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Post details: Background

07/24/05

Permalink 10:46:23 pm, Categories: Background, 443 words   English (US)

Background

I was diagnosed with Mantle Cell Lymphoma (MCL) on 6/14/05, after biopsy of a tonsil I had removed. There was no other evidence of MCL that I could detect.

Further tests (CT, PET, Bone Marrow, Colonscopy, Endoscopy, and blood work) showed that there was evidence of MCL in my bone marrow, colon, various lymph nodes, spleen (enlarged), etc - basically, the typical MCL story.

We debated two treatments:
(1) Memorial Sloan Kettering Cancer Center (MSKCC) - RCHOP, followed by RICE, followed by a Stem Cell Transplant, followed by Rituxan.
(2) Hackensack University Medical (HUMed/MD Anderson type protocol) - R-Hyper CVAD.

Both treatments sound promising, and both doctors were excellent. MSKCC has an excellent reputation in cancer, and HUMed has an excellent reputation as a hospital, growing as a cancer center (we believe the recent addition of Dr. Goy as the head of Lymphoma will be key).

We decided on R-Hyper CVAD due to it's high response rate. Additionally, I'm young (38), and expecting that to play in my favor in dealing with the toxicity of R-Hyper CVAD.

I'm beginning R-Hyper CVAD on 7/25/05. 6 Cycles expected. No stem cell transplant if the initial results are positive.

This blog is intended to serve 3 purposes:
1) To allow me to track my experiences to I can know what to expect for future treatments, and monitor my progress
2) To allow me to share what's going on with family and friends
3) To allow others to see what I'm experiencing, so they may have some insight as to what to expect if they go down this line of treatment. Understanding of course that chemo is very personal and everyone handles it differently, but I wanted to have some barometer as to what to expect, and this should hopefully allow others that benefit.

Additional comments on my background:
- I was 38 when diagnosed
- I was in good physical condition
- I was on the Atkins diet from 4/03-11/03 'hard core', dropping about 55 lbs. - coupled with excercise. (The Atkins diet I did involved vegetables, chicken, fish, and some meat - it did NOT involve bacon double cheeseburgers for breakfast, lunch, and dinner)
- I'm an active cyclist. In season we'd ride 32 miles one night a week, and I'd be on a trainer 4 additional days a week for at least half an hour and up to an hour. We'd also do some 50 mile 'events'.
- I'd had a colonoscopy in 2000 (as my father is a colon cancer survivor), and I wanted to begin early detection (I was 33 at the time). 2 non-cancerous polyps were found and removed.
- The swollen tonsil was the only way this was detected.
- I've never had any other significant medical events. This was the first time I'd ever stayed overnight at a hospital.

Comments:

Comment from: Tim [Visitor]
Good luck with the treatments. I have spoken to Vinny about dealing with cancer and all. I went through thyroid cancer about 9 years ago.

What is it about Vinny and becoming close friends with him that makes *us* sick?

Be well.

Permalink 07/26/05 @ 12:06
Comment from: Christine O'Brien [Visitor]
Honey....I love you and I am with you every step of the way! You WILL beat this!!
Love,
Christine
Permalink 07/26/05 @ 23:30
Comment from: dkmah [Visitor]
Lots of prayers and love to you. You will do great.
Love
deb ken liam and conor
Permalink 07/26/05 @ 23:43
Comment from: Andy [Visitor]
Fight hard and give it hell. We know you can beat it. Ellen and I are thinking of you every day. Let us know if there's anything we can do.

Andy
Permalink 07/27/05 @ 00:01
Comment from: Pete [Visitor]
There is no doubt in our minds that you can beat this. Be strong and use the support of friends and family. We’re all in this together and we’re here for you!

Pete, Karin, Derek, and Ty
Permalink 07/27/05 @ 06:55
Comment from: The Grill Family [Visitor]
Yes, you will beat this! Our thoughts are with you and accompany you on your way.
Let us know, if we can do something for you or your family.

All our best wishes,
Claus, Claudia and the kids
Permalink 07/27/05 @ 10:29
Comment from: The Savas Family [Visitor]
Our thoughts and prayers are with you every step of the way. You are a strong son-of-a-gun and will beat this! We think of you often......please let us know if we can do anything! Sending positive vibes your way..........

All the best,
John,Stephanie,Brynn and Michael
Permalink 07/27/05 @ 10:42
Comment from: Dad [Visitor]
There is no question in our minds (Mom & Dad) that you will win this battle,especially with Chris, Emily and and John 3 routing for you. Remember Turkey Swamp? We managed to survive that. Now about the Chipmonk....!
Permalink 07/27/05 @ 15:48
Comment from: Linda [Visitor]
Hi John! It was so good to see you yesterday. You're doing great- we're here for you. Love, Linda, Jeff, Allison, Lauren and Brian
Permalink 07/27/05 @ 22:25
Comment from: Esther & Doug [Visitor]
Sending all of our love. You are going to get through this fine!
Love, Esther, Doug, Ellie & Hannah
Permalink 07/27/05 @ 22:58
Comment from: Claus [Visitor]
John
I know that you'll get rid of this. You get the world best treatment and you have the right mindset. That WILL do the trick!
Plus you have tons of people thinking the same way!
I'll buy you a case of German beer when this is over, ok?
All the best, thinking of you,
Claus
Permalink 07/27/05 @ 23:17
Comment from: Andy Bodnar [Visitor]
Hi John!

You can do it! We're confident you can beat this! Keep up your positive attitude and you can make it happen. Please let us know if there is anything we can do to help.

Love Andy & Linda Bodnar
Permalink 07/28/05 @ 08:11
Comment from: The Schnoor Family [Visitor]
JOB - All of our positive thoughts and prayers are with you - give 'em hell! STAY POSITIVE!!!!! Anything we can do - do not hesitiate.

Love,
Rob, Jenn, Ceejai and Rett
Permalink 07/28/05 @ 08:51
Comment from: Janna Ferrer [Visitor]
John,
Your strentgth and courage is an inspiration to me as well as all those who come in contact with you. You are in my thoughts often, how could you not be. I know one thing, you better be done with all this stuff by Nov 30. We all hope to be clinking glasses , even if it is cider, to celebrate the success of your journey. Love , Janna
Permalink 07/28/05 @ 09:52
Comment from: The Richards Family [Visitor]
John -- I know you will beat this thing. Debi and my thoughts and prayers are with you, Chris, Emily and John. If there is anything we can do,let us know. Love, Larry, Debi, Jessica & Jamie
Permalink 07/28/05 @ 11:38
Comment from: The Juro Family [Visitor]
John,
With your positive outlook and a great support system like your family and friends, we all know you'll get through this. Even though you're one of the nicest guys I know, you can be a tough SOB when you need to be. Give em Hell!
Love, Todd, Laura, Nathaniel & Morrison
Permalink 07/28/05 @ 17:25
Comment from: Brian Bodnar [Visitor]
Yo john hows you doin

Me and da boys at the plant sur do miss ya. da boss says fer me to tell ya to get all better an stuff like real soon now.

he told me to says to tell ya that if any of them der docs or nursess give ya any trouble, we can send lefty and a couple of boys down to set em straight if you know what I mean. Dis typein wiff 1 finger is fer der boids.

Vinny said if you would like he can send down some of his famous cannolli and rember if them guys at the joint I mean hosipitel trys to get smart wiff ya well tommy two toes will come have a little chat wiff em and make em an offfer dat they cant refuse!

I dont meen to get all sentmentel or nothing and stuff withca or nothing, but you take care of you self an get all better now, cause everyone misses and you and tings just aint the same here. hey some of boyz are even haven to work some now aint that a hoot.

Love,
Brian
Permalink 07/28/05 @ 20:25
Comment from: M. Bodnar [Visitor]
John, Give it hell Cous. They say keep your chin up, I say BULL.... keep it down that way you always see your battle coming, and you dont leave your self open to that knock out punch. Sounds like your time on the stationary bike and the team of experts you have consulted are exactly that. Always fight if you have to. Heart and character are the traits that only few can have and are only truely tested in face of the toughest battles. Lance has said it best LIVESTRONG. You the man. Miles & Marisa
Permalink 07/29/05 @ 01:56
Comment from: Mike [Visitor]
go get 'em John
Permalink 08/01/05 @ 06:58
Comment from: Emanuel Psyhojos [Visitor]
John,Andy and Ken just shared your news with me. Definitely a shock but good to read this site. Sounds like you're in great hands and have a great support system. I'm looking forward to you beating this and for you and Andy to again run me into the ground on a long bike. Let's do it soon! Take care. EJP
Permalink 08/01/05 @ 12:24
Comment from: Nikki [Visitor]
John,
Remember to stay positive and know that you will beat this, that's what worked for me. From what I've read you have a tremedous amount of friends and family supporting you, well add one more to that list. You'll beat this in no time. Take care and if you guys need anything please don't hesitate to ask.
Love Nikki
Permalink 08/01/05 @ 13:30
Comment from: john mac [Visitor]
Hey JohnnyO!
Just a line to let you know that Nova Scotia's pulling for you. I've been touched very personally by cancer over the past couple of years and I can tell you ABSOLUTELY that attitude is half the battle. Hang in there buddy...it's clear that you've got the right attitude and the support and guts to beat this!
Thinking about you...
Permalink 08/03/05 @ 18:54
Comment from: Kunal [Visitor]
Hello John,

I'm truly amazed with your positive attitude and trust that you've the will-power to survive the toughest of challenges.

A human being's greatest wealth is "goodwill, respect and support" of family & friends. You certainly, have amassed a lot of that wealth. I've no doubt that you'll come out a winner at the end of this rocky road.

If there is anything that I could do to help, please do not hesitate to ask.

Cheers,

- Kunal
Permalink 08/04/05 @ 14:12
Comment from: Kimberly Culbert [Visitor]
John,

I thank you for posting this site. My father (although 20 yrs. older than you) was recently diagnosed w/MCL, Stage IV and is receiving the R-Hyper CVAD treatment as well (just completed his 2nd cyle (a)). He hasn't really been open to sharing his feelings and experiences and it's good for me to hear from you what he may be going through. I wish you the best of luck in this fight, it's obvious that you are very loved and have lots of support!!

Thanks!!

Kim
Permalink 08/05/05 @ 15:38
Comment from: Karen and Stu [Visitor]
John,

Our thoughts are with you. We know you will beat this and be with us to celebrate our wedding. Please let us know if you need anything. We are here for you and uour family. Keep up the positive attitude.
Karen and Stu
Permalink 08/05/05 @ 20:02
Comment from: Sam & Cora Jallad [Visitor]
John,
This is Sam & Cora, Alex's friends. Our thoughts and prayers are with you. We wish you the very best. We are very confident you will win this battle.
Permalink 08/08/05 @ 11:16
Comment from: Bill, Liane, Nikolos, Sofiya and Anatoli [Visitor]
John,
Our thoughts and prayers are with you always. You are so strong, we have not doubt you will beat this.
Your spirit, your attitude, your will power to survive will bring you through this along with the amazing family you and Christine have created.
Anything you need, anything...please call us.
All of our love and support,
Bill, Liane, Nikolos, Sofiya and Anatoli
P.S....any by the way...you can call once in a while so we can all get together you know. :)
Permalink 08/08/05 @ 16:25
Comment from: Patty & Joe [Visitor]
John,
You are in our thoughts constantly. Our love and prayers go to you, Christine, Emily, & John. Stay positive, attitude is everything. We're right up the road, if you need anything just call.
Love,
Patty & Joe
Permalink 08/17/05 @ 09:27
Comment from: Linda Bedford [Visitor]
Hey John,

I'm so sorry you have to deal with this. My prayers are with you, and I wish you all the best of luck and strength. Be strong old friend - you can do this!!

Please let me know if there is anything I could do to help,
Lin
Permalink 08/22/05 @ 21:49
Comment from: Stroup Family [Visitor]
John:
I know I shouldn't be, but I am blown away that a guy as young as you is battling this type of disease. I give you lots of credit for sharing the experience with everyone. Reading about MCL generally, the attitude you have about fighting it, and the support structure you have, all make me feel confident that you will be beat this and be telling us some war stories at the next Steak Night or golf outing. Please know that our thoughts and prayers are with you and your family. I look forward to seeing you soon. --Keith
Permalink 08/23/05 @ 09:56
Comment from: Rachel [Visitor]

Dear John,

Just wanted to send you my love and my prayers
I myself know how it feels, but if I can beat it, then you definitely can do it too.

There is one more thing that I would like to state:
“The absolute essence of human life consists of 2 fundamental points:
Reason and Individualism”
You have always had the “Individualism” and you have so many reasons to be strong!!

Sending you all the positive energy, that I can give

With all my love and best wishes,
Rachel

P.S. Whenever you up to it, give me a call – we can chat 
Permalink 08/24/05 @ 15:32
Comment from: Jessica Jewell Ogilvie [Visitor]
John - Please know that we're thinking of you, Christine, Emily & John during this tough battle. Sounds like you have an amazing attitude and all the strength you need to beat this. Love, Jessica & Tim
Permalink 09/15/05 @ 16:32
Comment from: Lisa Johnson [Visitor]
I have found your blog so enlightening and informative my brother recently has been diagnosed with MCL he is 45 with three small children. It's been such a trying time and your blog is the best thing! Please keep it going
Thank you,
Lisa Johnson
Chatsworth, California
Permalink 10/07/11 @ 16:48

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Background

These are my trials and tribulations of R-Hyper CVAD treatment for Stage 4 Mantle Cell Lymphoma

At the start of treatment (7/2005) I was a 38 year old male in good physical condition who was diagnosed with Stage 4 Mantle Cell Lymphoma on June 14th, 2005. I chose to begin R-Hyper CVAD treatment in Hackensack, N.J., under care of Dr. Goy - previously of MD Anderson in Texas, and prior to that Memorial Sloan Kettering in New York.

Thanks to my brother Alex for setting up this Blog!!

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