Howdy! New to the Forum: Primary Mediastinal Large B-Cell Lymphoma

Howdy!

Names Matt and live in Los Angeles. New to the forum and was directed here by a fellow patient at my Cancer Center (Northridge Hospital/UCLA Research in L.A.).  I was diagnosed with Diffuse Large B-Cell Lymphoma with a Non-Germinal Center Cell Phenotype (B-DL-CL-NC) (I just copied and pasted), on July 10th this year and had my first EPOCH-R August 4th.  Today I am on the 3rd round Day 3 and doing pretty damn good.

My story is somewhat unique, but don't we all have that?  My father was diagnosed with Hodgkin’s (I don’t know what staging or variation) in 1979 at the age of 28.  He received massive radiation, spleenectomy, 3/4 of his left lung removed and other procedures.  He lived a productive, albeit somewhat difficult life related to his health, until 2009.  Yes it was a barbaric therapy by today's standards, but he survived 30 years!  

Fast forward to 2011 and my 28 year old brother.... diagnosis of classic Hodgkin’s Stage 2A.  Needless to say this was pretty devastating to the family that my brother was diagnosed with Hodgkin’s at the same age as my father. Obviously my mother was reliving some awful times, but we knew that my father survived and this ISN'T 1979!!!  He had broken a tooth, which needed to be extracted.  3 days after the extraction, his neck became swollen.  Made sense that an abscess formed and he had a regiment of antibiotics.  That did nothing and he then did 10 days of levoquin, which did nothing.  Then he went to an ENT and they knew instantly it was Hodgkin’s and ordered a CT Needle Biopsy, which revealed Hodgkin’s.  We did our research and found that Northridge Hospital affiliated with UCLA had a doctor that focused research in lymphoma and made the appt. He received 12 rounds of ABVD, no radiation and is doing great.  October 23rd is his next scan at the 3-year mark from the last treatment.  We aren't crossing fingers, reading numbers, or calling Miss Cleo...we know he is doing great!

Still reading?? 

This year was my turn... Around January I noticed that I was getting sluggish, maybe a little winded and a slight cough.  I'm a teacher and found all sorts of very convenient excuses to diagnose these little nuisances.  I had a bout of bronchitis in March, and had a round of zpack that cleared it up.  It cleared up but I had a little hack that lingered till June and I was gaining weight. Hey, sometimes it takes a long time to clear the chest and I'm constantly exposed to germs from the students.  In April I went to Las Vegas and I just couldn't keep up with my normal pace and just figured.... hey I'm older now than I used to be.... eh no big deal.

Fast forward to the last day of school on June 6th this year and I was going to celebrate the end of the year with my brother (who teaches at the same school I do) and I just felt **** (the only word I can think of to describe this).  I had zero energy, coughing, and low-grade 99.5 fever.  This year I had to clean my class completely because I was promoted to become a coordinator at my school and in this process I was breathing in all sorts of crazy old dust, breathing in all the old paint and stirring up every germ/virus that's been hiding out for 50+ years.  I’m used to this…I always get colds and infections working with the kiddies.  This time was different because I developed really really awful night sweats.  I knew this **** and immediately my mind started going nuts.  Hodgkin’s, HIV, Cancer, Cancer, Bueller??

After a couple of days in denial I went to urgent care and told the doctor about my symptoms and my concerns for lymphoma.  He felt me up and down and high and low and no swollen nodes.  “Go home.  Rest.  Drink plenty of fluids, Tylenol, maybe an extra root vegetable.”  I was a little disturbed because I felt this wasn’t just a virus, but hey whatever I made an appt to see my internist later in the week. 

2 days before I was to see my doctor I was awoken by crushing pain in my left chest.  “"This is The Big One, Elizabeth!”  Ran myself to the ER and they did an EKG, normal.  Chest Xray… before the Doc came to talk to me the X-Ray tech says “There is definitely something in your chest.”  Doctor came to talk to me and said I had pneumonia and I should use an inhaler and 10 days of Levoquin 750mg and to follow up with my doctor in 2 days.  I accepted the diagnosis, but I had zero congestion, no phlegm and had a 99 O2.  Hmm.  I asked the ER doctor and he said its possible it needed to break up.  Ok…

Went to my doctor and the pain was gone and he gave me an order for another chest x-ray in 2 weeks to see if it was clearing.  Went home and started feeling somewhat better, but not great and figured pneumonia takes a while to heal.  Guess what came back… the same crushing chest pain.  My doctor ordered a next day CT scan and told me to go back to the ER if it got worse.  Had the CT scan the next day and they recommended a CT needle biopsy due to possible lung cancer or lymphoma.  Had the CT biopsy the next week on July 3^rd.  Due to 4^th the pathology didn’t come back for a week and the diagnosis was good.  Not lung cancer, PMLBL.

I have an HMO and was worried about where I was going to get services and a weight was lifted when I was told to go see my brother’s doctor!  I knew I’d be in good hands and that’s probably just as powerful as the hospital lasagna. When we went to the hospital for my appt, everyone knew my brother and myself by association.  It was a weird ‘homecoming’ but it was better than going into this knowing nothing.  When I met with the doc he gave me the diagnosis and gave me a dissertation about how the hospital and UCLA worked with NCI to do the EPOCH-R treatments and its cure rates.  The other great news… Home infusion. 

My boss’ husband had PMLBL 2 years before myself.  Relatively the same age, mid-30s, and he was in the hospital for infusion for 5-6 days every cycle.  When I heard I could be doing home infusion I felt like I could totally do this.  Needless to say when I went to talk to the boss, I knew she would understand and probably freak out.  Both were the case, and she has been nothing but supportive to my family and me.  More good news.

I was scheduled the PET scan, Port, and Bone Marrow Biopsy all within two weeks before treatment.  The PET scan didn’t bother me at all.  The port I remember my brother had some issues, but it wasn’t the worst.  The doctor that did the port introduced herself by saying “Hi, I’m Dr. XYZ and I want you to know that I’ve had this procedure done to me 3 times now.”  Talk about the right thing to say.  Had discomfort for a few days.  The real killer for me was the bone marrow biopsy.  I remember my dad talking about how awful it was, and my brother.  Years of hearing the ‘battle tales’ and facing it head on was clouding my sanity, but hearing the results that the cancer was not in my bone marrow was worth it.

I was staged at 2 with one risk factor.  Pretty good I was told and I knew I was doing better than my brother before he started treatments.  Seeing the port needle was meh, but really it wasn’t bad for me.  Relief.  My first round started with the Rituxan on the slow infusion from roughly 8:30-1:30.  I did pretty well.  Got a little cold, but realized I needed to move from under the AC vent.  Once the Rituxan was finished I had a few flushes, anti-nausea, and other bags before I got connected to my 4 AA Duracell-Pro pump buddy for the M-F slow dose of kool aid.  It was difficult getting used to walking around with this plastic lock box of poison in a Trader Joe’s cooler bag, but I was getting used to it in my house with my doggies.  I have to go to the center Tue-Thu to have the chemo pump refilled and then on Friday I get off the machine and Cytoxan.

My first side effects were just feeling weak.  No real nausea.  I felt weird, slight neuropathy, and just not myself.  As the week went on the same feelings persisted and the real culprit was constipation.  I had to change my diet to almost fruits, prunes, cardboard bread, prunes, and prunes.  The prednisone does wonders for my stomach, but a few tums do the trick.  On the last day of infusion with the pump I go in for the Cytoxan infusion. The first one I had some anxiety about it and passed out in the chair.  I didn’t feel sick I was just completely overwhelmed.  They did a blood count and the results came back in bold “QUACK”.  Everything was normal; I just had a mental moment.  Once deemed ok I had the infusion, which was fine for me.  No real problems.  That Sunday morning I had the Neulasta shot and was off for 2 weeks.  It took about a week for me to feel slightly back to normal.  By Thursday of the 2^nd week off, I felt better than I had in months.  When I went for Round 2 of chemo, I told the doctor I literally hadn’t felt this good in a long time.  He said that was an excellent sign.

Round 2 went off 100 times better than round one.  I was getting used to maneuvering with the pump and literally felt better on chemo, than before.  I kept thinking how is this even possible?  After my Neulasta injection I was feeling great 4 days off the treatment.  I was driving again, sparingly going to a restaurant I trust, market.

 

Had a PET scan right before I started round 3 this past Friday.  I just got the results yesterday (short n sweet):  Current SUC is 3.5, previously 45, mass currently measuring 4.2 by 7.4cm and previously 7.9 x 9.0cm.  Previously focal areas of intensely increased metabolic activity in the lymph nodes are no longer present.  My doctor’s partner gave me the results yesterday and he will talk to me today about it.  All good news at round 2.

 

I think this is enough for now.  I’m thankful for everything that has happened and have not much to bring me down at this point.  I’ve written this in my house, on the pump, listening to podcasts.  Amazing how things have changed from when my dad has cancer.

 

Feel free to ask me anything and I’ll try to be as active as I can.  Thanks

 

Matt