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Patients Against Lymphoma


Patient Experiences & Guidance

Steve: "Un-panic" and find a doctor you trust  (MALT)

When I was diagnosed with MALT, my Oncologist said I was stage IV because it was in a major organ (my lungs). He wanted to treat me with CHOP-R chemo but changed this to radiation after discussing with "a committee". (Apparently, Baylor College of Medicine has a review board to discuss best treatment options for patients).

When I went to the radiation doctors they said I was Stage IE being that it was confined to my lungs only and "external" from the lymph node system.

I found it interesting they rated it differently.

I also went to another Oncologist for a 2nd opinion mainly because he was closer to my house. He did NOT agree that I had Large Cell in addition to the MALT even though we were both looking at the same pathology report. (AND I am not a doctor). He wanted to treat me as if I had Follicular lymphoma, which would have greatly [suppressed] my immune system.  

After discussing with my Baylor doctor (who "implored" me to do a simple Google search), I realized this was not the best way to go. I did find out later from the radiation doctors that this is a chosen method if radiation and CHOP-R did not work. 

Bottom line - Find a doctor you trust and don't be afraid to ask questions for clarification until you feel comfortable with the treatment options presented.

I shared this with Nancy, but I would also like to share with you a document written by Kevin Berry. Kevin is a NASA Engineer in FL and during a routine physical in 2005 found out he had Mantel Cell Lymphoma. Kevin went thru a bone marrow transplant in August. My Sister-in-Law works with Kevin and got us in touch with each
other. He wrote the following document titled "Unpanic" for a local newspaper. This document helped me to address my "opportunity" from day one and I present it for each of you. All I ask is to give Kevin the credit and pass it on to new "friends that join our network".

Houston, TX
Lung MALTer

By Kevin Berry
Mantle Cell Lymphoma Patient

As Susan Smiley mentioned in her farewell column, I have a new "opportunity" in my life, Mantle Cell Lymphoma. This type of non- Hodgkins lymphoma is unfortunately one of the rarer and harder to treat kinds. I'm lucky to have an incredible wife, huge support network, great doctors, and it's 2006. A few years ago, the story
would have been much grimmer, but research is moving so quickly there's a lot of hope to be had. 

The night I was diagnosed, I got a phone call from a good friend, who's recently undergone his own battle with cancer. He had two pieces of advice which are making the difference in my own fight. I've since added a third item. Please cut this column out and put it somewhere you can find it quickly. Sometime, either you or a loved
one is going to need the advice I share below.

1. Stop Panicking
2. Activate Your Network
3. You Are In Charge

"Stop Panicking." By the time you hear these words, the panic is already loose in your mind. Try hard to un-panic yourself. Many people are walking around, healthy, after being told they have 3 to 6 months to live. Internet sites use broad statistics which make things seem worse than they might be. There are over 300 kinds of cancer, and each has 4 stages. Plus, YOU are YOU, not someone else. Each case is unique, and your prognosis is heavily dependent on #2 and 3 below.

"Activate Your Network." One of my first visits was to my minister. He told me, "Just by showing up here today, telling the receptionist why, and talking to me about it, tells me you are going to win." He said many otherwise strong, outgoing people just shut down when they get the news, don't want to talk about it, and may
even refuse treatment. By "going public" with the news your odds of beating the disease are much better. As word spreads, you will find you've built an incredible network of people who care about you, want
to help, and will put you in touch with other survivors of your particular cancer. You've done so many things for people around you, and they are eager to help. Accept it gracefully, and use it without reservation.

"You Are In Charge," in two ways: Your Attitude and Your Treatment. Mental attitude makes a huge difference. You have been cursed and blessed with this disease. Cursed, because no one deserves this awful, drawn out, potentially fatal disease that will cause emotional pain to your family, friends, and neighbors. Blessed because your relationship with those same people will be reset, and you'll find out how loved you really are. You'll get square with God, learn to live by faith, and present yourself as a model of positive thinking and living right.

You can approach your treatment in one of two ways: "Cattle Call" or "Leader Of The Pack." In the cattle call approach, you get in line, do what the first doctor tells you, don't ask a lot of "why" type questions, and moo-ve along with the crowd. Following this approach will get you the "average" remission, cure, and survival rates. In the (preferred by me) approach, you shop for oncologists until you find one who puts you, individually, first. You research all the treatment options (using your doctor as a first source, but checking via a myriad of other  sources). You lobby for treatments to maximize your chances, push for cutting edge or "generally agreed to
but not yet statistically proven" protocols, and generally win for yourself a customized treatment plan that puts you in the top 5% of the statistical curve.

Quick story: When I was sent to a National Cancer Institute Comprehensive Care Center (one of the leading hospitals in the U.S. for Lymphoma) the world class doctor told me I was looking at a 50/50 chance of being cancer free in 5 years. I told him: "That's not good enough. What do you have that will give me the 30 years I need?" He was shocked. But, within 5 minutes, he'd "remembered" a new treatment I might use. (Of course my wife and I were sitting on a list of several we'd found on official government or physicians association web sites). After we'd finished his treatments, plus the bonus one we'd helped him recommend, I asked again. Guess what? Another "new"  treatment had just been approved. (Of course we already knew that.) 

So I wound up with 4 types of treatment instead of 2, and my odds went from 50/50 to "considerably better than that." I hope and pray you'll never need the advice I present here. But, in the likely case you will, I hope you'll remember where you put this, and use it to help win the battle.

Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright 2004,  All Rights Reserved.