View Full Version : Stage 2B Persistent Nodular Sclerosing Hodgkins Disease Lymphoma

02-09-2007, 07:43 PM
First I want to start off by saying this in advane. I just wanted to share my story. I don't mind telling people my story or answering any questions than anyone may have. I just don't care to give advice or an opinion unless asked.

On Aug 20, 2004, I was diagnose with Hodgkins Disease. After a needle biopsy the results we inconclusive, so off to surgery I went. To help you understand a little more, the mass in my chest had reached the size of a cabbage ball. I had no lung capacity on the left side since the mass was compressing it into my back. I was fairly lucky in the fact that the mass had out grown its blood supply and therefore was dying. The needle biopsy resulted the way it did due to nacrotic tissue. I had the mediastinal biopsy a few days later and the pathology report stated that I had Stage 2B (based on my symptoms and the size of the mass) Nodular Sclerosing Hodgkins Disease. I was then prepared to start chemo. I underwent 12 weeks (1day per week) of a chemo regimen call Stanford V. My last treatment of this was the monday before Thanksgiving. I was required to wait 4 wks before I could start radiation, since this would be xmas/new years I waited one extra week. Before starting radiation my doctors were happy to report that the had shrunk by 40%. During my waiting period I was tattooed in three place the dots are truely not visable unless you are looking for them. I then began my 6wks of radiation this was daily. My body or mass I should say didn't respond as well to the the radiation as the doctors had hoped it would. I then had to wait 2mths before I had another pet scan to see if the active cancer cells were gone.

After 2mths of waiting I returned for my pet scan. There was still a small amount of active cells remaining which I honestly had expected. I was asked to come back in July to wait just alittle longer. I returned in July for another pet and really did not expect any change. I had prepared to find out it was still there but what I was not prepared was for the doctor to tell me it had spread. The doctor scheduled an appointment for me to have another needle biopsy. This was to find out if it was the same strand or a new set of cancer cells. The needle biopsy again was not very helpful in fact it worried the doctors that it may have transitioned into Non Hodgkins Lymphoma. If you are not familiar with the two Hodgkins disease has a very high curability rate, Non Hodgkins has a much lower curability rate. I then had another mediastinal biopsy. It was confirmed that it was not NHD it was just HD. This was a great relief, but I was then diagnosed with Persistent HD. Aug 26, 2005, I had went to see the doctor and he recommended my treatment be high dose chemo with a Stem Cell Transplant. Since the hospital didn't have a physician on staff that was qualified for this I had to see another doctor. I had to choose between 2 hospitals. I am from the New Orleans area and my choices were Tulane or Baptist(Memorial) Hospital. Since Tulane is a learning hospital it is harder to be here since I would had to meet their requirements for a study, so I chose Memorial. When I left from my appointment on that friday I had an appointment scheduled with a doctor at Memorial Hospital on August 29, 2005.

I have plenty more to write so I will finish updating tonight or this week.

02-10-2007, 04:19 AM
Congratulations. I had just finished up my treatment when you were diagnosed. I'm glad things are going well for you. :thumbsup2

Mackey Mouse
02-10-2007, 06:14 AM
Wow..thanks for sharing your story....it is incredible when you read what others go through to beat this disease.....please do continue your story when you have time, I would like to know how it has turned out for you....and I am sure others as well... Keep up the good work, Hugs!!!!

02-10-2007, 09:09 AM
The date was Sunday August 28, 2005 and a Mandatory Evacuation was issued at 4 o'clock in the morning due a Cat 5 Hurricane. That's right Katrina was heading straight for us.

Now to back track just a little bit. Aug 12th I signed a lease on a house I had been living in an upstairs apartment and decided that I did think I would be able to do stairs and no first floor apartments were available. My second mediastinal biopsy was scheduled for 8/16. My great grandmother had passed away earlier in the week and her funeral was scheduled for 8/15. These events of course left me with little time to pack and move on my spur of the moment decision. Now back to my surgery everything went well and I was discharged on 8/20. When I was discharged I had to stay with my parents so that they could help me with my DD's. My DH and I had seperated that Jan. plus he works offshore so he was not home. On 8/21 I had a party for DD3 since it was her 2nd bday. While I was staying with my parents I really didn't have much with me just enough to get me through the week mostly I stayed in my PJ's and some clothes for doc appt on that friday. I haven't even been to my house to start unpacking. Since the hurricane was coming I decide to just stay the rest of the weekend at with my parents. We always get together when a hurricane comes anyway.

Now back to Aug 28th. We evacuated, my parents, my last surviving great grandmother, my girls, and myself. A normal 6 hr drive took us about 12. We drove to TN and stayed the rest of the night. At day light when we got up we decided to leave since the rest of the storm was heading to TN so we head to MI, but not before dad made his pit stop at the Bass ProShop in Memphis. My younger brother spent his time in boot camp at Ft. Leonardwood so that is where we head. We stayed the night here and the next day we were of to Springfield, dad had to go back to THE MOTHER Bass ProShop. My moms brother had also evacuated here since he had inlaws living in springfield. We met up with my uncle and we stayed at the Hampton Inn for a few nights. We then made our way to north louisiana to me up with my moms sister. They evacuated with there camper and also got on a waiting list for a cabin which after 4 nights we were able to get. I am sorry for going Katrina on you but it was almost a step back in my treatment so I had to share, also so you would understand how I ended up where I did.

In three days calls were made I was off I had an appointment for 9/12 to meet THE TOP/BEST LYMPHOMA DOC that MDAnderson has on staff. I showed up for my appointment with just the packet of my entire copied chart that was intended for my new doc at MH and my original day one CT Scans. This wasn't enough but in the end I was fortunate that MDA was able to get in touch with Ochsner where my previous treatments and docs were. Since my family is the topic of most discussions here at a not so small hospital it was very easy for the family oncologist to get everything going and on to MDA. Thank you God, the thought of having to do another biopsy was very unsettling. I spent the rest of the evening having blood work and xrays done. Since I had a couple of days before my next appointment we went home. Houston is only 6hrs from where I live. This was our first time coming home since the storm and had no idea what to expect. By this time is was just alot of broken trees and blue tarps and the National Gaurd. On 9/16 I was back at MDA for the rest of my test and on 9/17 I returned home to start unpacking my home. On 9/19, I returned to MDA to meet with my new doc to find out what type of game plan we would make. Little did I know that he already made a game plan, I was to be admitted that day for my first round of High Dose Chemo better known as the ESHAPP regimen. By the way since DD's are not allowed to be in MDA my inlaws picked them up & great grandmother was admitted to hospital in north LA she fell and sprained both ankles (she is fine and safely back home). After being admitted on 9/19, had to stay 24hrs for 5days. So I thought but Rita had other plans for me, thats right another hurricane head straight for me, the worst part though was that I was in a strange place by myself. I had to stay an extra 3days in hospital b/c I had no where to go and when the hotel connected to the hospital reopened on the 26th I went there. The next day my parents were able to come and get me but I had to meet with the Bone Marrow Transplant doc first. After my long day of this I was ready to go home I didn't have anything else scheduled till saturday for my follow up. Before I left on tuesday to come home the left side of my face started swelling, the steroids that I had been getting for 5days straight started a growth spurt. By the time I got home the only thing I could do was pour applesauce and pears from baby jars into my mouth because I couldn't open my mouth enough to put a spoon in. By 9am the next morning I had contacted every dentist in the area as well as MDA. The only option I had at that point was to go to the ER. The hospital in my hometown is not really even eligable to be called a bandaid station but all I needed was some antibiotics and pain pills so I went. It was 11:30am the ER was busy but not alot of people waiting. They took my temp and let me lay on an exam table while I waited. I laid there for hours and every person that came in behind me had some type of open wound which bumped me further and further down the list regardless of my presented situation. At 3:45 my mom finally said lets go and we left. She wanted to take me to another ER but I just couldn't stand the thought of that my PCP was about 10mins down the road and I had 5 to get there before closing. My PCP saw me right away, he was the one who utimately found my cancer, my temp had gotten all the way up to 102.5 he wrote me the 2 scripts I needed and I was on my way. That night after I had the meds I need I was doing fine the swelling was going down and the fever was gone.

More to come I have to take a break for a little while.

02-10-2007, 01:39 PM
I am sorry these are so long and I promise I am almost done. I also wanted to mention that during my first round of chemo in 04 I had a port inserted into the middle of my right arm just below my elbow. This took place after my 4th treatment b/c the nurses were no longer able to successfully stick a vein.

The date was Oct. 1, 2005 I arrived at MDA and had my blood work done. When I was finished I my grandma and I (in a wheel chair feeling kind of week) headed off to the follow up appointment. On our way I passed out in front of one of the many clinics in the facility. They immediately braought me to a small room put me in a bed, started an IV, and contacted the clinic that I was headed to for my follow up. Shortly after I was brought to the ER. I was there for a while but not completely sure of the time frame, I was also waiting for an available room. That evening sometime I was finally sent off to a floor that turned out to be ICU. The last thing I remember after that was saying goodnight to my grandma because she had to go back to the hotel and a little while after that being surrounded by nurses and them wraping me in warm blankets. On 10/2 my mom's parents and brother and 2 sisters showed up. According to Aunt L I was fine I yelled at her because she came in crying (she is the crier in the family) and I was complaining b/c I could find out what channel Ellen was on so that I could watch it. Sometime during that night I lost conciousness b/c when they arrived the next morning I was intubated. During this time my testing resulted in Toxic Shock, Sepsis, Viral Pneumona, and a Staph Infection. What a combination right. My brother at this time was currently serving his 12mths in Iraq and had already had his 2wk leave but due to my condition and the state I was in the Red Cross was contacted, and the process began for him to come home. After receiving the okay to come home he missed the flight out that he needed to be on, along with another soldier the military dressed them in civilian Iraqi clothing to put them on a commercial flight home. On 10/10After almost 24hrs he arrived in the states and on that day I woke up with a feeding tube down my nose, breathing tube down my throat, arms straped to the bed, my port was removed, I had a line inserted into my left arm that was not under the skin (how growse), and to top them all off my hair was now dried, brittle, and matted. This was one of the hardest things I have been through I used to doing everything for myself and my girls and when I woke up I had to rely on others. I had to work on feeding myself, getting up and down was the hardest and I couldn't walk on my own. I left the hospital with a walker and a wheel chair and by the end of the month I was up and walking with absolutely no assistance. Since all of this happened I got to have a break for treatments for a month. YAY!!!

02-11-2007, 10:04 PM
WOW. I work in a hospital and we all tend to agree people that should die(as in to sick to substain life) don't sometimes and girl you were one of those people it sounds like to me you are a fighter. glad to hear you up walking around. oh yah by the way I do pet scan.:goodvibes So how are you doing now.

02-15-2007, 05:52 AM
Thank you for sharing your story. I look forward to the rest of your story. I just had a friend diagnosed with lymphoma.