in full remission. In addition, my tumors have been greatly reduced in size. All this after only two treatment cycles. Of course I know there is more work to be done and only 100% remission can be considered a complete success, but I am almost there. With another 4 to 6 cycles ahead of me I am confident I will be as good as new.
It is a great feeling to see Dr. Goy and his staff so happy with my results. More importantly they are truly happy for me and my family. With a rare decease like Mantle Cell Lymphoma, I can not tell you how lucky I am to have such a great doctor so close to my home. People literally travel from all over the world to see him. I can thank God that he is only an hour away from me.

Tomorrow I will check into the hospital for my outpatient chemo therapy. Although chemo cycles vary by patient, by cancer, by treatment type, etc… my treatment cycles span 21 days and looks like the following:

• Day 1: Outpatient Chemo - The first day of the cycle I receive outpatient chemo therapy. This lasts about 3-4 hours and then I get to go home.
• Days 2-6: In the hospital - The next 4 to 5 days I spend in the hospital receiving chemo therapy treatments
• Days 7-21: Home Care, Recovery and Follow up - Over the next 15-16 days I will take an array of medications and average two office visits per week. The key is checking my blood counts to make sure all is well. If my counts are off my caretakers will react by taking necessary actions (transfusions, additional medications, additional stay in hospital, etc…). Over these 15-16 days at home I have experienced the following:
• I feel pretty tired my first couple of days home with me regaining my strength each day.
• While I am home it is expected that around days 10 through 14 (of the 21 cycle) my white blood cell counts will drop (this is supposed to happen). This means that my immune system is weak and I need to stay away from germs, bacteria etc… until my counts are back to normal. During this time is when I should avoid being in contact with other people.
• My counts should return to normal between days 15 and 17. My guess is this will vary with each cycle.
• Once my blood counts are back to normal we start planning for the next cycle.

More to come…


http://mantlecell.blogspot.com/

Unplanned Office Visit

9/19/08 - I woke up not feeling so well today. We immediately spoke with our crack medical team who wanted to see me ASAP. I was given a blood transfusion and started to feel better almost at once. In checking me out we received some good news is that my blood counts seem to have improved.

9/20/08 - I feel so much better today. I have lots of energy and no sick feelings. I have to say that no matter what I am encountered with Dr. Goy's team knows how to treat it.

I am getting ready for my next cycle (cycle 3 = 2A) towards the end of next week. In the mean time I will be getting a number of tests (on Wednesday) to see how well things are progressing. I fully expect to hear more good news.

Below is a lyric to a song that is now my ring tone. It gives a very positive message.

Tunnel : Song by Third Day
I won’t pretend to know what you’re thinking
I can’t begin to know what you’re going through
I won’t deny the pain that you’re feeling
But I’m gonna try and give a little hope to you

Just remember what I’ve told you
There’s so much you’re living for

There’s a light at the end of this tunnel
There’s a light at the end of this tunnel
For you, for you
There’s a light at the end of this tunnel
Shinin’ bright at the end of this tunnel
For you, for you
So keep holdin’ on
You’ve got your disappointments and sorrows
You ought to share the weight of that load with me

Then you will find that the light of tomorrow

Brings a new life for your eyes to seeSo remember what I’ve told you
There’s so much you’re living for


More to come...


http://mantlecell.blogspot.com/

Cycle A versus cycle B

9/10/08 – 9/18/08

I have discussed me going through two cycles to date and that I will have a total of 6 to 8 cycles. When I had cycle 1, in actuality it was considered cycle "1A". Cycle 2 is considered cycle "1B". When I begin my third cycle it will be "2A". The cycles are as follows:

Cycle 1 = 1A
Cycle 2 = 1B
Cycle 3 = 2A
Cycle 4 = 2B
Cycle 5 = 3A
Cycle 6 = 3B
Cycle 7 = 4A
Cycle 8 = 4B

All the “A” cycles include the same medicines and all the “B’s” are the same as well. I can not have a cycle “A” cycle without a “B” cycle following it. Lastly, “A” and “B” cycles include different mixes of medicines

Why did I just go through this? It seems that my body did a better job managing the chemo after effects of cycle “A” than “B”.

It is 9 days since I am out of the hospital and I am still very tired most of the time, I get sick to my stomach when I eat, my white blood cell count is very low (which means I am very susceptible to infection), and my platelets are so low I required a transfusion. This being my first time with a “B” cycle it is very likely it will go smoother next time. Dr. Goy’s medical team does not seem surprised by “B” hitting me the way it has. Cycle “B” is considered to be harder on the patient than cycle “A”.

The most important point with this is that I knew going into to this that it was not going to be a walk in the park. Chemo Therapy is serious business and will very likely be a rough (but very passable) road.

On the positive side, in about six months this will be over and I have every intention to be back as good as new. Also, I must say that through all this I have not been in any pain. I will not let these small bumps in the road get me down. I will keep positive and at my weakest moments I need to push harder and know that Jesus is carrying me as I go through this.

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

Jesus, I believe in you and you will give me peace"
More to come…

http://mantlecell.blogspot.com/

My 2nd Treatment

9/5/08 through 9/10/08 – On to my 2nd chemo therapy cycle. Everything went well without any issue. I am now home resting and feeling fine.

What I am finding is that my days in the hospital make me a little stir crazy. It is easy to get bored. Yes, I have continued with my bike riding and walking but I need more to keep me busy. One thing that has helped me is that I have met many people with all different kinds of backgrounds while in the hospital. Some have sad stories and others are trying to remain upbeat. I find talking to other patients helps both me and them. My goal is to try and have a brief conversation with as many patients as possible during my hospital stay. I figure if I start a simple friendly conversation that I could maybe add a little pleasantness into other people’s day. I think overall that I am doing a good job in raising the spirits of those on the floor. Sure there are some very sad situations on the cancer ward. For these cases I offer my prayers to their friends and family. Speaking of prayer I do have a Eucharistic Minister or a Priest visit me each day with Communion. This lifts my spirits significantly.

Did anyone get to see the “Stand Up to Cancer” telethon? This should show you how many people are fighting for cures that are not all that far away. If you think about some of the statistics 1 out of every 2 men and 1 out of every 3 women will be touched by cancer in their lifetime. The good news is that they collected $100 million dollars in donations. It was a great friend (and Goombah) who told my wife and me that God did not give cancer to me but it will be God who will heal me. As I think about that I believe that it is very possible that some of God’s healing powers exists within some of these great doctors I am lucky to have treating me. We always hear how God needs us to be his hands and feet. While in the hospital I have seen medical professionals (volunteers to doctors) taking up the role of compassionate healers. Below are the words to a song that make me think of what Jesus asks of us.


Hands and Feet
An image flashed across my TV screen
Another broken heart comes into view
I saw the pain, and I turned my back
Why can't I do the things I want to?
I am willing yet I'm so afraid
You give me strength
When I say
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
I've abandoned every selfish thought
I've surrender everything I've got
You can have everything I am
And perfect everything I'm not
I am willing, I'm not afraid
You give me strength
When I say...
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands

This is the last time
I turn my back on You
From now on I'll go out
Send me where You want me to
I finally have a mission
I promise I'll complete
I don't need excuses
When I am Your hands and feet
I am Your hands and feet
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
More to come…


http://mantlecell.blogspot.com/

Off to College

As I go through my treatments there are somethings that I really do not want to miss out on. One of them is taking my oldest daughter off to college for the first time. In order to pull this off Dr. Goy had to be willing to be flexible with the scheduling of my next treatment and he was. Also, I had to be recovered from my fever, which I am. Everything seemed to fall into place perfectly and today bringing my daughter Jill to college became a reality. We all had a great day driving to Rutgers and setting up her room. Today was one of those proud father moments (truly a golden moment) that I will remember for the rest of my life. I thank God for helping make this happen.

Next on my journey is my 2nd chemo therapy treatment. It is looking like it will be late next week. I have an appointment with Dr. Goy On Wednesday, September 3rd. If all goes well my next treatment can start on Thursday, September 4th.

More to come...


http://mantlecell.blogspot.com/

Every Cloud has a Silver Lining

From the beginning of my journey I have told myself that I should not ever get “too up” or “too down”. This helps keep me balanced emotionally as I go through treatments. Another thing that goes with that is the expression “take things a day at a time”. I would like to change this to say “take things a moment at a time”. The way I see it is there are so many things that fill our days. A day can be filled with those passing moments where everything remains status quo. Some moments can be those pure golden moments that will make us smile for many years to come. And yes, some moments can be very challenging to get through. In all these cases I believe God is with us. God is smiling with us during our golden moments and embracing us as we go through our challenges.

This past week I hit a small bump in the road. At the time you read this I have cleared the bump, left it in the dust, and I am positively moving forward. I am going to briefly explain what happened being these are the types of things that can happen while going through chemo therapy.

8/16/2008 – Had a great day. My white cell counts are still very low but I feel very strong. I performed all my activities without any issues.

8/17/2008 – Another great day. My counts are still very low but again I feel strong. I just can not be around a lot of people. To change things up a little I played tennis with my daughter and felt great doing it. I spent the rest of the day swimming and enjoying the great weather. At night time I felt a little chill so I went to bed early.

8/18/08 – As I slept my wife reached over and felt my head and it was warm. We took my temperature at 3:00 AM and I had a fever. Going through chemo the doctors do not want our temps to be higher than 100.5. I was 101.5. We called into the Hackensack University Medical Center and were told to come into the emergency room. We arrived at Hackensack at 4:00 and my temp was now 102.3. I was immediately put on intravenous antibiotics and moved to a room. The question that had to be answered was “what caused the fever?”

When our blood counts are low, infections can come from two places: things outside us (other people) and things inside us (bacteria and other things that are inside us). My infection was caused from within and now we had to knock it out of me.

8/19/08 – 8/24/08 - I spent the next few days on intravenous. The hospital staff was simply amazing. Dr. Goy stopped by a number of times the make sure I was keeping my head up and stressed that this is just a small bump that happens sometimes and we will get past it. He, of course was right.

8/25/08 – I was released from the hospital feeling great and ready to move forward. Throughout the week I had noticed that the inevitable hair loss had started. When we arrived home Sue shaved my head. I now have a new look. It is not as bad as I thought it would be.

In this hospital stay I met another person that is in the same study. We hit it off great. I think we will be good friends.

Another thing that I am excited to share with you is in the course of treating me and running tests, a Chest CT Scan was run that showed my tumors have gotten smaller since my first treatment. This is very encouraging.

Although I hit this little bump in the road, I came away from it with more positives than negatives. A met new friend and I have the first hard evidence that my treatments are working. So, I guess it is true that every cloud has a silver lining.

We are still working out the details but it looks like my next in hospital treatments will be either the first or second week of September.

More to come…


http://mantlecell.blogspot.com/

Follow Up Outpatient Treatment

8/13/08 - I am starting to get my strength back. I had a great day of working from home, exercising and activities. My friend Larry stopped by for a visit. He asked if I have played my guitar since this whole journey started... I haven't. He gave me a new assignment. I need to play the guitar each day for at least 10 minutes. Music is a great healing tool for sure and I think I will tackle this new assignment with much enthusiasm.

Another friend Rob offered me a an exercise to work each day. During quiet time I should picture little PAC Men attacking my tumors and taking them away. This is another thing I will add to my daily activities.

8/14/08 - This was another great day. I worked from home, exercised, played guitar, and did my PAC Man imagining session. I felt so good today that I actually took a field trip on my own to St. Francis de Sales and attended a Church meeting

8/15/08 - I had a follow up appointment and Hackensack Hospital. I was advised by Judy and Dr. Feldman (Dr. Goy's partner) that my white cell counts are officially in the poop-er (this is a medical term for being very, very low). I am still feeling great and continuing my daily activities. I just need to watch where I go being I am very susceptible infection. I also received a chemo push today. This may tire me out for the next couple of days.

The amount of people who have been praying for me has been overwhelming and very much appreciated.

My next appointment is Tuesday, August 19th.

More to come...


http://mantlecell.blogspot.com/

Follow Up Appointment with Dr. Goy

8/11/08 -- I must admit that today I was a bit exhausted. I did bike a little but not the 20 minute sessions 3 times per day I was doing in the hospital. I guess when I am tired I should rest. I will ask Dr. Goy about this when I see him.

8/12/08 - I went to Hackensack University Medical Center for a follow up appointment with Dr. Goy. He said that I am doing great and that my counts could not be any better. He was very up beat and finally addressed my long term prognosis question. "You just completed your first cycle and I said you are doing great... isn't that good enough?" Dr Goy is always one to give a tap on the shoulder, a knee in the leg, a small hug and even a small BOP on the head. All in keeping his patients as positive as possible. He does feel very confident that he can handle anything that comes our way. I also sense that he does not want me spending my energy thinking about anything but one day at a time.

In addition Dr. Goy addressed me feeling tired. He said that when I feel tired that I should push even harder to work out. That is how my body will best combat everything that is going on in me. With today being a bad sinus day I also learned of Dr. Goy's theory on dealing with sinus pain. He said "do you swim? Swimming and water are the best relief for sinuses". He suggested that I go for a swim when I get home.

I met another fellow Mantle Cell Study patient today. He is a 67 old man and he has completed all his treatments. He looked GREAT! He an his wife went dancing last night and plan to do so again tonight. It was great to see such a happy couple. True evidence of the light at the end of the tunnel.

I had some more good news today. I had originally been scheduled to be in the hospital for my next treatments on 8/30 but Dr. Goy gave me the OK to bring my daughter Jill to college on that day. He said it is OK for me to delay my treatments a few days.

Lastly, today was the first day I would start getting my Neupogen shots. These are shots that I need to get for 10 days after chemo. The interesting thing is that my wife Sue has to give them to me at home. Now this for sure was an adventure! Actually once we figured it out, with help of my daughter Jill, it was fine. We should be pros at this in no time.

My next appointment with Dr. Goy is 8/15 where I will be getting an out patient chemo push.

More to come...


http://mantlecell.blogspot.com/

My 1st Treatment

8/5/08 - I checked into Hackensack University Medical Center with out any issues. I was started on my pretreatment drugs right away and soon was receiving my first dose of a chemo. I was told that there was an 85% chance I would get nauseous but I did not and I made it through the day without getting sick.

The nurses are all great and the food was much better than I would have ever expected. It is much like ordering room services from a menu.

8/6/08 - The day started with a sample of blood being taken at 3:30AM. The nurse reiterated how well I did the day before. I will now be getting a different chemo medicine that will be given every 6 hours for the next 3 days.

Dr. Goy and the research nurse Judy stopped by to see how well I have been doing. Judy stops by everyday to check on me. Judy is a wonderful person and a great source of support to both me and my family.

Dr. Goy wants his patients to be as active as possible. He says that in real-estate it's "location, location, location" but here it is "move, move, move". He started me on a stationary bike that I would go on for 20 minutes, 3 times per day. I averaged about 6.5 miles of biking per 20 minutes. I may have been over doing it a bit but so far I feel pretty well and I can do it. I am told that once the chemo starts to kick in more I will likely slow down a bit. Only time will tell with this and I hope to be able to continue being as active as possible. Maybe the stronger I get now the stronger I will stay over time. I am no doctor but this seems to make sense.

Another thing that seems real important is my mouth maintenance. Chemo treatments targets the body's cells that are most active (both good and bad). This includes the month stomach and hair (this is why most people lose their hair). As it kills the good cells in my mouth it open me up to mouth infections that could cause painful sores. Keeping my mouth maintenance up will be a vital part of daily process.

8/7/08 - They took my blood about 4:00 AM. I worked out on the bike another 3 times. I would also receive two more does of the chemo (every 12 hours).

Today I met two other patients in the same clinical study. I think we will become good friends. One was in his last treatment cycle and he seems to be doing well. The other was in cycle 3 and was a very upbeat person.

I met with Judy again. She said all my counts are doing well but I should see a decline in my white blood counts over the next few days.

8/8/08 - They took my blood about 4:00 AM again. I also worked out on the bike 3 times. Received the last two every 12 hour treatments.

8/9/08 - They took my blood at 5:00 AM. Today I will receive 3 different chemo treatments and then I can go home. I again can not say enough how great everyone on the hospital staff has been to me.

All went well today and I was released on schedule. It is great to be home but I know this is just the beginning of a long journey and I need to take this a day at a time.

8/10/08 - I went to church today at St. Francis de Sales. I was good to get out and great to see everyone but I must admit that I am beginning to get tired. I will relax the rest of today and see what tomorrow has in store for me.

Over this week I have had many guests and well wishes from many of my family and friends. Even with the seriousness of my disease I can not help but feel how lucky I am.


http://mantlecell.blogspot.com/

The Eve of My First Treatment

08/04/08 - I will be checking into Hackensack University Medical Center for my first treatments tomorrow. It seems that my cough is getting a little worse each day. I know that the treatments will not be easy but I am also told that soon after the treatments begin my cough should start to go away. I do have a number of mixed feelings with starting my chemo therapy. I am definitely a little scared and nervous, but knowing that starting the treatments is the first step toward fighting my disease I also have feelings of hope and calmness. I guess this is when my pastor's prayer will come in handy:

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

Jesus, I believe in you and you will give me peace

I think I am going to be saying this prayer an awful lot.

I am glad that there have been a few days between having my dual porta cath put in and beginning treatments. It did hurt for a couple of days but if is now only a little pinchy due to the small butterfly stitches that will fall out on their own.

I continue to be very thankful for all the out pouring of prayer and support I received from everyone. I truly am very lucky to have such great family and friends.

I will enter my next post when I get home from the hospital over the weekend.

http://mantlecell.blogspot.com/

Dual Port Surgically Installed

8/1/08 - I had my dual porta cath surgically installed today by Dr. Kline. It is directly below by right collar bone. The surgery only took about 40 minutes. My right shoulder area hurts a bit and I have been given pain killers just in case I need them. I will take one to help me sleep but I doubt I will need any tomorrow. This will be where I will receive my chemo treatments through. It will definitely make life much easier on my veins.

This is me venting: I am finding that reading articles on the Internet could be more discouraging than anything. Last night I read that the average life span of someone diagnosed with Mantle Cell Lymphoma is 3 to 5 years. I am sure Dr. Goy would debate this claim being the whole point of the clinical trial I am in is to validate a method to obtain a long term remission. Also, each time I visit Dr. Goy I run into people who are in remission for an extended period of time. Maybe I am drinking from the "Keep Positive Kool-Aid" a little too much but maybe I am not. I certainly plan on having a conversation with Dr. Goy on what he feels my true prognosis is. I do know that when we get news that is not so good and my wife's eyes tear up, Dr. Goy says: "what are you upset about, this is all very treatable". There is no doubt that this is all in God's hands but there is no way I can except this 3 to 5 year message of doom.

On Tuesday, August 5th I will begin my treatments.

More to come...

http://mantlecell.blogspot.com/

Getting ready to begin my treatments

7/30/08 - I am not feeling so well today. My cough is bad and I have a constant nauseous feeling. My wife called Dr. Goy. He asked that we come in tomorrow for an appointment.

7/31/08 - I am feeling better, even before the appointment. I met with Dr. Goy and the research nurse (a very nice person). They reviewed the results from my PET and CT Scans. The cancer is only found in my upper chest area (the are about 6 areas where masses have been identified). The ones in the mediastinum are likely causing my cough. The fact that the Mantle Cell Lymphoma has not spread to other areas of my body is excellent news.

On a side note: The more I get to know Dr. Goy, the more I like him.

We now can get ready to begin treatment. Tomorrow I am have a dual porta cath put in as an out patient procedure. This will make it easier on me to receive the chemo treatments.

On Tuesday, August 5th I will check into the hospital for about 5 days to begin my treatments.

As I had said in an earlier post I am part of a clinical trial. The title of the study is as follows:
Phase I study bortezomib (VELCADE) plus rituximab-hyperCVAD alternating with bortezomib plus rituximab-high dose methotrexate/cytarabine in patients with untreated aggressive mantle cell lymphoma.

I can not believe I am saying this but I am looking forward to get the treatments going. I am told that soon after they begin my cough should go away.

More to come...

http://mantlecell.blogspot.com/

About me

In my first post I spent most of it describing my symptoms. What I failed to do was to was to give you a proper introduction of who I am.

As I said above, My name is Rich Franco. I am 47 years old, I am married (23 years), and I have two daughters (ages 18 and 15).

I am employed by a Fortune 500 company as a Director of Marketing and have been with them for 22 years.

I am a huge Jets and Mets fan. I would love to see them capture championships sometime in my lifetime (which I hope has many years to go).

My favorite past time is playing guitar. I have been playing in church for many years. Most recently I have been coordinating a Youth Music Ministry. I also have been teaching Religious Education for the past 12 years.

Between my family, friends, work and church; I have a fantastic support network.

My Pastor has given me a prayer to say when times get tough:

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

Jesus, I believe in you and you will give me peace"

Certainly, my faith will play a major role in helping me get through the next few months. I have every intention of putting up a good fight against Mantle Cell and emerging victorious.

I wait for my next appointment with Dr. Goy. My treatments should begin within the next week or so. Everyone says the key to my success is to KEEP POSITIVE.

More to come...

http://mantlecell.blogspot.com/

Embarking on a Journey

Hi, My name is Rich Franco. On July 17th, 2008 I was diagnosed with Mantle Cell Lymphoma. I have created this blog to journal my experience.

It all began on June 2nd, 2008. I was feeling pain in my chest, shortness of breath, and I had a nagging cough. I went to my doctor (Dr. Eric Hansen) who sent me for a chest x-ray and blood work. The chest x-ray came back showing enlarged lymph nodes so my doctor sent me for a C.T. Scan on the same day. This verified that there were enlarged lymph nodes and possible pneumonia. It was not clear at the time if the enlarged lymph nodes were caused by the pneumonia or if the pneumonia was caused by the lymph nodes. I was put on an antibiotic to try and knock out the pneumonia. Another C.T. Scan will be performed in about a month to see if the lymph nodes reduce in size. I will always be thankful to Dr. Hansen for taking such quick action.

In the meantime, I was sent to a pulmonary doctor who performed a bronchoscopy on June 9th, 2008. The results came back clear.

On June 27th, 2008 I had a C.T. Scan performed. My lymph nodes did not reduce in size.

On July 10th, 2008 I had a GI Series performed.
On July 11th I had a mediastinoscopy and endoscopy performed.

The GI Series and endoscopy were clear.

On July 17th, I met with the surgeon to get the results of the mediastinoscopy. This is when I was given the news that I had Mantle Cell Lymphoma. The surgeon immediately sent me to an oncologist (Dr. Michael Scola of Morristown Hospital). He was very reassuring. He did suggest that I get a second opinion with Dr. Andre Goy of Hackensack University Medical Center. I soon learned that Dr. Goy is one of the top experts on Mantle Cell in the country.

The morning of July 21st, Dr Scola performed a bone marow biopsy and a muga scan. Both came back clear.
On the afternoon of July 21st, I met with Dr. Goy. He offered me a place in one of his clinical trials. I discussed this with Dr Scola and he agreed that the clinical trial would be best for me. I will always be thankful to Dr. Scola for his compassion, advice and overall kindness. He was there for me on a day that was very difficult and he put the needs of me and my family first.

On July, 28th I had a PET Scan and another C.T. Scan. I am still awaiting the results.

My next appointment with Dr. Goy is August 1st, 2008.

I have officially embarked on my journey to fight Mantle Cell Lymphoma.

I continue to have a bad cough that is worse when I am talking or right after I eat. The doctors feel that the cough is caused by the lymphoma pressing against my pulmonary artery and/or esophagus

More to come...

http://mantlecell.blogspot.com/