CHEMOTHERAPY

Chemotherapy - Abbreviation: CHEMO Definition: Treatment with drugs that have a specific
toxic efect upon the cancer, usually interfering with cell reproduction. Most
are given by IV but oral drugs may be added.

My Chemo of choice is called (ABVD) it is a combination of four different drugs.

Number of treatments I have: 4 cycles (8 individual treatments once every two weeks for total of 4 months) 1 Cycle= 2 treatments. Method IV. Lenght of treatment 5-6 hours each. Treatment is differnet for each person and stage. Usually ranging from 3 cycles up as many as 8 or more cycles in later stages of disease.

-Adriamycin (Doxorubicin, Rubex)

Common Side Effects:
* temporary blood count changes
* nasuea or vomiting
* hair loss
* pink/red urine for 24 to 48 hrs
* sore mouth and gums

Uncommon Side Effects:
* changes in heart muscle
* darkening of soles and palms
* changes in nails
* fertility changes
* redness of skin

- Bleomycin (Blenoxane)

Common Side Effects
* changes in blood count
* fever and chills
* skin changes
* sore mouth or gums
* hair loss
* nausea
* decreased appetite
* Fatigue

Uncommon Side Effects
* changes in lung function
* pain at tumor site
* allergic reaction

- Velban (Vinblastine)

Common Side effects
* nausea or vomiting
* blood count changes
* jaw pain
* hair loss
* reflex loss
* sore mouth gums
* tingling toes and fingers
* changes appetite

Uncommon Side Effects
* low sodium in blood
* increased urination

-Dacarbazine (DTIC, Dome)

Common Side Effects
* nausea or vomiting
* blood count changes
* loss of appetite
* metallic taste
* flu-like symptoms
* hair loss
* pain at injection site

Uncommon Side Effects
* diarrhea
* allergic reaction
* change in liver
* facial flushing
* sensitivity to light
* constipation
* drowsiness
* increased thirst

STAGING

March 28th, 2005 I met with Dr. Johnson in Wichita at the Cancer Center of Kansas. This was my first chance to find out information on the cancer I had and what the treatments would be. The doctor asked me if I knew what I was dealing with? I told him I only knew what I had learned on the internet. He said I want you to know first of all is that this cancer is curable. However I must also say that nothing in onocology is 100%.

He then examined the area of my neck where the cancer was present. He asked for history of how long I had lump and how I was diagnosed. He stated that it was highly unlikely that I had Hodgkin's for the 12 years I had the lump. He said that the lump may have been something else and the cancer just started in the same area. He also asked if I had any symptoms prior to diagnosis. I advised I had fatigue and night sweats. Then came the fun part. He advised that they had to do a bone marrow biopsy to see if cancer had spread into the bone. For those of you who have not had a BMB be thankful. It is absolutely the most painful thing I have experienced.
Blood was also drawn for lab test. I was then scheduled for a CT scan of my abdomen and pelvic area and a PET scan. These test were to check if cancer had spread to these areas. I was also scheduled for breathing test and echocardiogram to make sure my lungs and heart were strong enough for chemotherapy. At this time the doctor stated that I was staged at a stage I until results of test came back.

I was told that was was going to have Chemotherapy for 3-4 months and they were going to follow up with radiation. The number of cycles depended on staging after test.

On April 1, 2005 oh how I wish this was a April fools joke but it was not I met with the doctor to get the results of my test. The PET scan showed that the area with cancer in my neck was large and had started spreading up the side of my neck. It also showed a small area below my diaphram in my lower back area. I was told I was a stage I to a stage II based on area in my neck and that clinically was a stage III because of area below my diaphram but he was saying stage II since area was so small. He advised the treatment was the same no matter what he staged me at. He did say that I was going to have to have 4 cycles of chemo instead of 3 and radiation would follow. My bones came back clean. I started my first Chemo treatment after the appointment.

DIAGNOSIS

My diagnosis of Hodgkin's Lymphoma started with a lump on the right side of my neck just above the collarbone. This lump however was nothing new and goes back in history to my senior year at Kansas State University 1993. A grape sized lump appeared suddenly above my collarbone. The lump was looked at by university doctors and some blood test were completed. The results were a fatty tissue deposit or something not to worry. Through the years I lived with the lump that would change in size from grape size to about golf ball size. It never did stay big for long periods of time. From 1993 to 2005 I had it checked at least once annually and by about 5 different doctors throughout this period. I was always told not to worry if it was something serious you would be sick by now or it would keep getting bigger. Im not a doctor made sense to me. January 2005 I went to the doctor for an unrelated sinus infection and asked the doctor again about the lump. At this time the lump was getting larger for longer periods of time and was causing some discomfort. I had an occasional night sweat and some fatigue at this time. I told the doctor. He assured me all was well and said he would run lab work on my blood to make sure. After the lab work the doctor advised me that everything looked good and that my white count was off a little but not enough to cause concerns. So I went home thinking I was fine and I would just live with the lump some more. In the last year I noticed something different I just wasnt feeling right. Not something that was drastic but just not right.

The last week of February 2005 I woke on two different nights with drenching night sweats it was scary the bed was wet my hair was soaked. The next week my lump started getting bigger and stayed big. On the evening of March 2nd it looked like I had a large egg under the skin. I made an appointment to see my doctor on March 3rd. My doctor was gone and I saw one of his partners. I told him the story of the lump. He advised he wanted to have test done immediately to find out what was going on. He ordered Ct scans that afternoon. I was a little in shock because of all the concern there had never been any before. I thought Im ok I had this for 12 years it is nothing.

Friday March 4th I recieved a call from my doctor. He said the Ct scan of your chest came back ok. However the scan of your neck showed some spots of concern. He advised he was getting me in to see a ear, nose, and throat specialist immediately. On the afternoon of the 4th I met with the specialist. He examined the lump and stuck a scope up my nose and down my throat. He then looked at the ct scans which I had brought to him. He told me that the scans showed what appeared to be a mass of lymph nodes. He told me that he was going to do a needle biopsy of the mass. That hurts. He said that the results would be back on the following Tuesday. For anybody that has been through this you know four days is an eternity. Before I left I asked him what he thought? He said it could be a lot of things (Inflammation, infection, etc) but we cannot rule out a maglinant cancer. However that is very unlikely with your age group. Some relief.

Tuesday went back to specialist. He said biopsy came back showed lymphocyte cells. Basically it is a lymph node. I asked what that meant. He said it means there is something going on somewhere but we dont know what yet. I ask what is something. It could be anything but we cant rule out cancer. Great. He then scheduled me for an open biopsy.

On march 1oth I had surgery to remove a lymph node the size of an egg. I was told result would be in the following Tuesday. Another wait from hell. Tuesday came and no results. Finally on Thursday March 17th the results were in.

I remember sitting in the doctors office waiting for him to come in it seemed like an eternity.
He finally made it and briefly looked at my wound from surgery. I remember him saying everything looked good with the healing. Then he sat down and said we got the results of your biopsy. You have what is called Hodgkin's Lymphoma. I remember staring at him as thoughts ran through my head. I was thinking whats that, thats not good, I think thats cancer, am I going to die. My response, " Thats not what I wanted to hear". The doctors response, "No thats not what people like to hear but its not the worst news you could get". Then he stated that this is treatable but the road to get better will be long and a hard one. The doctor then scheduled me for an appointment with a cancer doctor. He said they would run numerous test to determine a stage of the cancer and treatment options. Wow what a St. Patricks Day.

EDUCATION

Hodgkin's Lymphoma is a rare cancer of the lymphatic system. It comprises less than 1% of all cancers. About half of the patients with Hodgkin's express proteins associated with the Epstein-Barr virus (Mono). In most the cause is not known. It occurs more in men and mainly young adults. 1 in 100,000 people will be diagnosed. Survival rate has increased from 50% to 75-85% due to combination chemotheraphy and radiation treatments.

Classic Hodgkin's Disease is divided into four subtypes

1. Nodular sclerosis Hodgkin's Disease (NSHD) 60-75% of cases
2. Mixed Cellularity Hodgkin's Disease (MCHD) 5-15% of cases
3. Lymphocyte depletion Hodgkin's Disease (LDHD) 5-10% of cases
4. Lymphocyte rich classic Hodgkin's Disease (cLRHD) 5%(I HAVE)

Nodular Lymphocyte predominant Hodgkin's (nLPHD) 5% of cases

Diffuse Lymphocyte Predominant Hodgkin's (dLPHD) Rare

Staging

Stage I : HD involves one lymph node group or structure.

Stage II : HD involves two or more lymph node groups on same side of diaphragm or it involves
one lymph node group and involvement in one organ.

Stage III: involves lymph nodes on both sides of diaphragm or has moved to an organ or spleen.

Stage IV: Has spread through bloodstream to one or more organs or areas outside lymphatic
system.

A or B Can follow stage. Ex. Stage IIA or Stage IIB). A= no symptoms B= Symptoms present

Symptoms include

1. Swelling of lymph nodes
2. Fever
3. Night sweats
4. weight loss
5. fatigue
6. Itching

Treatment

1. Chemotherapy
2. Radiation
3. Stem Cell Transplant
4. Biological therapies
5. Surgery

This is basic generic information for more detailed visit a lymphoma site.

INTRODUCTION

First of all I would like to share with you some of the reasons I decided to create this page. My first thought was that I wanted to document my experiences while conquering this cancer known as Hodgkin's Lymphoma. I emphasize conquer because if you don't conquer it the cancer will conquer you. Another reason was that when I was diagnosed with this disease I knew nothing about it. I searched every website I could to try to find as much information that I could. I would like to help educate newly diagnosed people and family members of people fighting the disease. I wanted family members to be able to follow me through my treatments and to have all the information they need. My final reason was that I wanted to express to people how vaulable life is and how quickly it can change. Cancer is not the end but a new beginning.

Jason