Pulmonary Function Test

Went to the JHU Outpatient Center again today for a pulmonary function test at the Pulmonary Lab. I'm starting to sound like a broken record but I checked in and was in the lab ready to start testing within 10 minutes of walking into the building.

The reason for this test is that Bleomycin, the "B" in ABVD, can cause lung injury. Two tests were administered - Spirometry and Diffusing Capacity. I was greater than 100% of predicted performance on all but two measures on the tests. The important number for me is DLCO/VA and mine is 4.54 ml/mg/mmHg,  which equates to 108.5% of predicted value. Not bad...

Here's a good link for interpreting the the Pulmonary Function Test:

Interpret a PFT

Now we wait for chemotherapy to begin on October 12th.

Chemo Consult

I got my echocardiogram this morning to establish my heart baseline.  This test is needed because Adriamycin, the "A" in my chemotherapy regiment, has a potential side effect of causing heart damage. The test went well and my heart is strong.

Jen and I then went to the chemotherapy consultation and question/answer session with Dr. Seifter. Look at the "Questons and Anwers" page of this blog to see what we asked. We’ve been gathering questions from reading, family and friends. We also met part of the chemotherapy nursing team – Anna Recchio and her son Chris.

10/9/12 - Start Allopurinol (300mg tablet). One tablet per day for 14 days. This is to block the buildup of uric acid, a by product of dying cancer cells.

10/12/12 - Chemotherapy #1 at 9:30am. ABVD intravenous drip. Dacarbazine is the first and takes about an hour. The other three (pushed through by the nurse over the next 60 minutes).

10/25/12 - Chemotherapy #2 at 10:00am.

11/9/12 - Chemotherapy #3 at 10:00am.

11/26/12 - Chemotherapy #4 at 10:30am.

12/7/12 - Chemotherapy #5 at 9:00am.

12/21/12 - Chemotherapy #6 at 9:00am.

The remaining chemotherapy treatments will be scheduled later in 2012.

Report: PET/CT Scan #1

Below is the actual PET/CT report from exam #1. 
_________________________________________

EXAM: PET-CT TUMOR IMAGING SKULL TO THIGH

Date of Exam: 09-24-2012

HISTORY: 48-year-old male, Hodgkin's lymphoma diagnosed in left neck. For initial treatment strategy.

TECHNIQUE: RADIOPHARMACEUTICAL: 8.4 mCi F-18 FDG IV.

This is a combined PET/CT scan. PET is performed from base of skull to mid thigh after a 100-minute uptake phase. CT is performed with oral contrast. No IV contrast was given. Blood sugar level is 110 mg% prior to FDG injection.

FINDINGS: Normal blood pool liver demonstrates maximum SUV 2.1. Anterior mid chest wall soft tissue mass left side of midline measuring 4 x 4.7 cm with intense abnormal uptake with maximum SUV 13.5 involving the soft tissue and adjacent mid sternum, which appears to demonstrate mixed lytic and sclerotic characteristics. Metabolically-active nodes seen in right upper and lower paratracheal, prevascular extending up to right-sided precarinal level with intense abnormal uptake. Some of the larger nodes measuring 3.2 x 2 cm precarinal with maximum SUV 8.7, 2.7 x 2 cm right lower paratracheal with maximum SUV 9.6. There is presence of a few bilateral active axillary nodes, right greater than left in number, size and intensity, largest 2.4 x 2 cm right axilla with maximum SUV 4.7. There is  presence of few bilateral supraclavicular level II, III left neck nodes with active uptake, for example measures

1.3 x 1 cm left posterior supraclavicular region with maximum SUV 4.9 (slice 63) subcentimeter level II with mild uptake with maximum SUV 2.4.

No metabolic abnormality in liver, spleen, or adrenal glands. Small area with moderate uptake with maximum SUV 3.2 In portocaval region for which a 2 x 1-cm node is seen on correlating nonenhanced CT (slice 160). Few left mid abdominal retroperitoneal nodes measuring up to 1.5 cm with, mild uptake with maximum SUV up to 2. There are subcentimeter aortocaval and right retroperitoneal nodes on CT but without metabolic abnormality on PET. Uptake in rest of the skeleton is unremarkable.

IMPRESSION:

1. Uptake in multiple nodes above the diaphragm and the left anterior midline chest wall mass involving soft tissue and sternum consistent with active malignancy.

2. Uptake in a few nodes below the diaphragm are only mild to modest in intensity, additional sites of early metastatic disease cannot be completely excluded.

More Results (Email)

From: Brack

Date: Tuesday, September 25, 2012 10:52 PM

To: Subject: More Results

Family and Friends,

 This is an update from the sucker punch email I sent last Friday morning. Most of all, thanks for the incredible support, good wishes, prayers and a few hilarious stories. Jen, the kids and I truly appreciate everything.

 I had my PET/CT scan yesterday and the results were ready this morning. Dr. Seifter called promptly to tell me that I am a Stage 3A Hodgkin's Lymphoma (mixed cellularity subtype). Not the worst result but could be better. I'm a stage 3 because the cancerous lypmph nodes are located above and below my diaphragm, specifically in my neck, chest and abdomen. The largest mass is 4.7cm x 4cm, well under the 10cm threshold that would make my situation more serious. There is no sign of cancerous activity in my liver, spleen or adrenal glands – a very good thing. Since I don't have any other symptoms and there are no organs involved I am the "A" designation. 

 Jen and I have a consultation with Dr. Seifter on Thursday at 11am, after my echocardiogram. He will explain the full chemotherapy regimen and we will ask lots of questions and decide when to start. It could be as early as next week. The plan is still to use ABVD, a 4-drug regimen, for 12 total doses with a dose every two weeks. So I will be ready for spring to get here and chemo to end successfully. And hopefully I'll have hair before I have to rub suntan lotion on my scalp. The chemo will be administered at Dr. Seifter's practice, a comfortable and spacious facility in Lutherville, MD (Park Medical Associates). We'll get to meet the team on Thursday and prepare for the road ahead.

 I attached a humorous picture for the fashion conscious on this email distribution. On the way out of the house for the PET/CT yesterday I was comfortably dressed in my favorite W&M shorts and a suitably non-matching purple t-shirt. I figured that was the best attire for me to have since I was going to be laying in the scanner for 30-45 minutes. When we got to American Radiology I noticed that, once again, I had left the house in bare feet and forgotten my flip flops. I did have work clothes packed though. I wish I could describe the 30+ amused/disgusted looks I got when I walked into the crowded waiting room in my shorts, t-shirt and black work loafers with no socks. It was truly a sight I can assure you. Jen captured it for posterity for your amusement. Kind of reminded me of the recent Southern Comfort commercial (minus the beach, mustache, glasses and speedo…. And yes my head did fit in the scanner tube with room to spare (not much).

Dressed for Success!

 I plan to keep copious notes as we beat Hodgkin's Lymphoma – we're a family and friend team. I've already found a couple blogs that were incredibly helpful for me to understand the timeline and activities facing me. Even though everyone reacts differently to ABVD and some don't lose their hair (yes Wrigs and Big Murph, bald is beautiful), I'm getting a picture of what the range of possibilities are. 

 I also included my original email below for a few new folks on the distribution.

 Keep the questions, suggestions and funny stories coming.

Love to you all,

PET/CT Scan #1

PET/CT #1 was a fairly straightforward test. Prescribed preparation included no food for 4 hours prior to the test and drink 16oz water before leaving for the appointment. My good friend Eileen, who has had more than her fair share of these scans, advised me to fast overnight and avoid sugary drinks and food - so I took her advice.

We arrived at American Radiology on time. Unfortunately there is a full house this Monday morning so this will not be a quick appointment. After 30 minutes the PET/CT tech led us back. First order of business is to "void the bladder". This was followed by drinking a 16oz (?) pina colada flavored barium mixture to coat my insides. A few minutes later  there is a 5 minute IV to inject the nuclear material (8.4 mCi F-18 FDG). Here's a quick description for those interested:

   FDG Basics

I then sat in a back room in a large recliner with a blanket to keep the body from working to stay warm. The intent is to relax with little to no movement. The goal is for the the overactive cancer cells to consume the radioactive glucose as much as possible.

Still Dressed for Success!

The previous scan ran a little long so after an hour the tech checked in and had me drink another 8oz of barium pina colada cocktail. After a total relaxation period of around 75 minutes, I was ready to go. This GE PET/CT a sizable imager. I laid flat on the imaging table/bed, which is initially located completely outside of the imaging tube, with my arms above my head. First the CT scan is run as a calibration cycle of sorts. The CT imaging ring is at the front of the tube and imaging occurs as the bed moves into the tube. The whole CT imaging process takes a few minutes. Then the PET scan starts. The PET imaging ring is at the back of the tube so the bed moves farther into the tube. My head is out of the tube for most of the PET scan as it scans from head to mid-thigh. There are a number of imaging cycles (I lost count) and each takes a around 5 minutes as the bed moves slowly through the tube. The only movement allowed is breathing and blinking your eyes. I almost fell asleep because it was a calming experience for me. Other than being subjected to the fluorine-18 radioisotope, X-rays and Gamma radiation, the only discomfort is a sore shoulder from having my hands above my head.

From walking in the front door to leaving the facility the total time was just under three hours. I expect the next one to take closer to two hours.

Excisional Biopsy Report

THE JOHNS HOPKINS HOSPITAL

SURGICAL PATHOLOGY

401 N. Broadway  

Baltimore, Md 21231-2410    

JHH MR #

Accessioned 09/13/2012

Birthdate:  

Loc: ORHLO

Gender: M            

Spec. Taken 09/13/2012

JHH Physician: WAYNE MARTIN KOCH, M.D.

==================================================================

INTERPRETATION AND DIAGNOSIS:  (mxv)   09/20/2012 @ 01:54 pm

LEFT NECK MASS (EXCISION): CLASSICAL HODGKIN LYMPHOMA, MIXED

CELLULARITY TYPE.  SEE NOTE.

NOTE:  The specimen contains sections of lymph node.  The

architecture is effaced by a diffuse inflammatory infiltrate

containing prominent clusters of epithelioid histiocytes and

lymphocytes.  There are scattered Reed-Sternberg and variant cells as

well as mummified cells present within the lymph node.

A panel of immunostains performed at JHH (CD20, CD3, CD30, CD15, and

Pax-5) and in situ hybridization for EBV (EBER) was reviewed.  The

background lymphocytes contain a mixture of CD20 positive B-cells and

CD3-positive T-cells, with T-lymphocytes predominating.  The

Reed-Sternberg and Hodgkin cells show a strong membrane staining for

CD30 and CD15, and a weak nuclear staining for Pax-5.   An in situ

hybridization for EBV-encoded RNA (EBER) is negative.

The findings are consistent with classical Hodgkin lymphoma, mixed

cellularity type.

*Electronic signature (09/20/2012 @ 01:54 pm) by which I attest that

the above diagnosis is based upon my personal examination of the

slides (and / or other material indicated in the diagnosis), and

that I have reviewed and approved this report.

Some stains/tests used in arriving at the diagnosis were performed

here using reagents that have not been cleared or approved by the

US Food and Drug Administration.  These were developed and their

performance characteristics determined by the Johns Hopkins Medical

Laboratories.  Their use does not require FDA approval.

==================================================================

GROSS DESCRIPTION

PART #1: LEFT NECK LYMPH NODE  (fas)

Resident Pathologist:   09/13/2012

Dictated by

The specimen is received fresh, labeled Lastname, Firstname and is

designated as left neck lymph node.  The specimen consists of one

piece of pale tan soft tissue, measuring 2.1 x 1.1 x 1.1 cm.  The

specimen is bisected and submitted in its entirety.

SUMMARY OF SECTIONS:

1 - A - 2

1 - TOTAL - 2

==================================================================

Sucker Punch (Email)

From: Brack

Date: September 21, 2012 12:38:02 PM EDT

To: 

Subject: The Results Are In...

Family and Friends,

Apologies for the mass email and I truly apologize for those who are caught off guard. Up till now it wasn't worth broadcasting that I was having a pesky lymph node checked out.

And as you know me...I'm a bottom line up front guy. A couple hours ago I was diagnosed with Hodgkin's Lymphoma (HL), the one and only. The pathology results that were made available last night from lymph node biopsy from last week showed "the clear presence of multinucleated Reed-Sternberg cells" so this leaves no doubt of the HL diagnosis... <now you can all exhale>

The good news is the diagnosis was not an incurable non-Hodgkin's Lymphoma. The better news is that HL is one of the most curable (as in it won't come back) forms of cancer with 95% cure rate for Stage 1 to something like 75% for Stage 4. HL is well researched and well understood with a known, effective treatment regimen. As some of you know the next step for me is staging. My go-to guy is Dr. Eric Seifter who is already off and running to schedule the next batch of tests that are:

1.     PET/CT scan to determine the staging. Has it spread? Where has it spread to? Probably won't get this test until at least next week because Dr. Seifter has to order nuclear material that I need to drink as part of the imaging procedure.

2.     Pulmonary function test (breathing test). We need to get a baseline of the lung function.

3.     Echo cardiogram

The primary treatment regimen for HL is chemotherapy with ABVD, a 4-drug regimen (a cocktail, so to speak). The initial thought is 12 total doses with a dose every two weeks. The bad news for some of you is it will likely cause me to lose my hair and you will be exposed to the dull corners, knots, scars and bumps that are my skull.

I'm convinced that my string very good luck is far from over. This will be another task/chore/undertaking that I will succeed in completing. As many who have already been in this position would say, I'm going to do my best to keep life as routine as it currently is. An upside is I might also finally lose that pesky 40 pounds I picked up since college. And I will truly appreciate all of the humor you have to bring my way. I've been called many unprintable names and described in many unflattering ways...by my best friends. I expect that to continue.

Love to you all

The Call

I was siting at my desk and expecting the call from Dr. Seifter. Dr. Wayne Koch had called home last night but we missed the call. When I called Dr. Koch's office I found out he was out for the day. So I asked his office manager Katie to forward the results to Dr. Seifter. Within a half hour Dr. Seifter called me.

It was a very matter-of-fact call, the conversation lasted maybe 5 minutes. I tried to scribble notes, forgetting that I would get a copy of the complete diagnosis in my email InBox within the hour. He mentioned "Classic type" and there was no sign of Epstein-Barr. I asked about what kind of good news I could give my family and friends. He talked about HL being one of the most curable forms of cancer with cure rates as high as 95% range (lower stages being better). He mentioned the preferred treatment regiment called ABVD. What I appreciate the most is that Dr. Seifter had a plan and laid it out for me. We need to stage HL and then determine the exact treatment regimen. Most likely I was looking at chemotherapy with ABVD. But first, time for more tests. First a PET/CT  then an echocardiogram (heart baseline), and a pulmonary baseline. I remember laughing when he asked about my schedule - as if anything would get in the way of me getting HL out of my body. My response was something along the lines of "You schedule it and I’ll be there." He told me to expect a call within a few hours with the schedule for the tests.

After I hung up, I sat there thinking about what had just occurred. Time to call my wife, parents, brother and sister.

Jen was at her desk. She knew why I was calling. She listened patiently and was remarkably calm as I told her what I knew. Like me, she had so many more questions than answers. We talked for about 5 minutes, no tears, just some facts and an outline of a forward plan. I know now that when we hung up she called our friend Lisa and they both shed some tears, which was good for her.

I called my mom's cell phone. I knew she was in Paris with dad and expecting that I would call either today or tomorrow. She was walking in the rain when we talked. I choked up a little bit as I explained the diagnosis but her stoicism pulled me through. I was amazed at our conversation given this was the second time in her life she was being told that her son had cancer. She listened so well and then asked direct and simple questions. I would call back later when she could put me on speakerphone with dad knowing that she wouldn't be able to answer all his questions. During our conversation my mind went back to where I was when she and dad called me to tell me Little Pete (my "big" brother) had squamous-cell carcinoma on his tonsil. I was driving home on the Washington beltway just past River Road. Later that day I couldn't recall the rest of that trip home. And like my big bro, I look forward to being a cancer survivor. I just hope he and I are taking the only two for the team - enough already!

And just like that Lisa showed up at my office 15 minutes after I talked to Jen. She gave me a hug, and then got down to the business of helping me make sense of what was coming next. Just as soon as Lisa left her husband John called. "That just sucks" he said, and I couldn't agree more. I truly appreciated that he just said what was on his mind. This is just the initial show of support from an incredible network of family and friends that is always there for us.

Time to send an email to family and friends with more detail. It wasn't lost on me that it was Friday and most of the recipients of the email had no idea what was coming. I'd be lying if I said I didn't cry. I just sat there trying to compose an email that was eventually titled "The results Are In..." (See the "Sucker Punch" blog entry). The first half dozen times I tried to type the words "A couple hours ago I was diagnosed with Hodgkin's Lymphoma (HL)" I had to stop, take a deep breath, wipe away some tears, and try to gather my thoughts. With my door closed, I started an outline for the email.

I had an 11am meeting in my office so I had to gather my thoughts and momentarily set aside the diagnosis in order to conduct the 40-minute meeting. It was a good diversion, talking about opportunities for one of my team to enhance their image and increase their exposure to executive level management.

With my meeting complete, I finished my first email during lunch and sent it off.

It was time to get more answers and develop the detailed plan as I waited for Dr. Seifter's next call. And true to form, he called around 2pm with the schedule for next week. PET/CT on Monday, echocardiogram on Thursday, and pulmonary baseline on Friday.

Time to get busy getting rid of HL.

Patient # 836

This afternoon I had the excisional biopsy surgery. After the consultation with Dr. Koch yesterday I was comfortable that this would be a routine, quick procedure. And it was just that.

Jen and I arrived right on time and checked in. We were seated in the outer waiting room for a minute at most when a member of the surgery center staff asked me to finish my registration in preparation for heading back to a second waiting area. At the same time, another staff member sat down with Jen to explain how the day was going to progress for her and what she should expect. After another 5 minutes we were both seated in a second waiting room after which we were taken to my pre-op room. From arrival at the surgery center to sitting in my pre-op bed took 15 minutes.

The pre-op routine then started. Change into a gown including compression socks, start an IV, and meet the surgery team.The JHU Surgery Center was bustling today and it would take another two hours before an operating room was available, so we settled in.

The A-Team included:

• Dr. Wayne Koch, Director of the JHU Head and Neck Center
• Dr. Sofia Lyford-Pike, chief resident (UM Terp and JHU Medical School)
• Dr. Adam Sapirstein, Anesthesiologist
• Dr. Clark (visiting from the UK)
• Jacob (Jake or Kupe?) Kuperstock, a local guy and current Stanford Medical student, and W&M '09 grad (BS Chemistry, Phi Beta Kappa, and a member of the baseball team until he broke his hand) - I like this guy!
• Martha Nakamura, Anesthesia/CRNA

Jen and I had an extended conversation with Dr. Lyford-Pike, who upon hearing where I went to school, promptly brought Jake Kuperstock in to talk with a fellow alum. He's finishing up at Stanford Medical School and now applying to hospitals for his residency. This is a good team!

Around 2:30pm the nurse/anesthesiologist started my drip. I asked for a light dose and wanted to be awake for the procedure. And around 3pm I was wheeled in to the operating room. Dr. Koch led the procedure and was as cool as the underside of a down pillow. A little humor here and there, some discusson of pro football and just like that we were done. in about 30 minutes. I got a look at the offending lymph node once it was removed and it didn’t look like much – a small (1-inch long) pinkish/red fleshy mass. After a couple more hours of post-op recovery we were on our way. the incision was closed with surgical glue and it looks like it's not going to leave much of a scar at all.

The only hiccup during the entire day was the traffic. This was due to the Orioles businessmen's special  game against the Rays that started at 12:30pm and ended around 5:30pm - as we were driving into town and leaving.

The day went so smoothly that I made it to my department picnic in time for a Friday night beer - after getting the OK from the doctor.

Patient # 48

Today was the surgery consultation with Dr. Wayne Koch, Director of the JHU Division of Head and Neck Surgery. It was a 30-minute pre-op consultation at the JHU Outpatient Center. Check-in was automated and efficient - as I am getting used to. One thing you notice right away are the small posters showing the US News hospital rankings that place the JHU Head and Neck surgery Center at #1. That's a good start!

I arrived early and was shown to an exam room almost immediately, before my scheduled appointment time.  Dr. Geoff Young, on a one-year fellowship / clinical experience, arrived shortly thereafter.  He went through my history, asked several questions, and examined the lymph nodes. I asked about his backround and education - he's a PhD and MD (Duke undergrad, UAB, and Robert Wood Johnson Medical School). He then left the room, presumably to consult with Dr. Koch.

Dr. Wayne Koch came in with Dr. Young promptly at 1pm. He also performed an examination of candidate lymph node. He explained why the supraclavical is less optimal due to its proximity to a nerve that runs into the shoulder.  The enlarged cervical lymph node was the best candidate given that is on top of the muscle. Dr Koch also explained his preference for performing the procedure at the surgery center in the Weinberg Building as opposed to the Outpatient Center building. Dr. Koch put me at ease immediately, which was reassuring  given my previous experience. He is the consummate professional who looks you in the eye when he speaks. Terminology and procedures were explained in terms I understood and he is well spoken with attention to detail.

At the end of our appotinment he was going to have Dr. Young work with me to get the surgery scheduled. When I told him that we were on for tomorrow he remarked that it was good that the system was working smoothly. I told him that Katie Gresdo, his medical office coordinator, was phenomenal at getting things scheduled so quickly.

I left the appointment with the full confidence that the surgery was going to be a complete success.

Scheduled: Excisional Biopsy

Katie Gresdo, Dr. Koch's Medical Office Coordinator, called promptly this morning. Dr. Koch was out of the office for the Labor Day weekend and she had contacted him to get approval to move forward. She scheduled me for the first available appointment on Sept. 12, followed by surgery the next day. Katie is as polite, professional and efficient as anyone I've met. She followed up with an email that included required paperwork and also emailed me a confirmation as well as directions to the JHU Outpatient Center. It was so reassuring to have these appointment setup in a short amount of time without having do much. It's amazing, when dealing with this whole new aspect to my life, how some people can make an immediate difference. Katie is one of these people.