Patient Profile: Greg Pacheco

Remarks from the 2009 ICDO Summit

Hello, my name is Greg Pacheco.  First I would like to thank all the presenters today as well as everyone who helped put this Summit together.  As a patient I truly appreciate what we are all doing here today.  First I would like to share with you a brief history and the challenges I have had with Castleman’s Disease as well as how we all can make a difference in Castleman’s Disease care.

It is 2003 I am 31 years old, happily married to my wife Charlyn for 5 ½ years, my son Brandon is 3 years old and my stepdaughter Kiley is now 10 years old.  We had just purchased our current home less than a year ago and I recently changed professions to work in the family hotel business.  My health history at this point in my life has been fairly unremarkable with the exception of being diagnosed with asthma at a young age and the typical broken bones and injuries that occur throughout one’s life.

At this time in my life my options were wide open with so many plans, providing and raising my family, starting a new job, settling in to our new home Charlyn had just recently started back to work.  Little did I know what I was about to face would change our life forever.

On March 1st I awoke early one morning experiencing pain in my chest.  I quickly went to my local family doctor and was given the standard tests.  At the end of the day I was diagnosed with pleurisy and “walking pneumonia” and was sent home with antibiotics and pain medication.

Over the next two weeks I seemed to be improving and continued my life as normal.  All of a sudden I woke up in the middle of the night and the pain in my chest was now much worse than it was before.  After consulting with my local Dr. the next morning I found myself at the emergency room.  I was quickly admitted to the hospital and was given a more extensive round of tests and morphine for the pain.  Everything seemed to be happening so quickly and I was in such a fog due to the morphine I felt like I was at the mercy of my doctors.

I remained in the hospital over the next 7 days and was seen by a number of specialists that had ordered a battery of tests.  To say the least I was a bit overwhelmed by the doctors and drugs I had been given, I have now been on heavy doses of morphine for an entire week and have gotten very little sleep.  I was finally sent home with a blanket of antibotics along with steroids and medication for the pain I was still experiencing.  At this time nobody knew what was wrong with me.

I continued to seek medical help and was seen by a number of local specialists over the next few months.  I was now extremely fatigued and could not even walk a block down the street without breaking out into a sweat and stopping for a break.  I went back to work on a very limited basis witch was extremely difficult.  I had been given a number of different possibilities from valley fever to just being “out of shape” as to the reason why I am so sick.  I had accepted the answers as the final outcome and decided to continue my life as it now was.

The summer passed by without a family vacation or much quality time together.  I was experiencing night sweats and losing weight, sleeping proved to be difficult.  As I would lay awake at night I distinctly remember watching the news as our troops were preparing to enter Baghdad. We were now in the holiday season and I was getting around a little better but still far from normal.  I have only been able to push myself to walk the block around my home and periodically make it into work just to try and keep up on my duties there.  I had thought my life had returned to normal but reality was my family was starting to feel the effects of my health.  Even though I accepted this new way of living Charlyn had not.

After much encouragement from Charlyn I found myself at a large clinic 2 hours from where I lived.  I was to spend a week there and go through another round of testing, which was the last thing I wanted to do after being poked a prodded for the last 6 months.  It was not long until the doctors there were able to pick up on something and I was told that we could be dealing with non-Hodgkin lymphoma, Charlyn and I had to process this in our minds over the next few days. A preliminary post biopsy diagnosis has now indicated a thymoma, this was a new term to us and we were not sure what to think.  After a few more days we received another diagnosis of fibrosing mediastinis, now we were completely confused and had no idea what to do.  Christmas was only a few days away and I was recovering from surgery trying to deal with the ordeal I was just put through.

We made it through the holidays and started the new year studying this rare disease.  I found a couple of doctors out of state that were familiar with the disease.  Charlyn and I soon found ourselves on our way to Tucson Az. for another consultation, this time we were extremely hopeful that I would be returning with a plan for our life to return to normal.  After only spending a few hours there we were sent back home with more questions; apparently I may have been misdiagnosed AGAIN.

In desperation my mother, Linda phoned an old high school friend, Bruce Ragsdale who is a local pathologist.  He along with the help of his colleagues, Central Coast Pathology Consultants was able to put together a case summary we could use to try and get a definitive diagnosis.  The summary had indicated the possibility of Castleman’s Disease but required more in-depth studies.  Finally in June 2004 I was correctly diagnosed with Multicentric Castleman’s Disease.  To add a bit of irony to the situation we discovered that Dr. Ragsdale had studied under Dr. Castleman when he was in pathology training.

Both Charlyn and I are now feeling hopeful due to the fact that there was not a cure for the previous diagnosis of fibrosing mediastinitis, we were quickly hit with the reality that the prognosis for Castleman’s Disease was even bleaker.  At the time all the research we could find indicated a 2 year survival rate and it had already been over a year since I started to experience symptoms of CD.  We were desperately looking for answers and were anxious to start treatments immediately.  I was referred to UCLA for another consultation and was now due to start a regimen of steroids and thalidomide.  We were relieved to have an option and quickly decided to take what I could.

My mom then decided to contact Jim Johnston.  Jim encouraged her to have me seek a second opinion.  I phoned Jim myself and he referred me to UAMS, the only problem was that I would have to travel to Little Rock from California.  I was due to start my treatments the following week at UCLA which I would have to delay if I were to go for another consultation which I had no desire to do so.  I was mentally beat and the prospect of another week of tests and consultations was the last thing I wanted to go through, I just wanted to get on with life for better or worse.  I am lucky Charlyn did not share the same attitude; she continued to look for more answers and encouraged me to get a second opinion.  That was now over 5 years ago and I am still here today to tell my story.  As I reflect back on my ordeal I now realize how fortunate I am in many ways, if I had been diagnosed early on I’m not so sure my fate would have been the same.  Since then there has been many more advances in the treatment options and research of Castleman’s Disease.

As part of my diagnosis process I learned that dealing with any rare disease you need to take your care into your own hands and become an expert on the disease.  I have not had any medical training but continue to find myself researching medical materials and reviewing my own laboratory and radiology findings.  As you all know we are all human, even you doctors, and need to always look for ways to improve.  Ask the difficult questions no matter what the answers may be.  In my case I now travel from California to Little Rock Arkansas for my CD treatments due to the fact that we asked for a second opinion (or was it a third or fourth?).  The first year of my protocol required me to be in Arkansas every other week.  All this was done to improve my quality of life, to say the least Charlyn, Kiley and Brandon all had to make some accommodations.

Over the years I have been able to speak with many others who have been diagnosed with a number of rare diseases and their stories all begin much like mine has.  Throughout my own personal experience I was given a number of options, many would have left me with permanent disabilities due to the side effects which I was willing to accept.  For one reason or another many are not able to obtain proper care, if one day we can find out what causes CD hopefully there will be better alternatives for everyone that has been affected by this disease. Several of the decisions we are forced to make come out of desperation and the feeling of lost hope. After today’s presentations I feel very encouraged that we are very close to finding out what causes Castleman’s Disease.

Being on the outside looking in I am very encouraged with the progression of Castleman’s Disease care.  I was lucky enough to attend the International Castleman’s Disease conference in New Mexico in 2005 and I was pleased to see the willingness to share information between medical professionals.  There is a very limited amount of information available due to rarity of the disease and I think it is extremely important that this philosophy be adapted.  Sharing information will only help to quickly progress finding the cause of the disease and give patients and their families hope for a cure.

Due to the fact that were are all now sitting here in the same room sharing information we have already made a difference in Castleman’s Disease care.  Looking back to the time when Jim was first diagnosed in 1989 and the amount of information, or lack of that was available to the alternatives we have now I feel there has been great advances made.  We now have a wealth of resources and information available from ICDO as well as a research laboratory that performs research exclusively for Castleman’s Disease, with the addition of the clinical research we are now willing to share here I believe these are critical steps in the right direction to properly treat and cure this complex disease once and for all.

In closing I hope to walk away from here feeling as if we can all make a difference in Castleman’s Disease care.  Everyone involved in today’s Summit has made a significance impact to Castleman’s Disease in one way or another. I would like to recognize Jim’s efforts in bringing everyone together once again to share information and his ability to reach out to patients and direct them to the best treatment facilities.  Personally I have become part of a non-profit organization that is dedicated to raising funds to perform research and bring awareness to Castleman’s Disease.  More importantly I believe it is the support that comes from the families of Castleman’s Disease patients who make to biggest difference.  As a patient throughout my diagnosis process I did not have the energy or desire to seek additional medical help.

Just the other day I was speaking with my mother about a family friend who is going through a difficult medical situation and has very little support from her family.  We try and encourage her to seek out various opinions but this requires her to do most of the research herself, she is feeling sick and has very little energy between the chemotherapy and multiple tests she goes through I cannot fault her for not wanting to seek out more options.  If it were not for Charlyn I am sure I would not be here today.  In addition Kiley and Brandon have to make a number of sacrifices, I am often away from home for days at a time due to my medical conditions and this takes from quality time away from them.  I am also reminded each year around tax time when I am itemizing our medical deduction why we sometimes run short on cash for that extra little something.  As in my case it took a lot of people just trying to do the right thing to truly make a difference; with everyone working together we can find a cure and give hope back to all who have been told there is none.

-December 2009