Chemo Treatment #2

Mom and dad came along for the trip today. We arrived early since traffic mostly cooperated so they got to take in the facility and surroundings, and talk about what to expect. It turns out that mom once showed one of her sculptures in an art opening in the outdoor courtyard of the medical facility several years ago.

Our first order of business was the 10am consultation and examination with Dr. Seifter before starting the chemo treatment. This meeting will occur each time I go for treatment. All three of us met with Dr. Seifter and reviewed my latest CBC and then asked questions. My white blood cell count (WBC) is right where it needs to be at 2.4 (x 10³ /µL), so dose #2 (including nausea meds, a steroid, and the ABVD chemo components) will be the same amounts as dose #1. This WBC also validated that the initial prescription amounts were spot on. And that was a good sign given the unusually large volume of chemo (for Dr. Seifter's patients) that was initially prescribed based on my body surface area. Other than WBC, another thing to watch will be HCL (hematocrit) that shouldn't get below 30. RBC most likely won't go down until later in the treatment cycles.

The examination was routine and my BP was steady at 120/80 again. Some additional good news is Dr. Seifter found that the left supraclavicular lymph node is smaller than previously noted and hard to find. And there was no other sign of the few swollen lymph nodes where they once were. We followed up with a few more questions, admiration of Dr. Seifter's fossils, and a quick exchange on a Vinctifer Comptoni fossil that mom and dad have. Also, the odds are I will start to lose my hair right by mid next week. How ironically apropos that the jughead may be in full view in time for Halloween! Lauren also scheduled my next pulmonary function test (PFT) at the JHU Outpatient Center on 07-Nov. Lastly, the group that provides the chemo for me is Pharamquip, part of the Johns Hopkins Home Care Group (not any sketchy compounding labs in the Northeast thankfully)

Dr. Seifter handed me the chemo therapy prescription for the day and we walked down to the chemo treatment facility. Activity today was more bustling than the previous times I remember. My impression remains that, other than an occasional pleasantry and polite attitudes, the chemo patients in Dr. Seifter's facility either sleep or keep to themselves for the most part. Other than talking with Anna, Dawn or Paulette on occasion, it's pretty low key. 

Mom and Dad Along for a field Trip

Unfortunately, when these Brackens are present, low key is rarely the modus operandi. Either mom and dad initially traded off sitting with me while the other sitting on a couch just outside in the hall. Eventually both were in the room for the final couple hours. So we were having one of our usual, low volume conversations that could still wake a person through their headphones. And one patient today, Murray, looked to be in a deep sleep with his headphones on. When he awoke he joined our conversation and we meandered all over the place from fishing, organizational behavior, our diagnoses and treatments, photography, and other topics. It was quite a pleasant an enlightening hour-long (or so) exchange. I was again reminded that I have won the cancer lottery with HL. Murray, a lawyer turned photographer following his passion, is currently on maintenance treatments (every couple months) for Non Hodgkin's Mantel Cell Lymphoma. One of his possible options down the road is a more exotic approach requiring stem cells. He looked great and had an even better attitude. I emailed him the link to this blog and he replied a little later to me on email. It was one of those times where you are left with a smile after an unplanned encounter because the finer side of humanity is ever present, just sometimes hidden from view until it's uncovered.

Dawn was my angel today and Paulette assisted as she tended to others as well. The routine was the same as treatment #1. However, this time we slowed the final drip (Dacarbazine) to avoid any discomfort. It worked even though it took a bit longer. In between work emails and enlightening conversations, I texted Eileen, our dear family friend and my guiding light through much of this. She was getting a chemo treatment at the same time as me at her doctor's facility across town. My treatment ended just past 1:30pm and off we were to lunch.

We were the last to be seated to Petit Louis for lunch just before 2pm. We had a phenomenal lunch of mussels, French onion soup, butternut squash soup, scallops, duck, with a side of mushrooms. The 2010 Alphonse Mellot Sancerre La Moussiere was the perfect accompaniment (along with two bottles of water primarily for me). I had an Alsatian apple tart and mom and dad had the pot-au-creme, a dark chocolate ganache-like custard that was rich and silky.

All in all another very good day. I was tired early in this evening, most likely due to needing more sleep last night. And I am now very thirsty like usual. Eileen recommended adding lemo to my electrolyte water because it is an alkalizing fruit - great idea!

Off to sleep, in spite of my steroid infusion.

Round 1 Goes to MB

I'm declaring Round 1 a victory for me. I am ahead on all cards and am really happy that I did not have anything more than a few minor effects like a lack of energy around day 3 and 4 and some early acid reflux. That was on me since I shouldn't have eaten that bowl of pasta with the tasty red sauce I made for Alison's dinner on the first night of Round 1. I started over-the-counter Prilosec on day 2 and will finish that 14-day plan this week. I'm also paying more attention to acid and alkaline forming foods to try to find a better daily balance. 

To track my progress I created a chemo-adjusted scoring system to assess how I feel each day. Yes, the engineer in me has created a spreadsheet to track my scores. It's a work in progress that I will tweak over the next few weeks. It includes sleep, appetite, energy level, exercise, how my internal systems are working, nausea, vomiting, and increased temperature level. All factors receive equal weight at this point and the ere is some subjectivity to my final score for the day. I"m also tracking my daily temperature and weight. My average temperature for the for Round 1 has been 97.7°F and my weight is down 4 pounds, which is insignificant for me.

Daily Scores for Round 1

I also had my first complete blood count today. Anna drew my blood at the chemo facility and I had my CBC in 5 minutes. The level of professional service I continue to receive is still beyond my expectations and I love it.

My white blood cell count (WBC) is down noticeably as expected. And so are my white blood cell type counts (granulocytes and lymphocytes). So I am now more prone to infection and will try to avoid those visibly sick people around me. My red blood cell count is not not down from my last CBC, hence the reason why I have more energy now. My mean platelet volume shows up as low but it's about where it was at the last CBC.  I have not spoke to Dr. Seifter about the CBC results yet and whether there will be any changes to the levels of ABVD as a result. I hope to see him on Thursday for a quick consult. 

CBC on October 23, 2012

Round 2 Starts at 10am on Thursday, 25-Oct. Mom and Dad are going to tag along for the fun. We have reservations for a late lunch at Petit Louis Bistro, I'm going to enjoy a good meal while I can.

Chemo Treatment #1 (+ 3 Days)

While I'm not sitting around waiting for the less pleasant side effects of ABVD to kick in, I'm feeling pretty lucky so far. It's been more than three days since my first treatment and I'm feeling remarkably good. My appetite is fine although some foods do taste slightly different now. And I'm sleeping well enough to be rested in the morning although I there was a couple times today where I felt a little tired. So I'm keeping to a normal routine as best as possible. Tomorrow is another day and every treatment may be different so I'll take the good times while they last.  And Rick (a friend of my Aunt Kirk's) was absolutely correct when he said one of the most important things to know is where the nearest restroom is. I'm drinking plenty of water and the occasional Gatorade and this is requiring much more frequent trips to the WC.

Chemo Treatment #1

[TMI Warning!]

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There is info below that may be considered “too much information” for some. I include it because it’s been helpful to me to know the range of ABVD effects/side effects even though not all (hopefully) will impact me.

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Jen, David and Alison accompanied me to the appointment; they wanted to see for themselves what my days are going to be like every two weeks. We were on time and checked in with Lauren Wirth. She is Dr. Seifter’s Patient Service Coordinator, and the first person I really spoke to when I was getting down to the business of getting well. She could have easily said, "he’s not taking new patients", or no you don’t have a referral, or some other polite brush-off that I have heard before. But she took my call, listened to my plea (short story), and had Dr. Seifter call me back. And I’m grateful for her decision because here we are about 6 weeks later and doing well.

We met Dr. Seifter promptly at 9:30 for a quick checkout. My temperature was below 97° and my blood pressure was 120/80 – I’d like to think this means I was cool and calm heading into my first treatment.  I’ve been taking my temperature for a few weeks now, first thing in the morning, and it averages 97.6°. At the time of starting this blog entry I am up to 98.5° but it’s back to normal now. No worries.

Here’s Dr. Seifter (nice tie!) and me...the time stamp is off by an hour (now fixed):

Dr. Seifter and me

Even though I make him look average in height (like I do most people), he is larger than life for me! We had a chance to ask some additional questions in Dr. Seifter’s office and here are the answers:

1. Anti nausea meds will be given intravenously and will last up to 3 days.
2. I need to continue with allopurinol (keep Uric acid from building up) until 18-Oct.
3. Dosing is based on Body Surface Area, a known calculation. MY BSA IS 2.62 m². Here’s an example of how to calculate this based on one model/equation (DuBois): 

Body Surface Area Calculator

And voila, here is my record-setting dose (that is based on a relatively small population of 80+ patients):

Adriamycin “A”: 65mg 

Bleomycin “B”: 26mg  

Vinblastine “V”: 16mg 

Dacarbazine “D”: 980mg

We then walked down to the chemotherapy room and met Anna Ricchio and Dawn Guttman, the oncology/chemo nursing staff, or “angels” as Dr. Seifter calls them. And they truly are. Each are as accommodating and loving as anyone you will meet. They take time to explain everything and make great conversation as well. They have further extended the group excellent professionals who have guided me quickly and smartly in my search for knowledge about my enlarged lymph node and subsequent diagnosis. And as I now know, this chemo room (5 chairs, 4 rotating staff) is for Dr. Seifter’s patients. I settled into my recliner chair joined a couple others who were already into their respective treatments. One humorous note...the lab that makes the chemo prescription called Anna and Dawn to verify that the doses they ordered were correct. My height and weight were reiterated, and after some quick calculations, the doses were confirmed.

Angels

We got started at 9:55. The vein of choice is on the topside of my left wrist, just above the hand and ulna “knot”. First is a liter bag (I’ll go through two total today) of standard saline solution - sodium chloride (NaCl). Then the anti-nausea medications drips were started. First was Emend and then Aloxi. Each were hung as small IV bags, and only after the previous bag was drained. Next was Decadron, a steroid (glucocorticosteroid) was started. It assist with the possible affects of the chemo. This may make for a sleepless night tonight. Here’s some good info on Decadron:

Decadron Info

 After an hour, it was time for the chemo. In a slight change from a prior discussion we are going to start with the three that are “pushed” into the IV.  Here’s the brief timeline.

11am: Start with A. It’s a red liquid, looks like commercial hummingbird food, was pushed into the IV via a medium syringe. From the dose levels above, it’s the largest dose of the three being pushed. Dawn sat next to me and gently squeezed the syringe for about 10 minutes until that dose was complete. I ate ice chips, which seem to help reduce mouth sores from A by reducing blood flow in the mouth while it’s being administered.

11:10: B is next and is a clear liquid. Dawn pushed it in via syringe just as she did A.

11:20: V is the last to be pushed. I felt a slight but noticeable tingling as it was pushed in.

11:30: Time to start the IV drip for D. It’s a much larger dose and is metered in through an IV pump. There was a little burn on this one as it started. And the burn went in waves. I told Anna and Dawn and it was easily remedied by slowing the drip rate on the pump to closer to 90 minutes. It was much less and I got used to it and there was no real discomfort. Midway through I had to use the bathroom. Fortunately it’s a 10’ walk since the restroom is in the chemo room. And it’s the first time I’ve ever seen pinkish or copper colored urine. Thankfully the bathroom is part Proximity to restrooms will be important since I’ll take in two liters of IV fluid and all the drugs. I’ll am going often today - up to 6 times so far.

12:45: The IV is extracted and we’re done. As a final order of business we review a long list of effects, side effects and warning signs watch for:

Chemo Effects Cheat Sheet    

With hugs from Anna and Dawn for all of us, we're off to lunch. On the way out of the office, Lauren was able to move up my last two appointments in 2012. They are now on 12/7/12 and 12/21/12, both at 9am.

As the day progresses my stomach is grumbling occasionally. I’m not sure if I’m hungry or not wanting to eat - so I eat. I’m sure it doesn’t help that the Orioles just lost to the Yankees. 8 hours after the chemo IV was extracted, I’m feeling fine. I’m a little stuffy and have some slight stomach acid brewing. A 12 hour Sudafed and a couple Tums seem to do the trick.

It was good for Jen, David and Alison to see the process and take the mystery out of where I’ll be going for the next 6 months. Thank you to all who emailed, texted or called today. I was on my iPad or phone throughout the chemo session today enjoying the good wishes, prayers and banter.

Love to you all