Monthly Archives: February 2014

Insurance companies and PENN trials

My head is spinning and my eyes are crossed.

I’ve spent a good part of my day on the phone and computer.  It began with a bill I received yesterday from my last PET scan.  It seems that my co-pay for radiology had doubled.  I attempted to check my insurance company’s website this morning but it had a system error and told me to call Member Services.  Then I called the number and it suggested I check the website.  It was a frustrating start.

After 45 minutes on the phone, I was finally put through to a human being who could assist me. It turns out that my newest plan does in fact have the higher co-pay.   The ins. company is also mailing me an updated list of covered services and their co-pays.

I then called the Clinical Trial Information Center at UPENN to see if the trial I was hoping to get into had reopened.  It has!!  (I won’t bitch too much about how this person was supposed to call me AS SOON AS it reopened.  Nope, not gonna bitch.  It’s just another reminder to be my own advocate)  I was given more information and told to call the Study Coordinator whom I got through to on my first phone call.  Here’s what I learned today:

– the official full name of the trial is: Dose Optimization Trial of Autologous T Cells Engineered to Express Anti-CD19 Chimeric Antigen Receptor (CART-19) in Patients with Relapsed or Refractory CD19+ Chronic Lymphocytic Leukemia (CLL)

– the short title is: CD19 Redirected Autologous T Cells

– in short, my understanding is that they will extract T Cells from my blood, send it to an outside company to perform magic and make it what I need it to be, and then infuse it back into me.

– even though I’m currently in treatment, the chemo drug is neutral enough that I still may be eligible this

– people from across the country are coming to UPENN for this trial

– the fact that I live close to the hospital may be an advantage for me

– after my doctor’s office sends UPENN my records, they are going to call with an appointment for a consult with the main doctor

I’m constantly reminded to keep up with my own healthcare and advocacy.  Besides, getting treatment and surviving the journey, there is so much work to do.  Stay up to date on insurances, appointments, records and payments.  It’s a lot. Most days, I have no trouble keeping my head above water.  It seems today is not one of those days.

I’m so thankful for my family and friends for their constant support and encouragement.  You all really do rock!

That’s the short of it.  I would really love to go for a run now to clear my head but it’s bitter cold and windy today.  Twice, I’ve had to collect my recycling can from my neighbor’s front yard.


Category: Uncategorized

My Fight, Round 5

Round 5. Ding, Ding!life gets tough

Good news! Upon examination, the doctor has noticed that my swollen lymph nodes have gone down.  Also, my blood work is still within range.

Today was the fifth Tuesday in a row that I’m being treated with Arzerra (Ofotumumab).  I have 3 more Tuesdays in a row before I change to once/month.  Instead of getting the Benadryl by drip, my doctor has allowed that I take the pill form.  This means no more drunkenness, although I did have a pretty good nap.  In fact, I slept through most of my treatment!  On the positive side, my time there seemed to fly by.  However, I look forward to the time of forced rest to catch up on research, reading and blogging.  By the time I woke up, I only had about 30 minutes left.  So instead of doing what I was hoping to do, I played a game on Facebook for the duration of my time there.

It seemed to take a few hours for the effects of today to wear off.  My legs hurt, I was exhausted, and Shelby says I glow green after.  I also had an appetite that would put Michael Phelps to shame (remember his insane caloric intake during the Olympics?).

I’m still having the same side effects:  Insomnia, constipation and difficulty focusing.  Also by the end of the week, I develop some annoying nausea.  And last week, I got some tingling in my face and lips.  I can’t say for sure if that’s from the drug but it is something I will continue to take notice of.

The past few days, I’ve been awoken by RLS (Restless Leg Syndrome).  It’s basically a sensation in my legs that only goes away by movement and usually happens when you lay down or are sitting down.  I’ve had symptoms of it for years and comes & goes. It can be very disturbing to my (and Shelby’s) sleep.  Sometimes a heating pad will help.  When I brought this up to my doctor today, she suggesting taking iron supplements.

I guess that’s it for tonight.  I’ve been told by a couple of people that I’m not blogging enough so I’ll make an effort to work on it some more.  In my defense, however, I had to focus last week on finishing a final project paper for my most recent class.

Good Night!

Ding, Ding!


Category: My Fight

My Fight, Round 4

girls cant whatRound 4

Ding, Ding!

Because I did not have to see my oncologist this morning, I opted to work a 1/2 day before going to the hospital at 10:30AM.  I braved the falling snow in the dark pre-dawn sky to get to work before 6AM.  Even though I’m tired that early in the morning, I love getting in before the bustle of the business day begins.  I can get so much work completed!

As requested, I called ahead to the infusion room before I left work and they were able to order the drugs from Pharmacy. By the time awesome nurse Nicole got me hooked up, my pre-meds were ready.  I had a slight reaction to the Benadryl drip again and had that feeling of drunkenness before I passed out for about an hour and 15 minutes.  When I woke, I felt foggy and lacked focus to do some of my work I was planning on doing (this blog, my research paper, etc).  I understand that the steroid and Benadryl are much needed, but I almost feel that the pre-meds are having more of an effect on me than the chemotherapy drug.  I left for home by 3:40PM.

Note for next week: Ask my oncologist about taking the pill form of Benadryl (in the past, I have not had such inebriating effects when ingesting the pill).

I got a visit from a staff dietician, Jennifer today.  I had requested to speak with her last week about two issues I am having: (1) what can I eat to alleviate the constipating effects of the drugs, pills, and pre-meds, and (2) what can I eat that is healthy but will still satisfy my steroided appetite?  I also asked for her opinion on the effects of diet soda and her insight on organic vs non-organic foods.  I lost focus mid-way through our conversation when the Benadryl effects started to kick in. Fortunately, she gave me some paperwork and I took notes when I could concentrate.  But more on that in another post!  :-)

I also went to my first support meeting in years tonight.  It was held at the hospital by the Oncology Navigator, Terry.  She is a fabulous women who makes the patient feel welcome & comfortable and she reminds us that we as patients have rights!  Tonight’s meeting was small but intimate….I think it was the perfect size for me on my first night.  The meetings are held monthly and I feel that I’ll get much more out of these meetings than in the past ones I have attempted.

As always, thank you everybody for reading and leaving comments.  I’m always open to any suggestions you have regarding my treatment and this blog. Ding, Ding!

Category: My Fight

Round 3

FAQ Round 3

Round three, Ding, Ding!

Today was round 3 of 12 of Ofotumumab.  My doctor visit went well and my blood levels were all within range.

I had a slight reaction to the Benadryl drip today, something that has never happened to me before.  When I was half finished with the bag, I felt a rush come over me.  I couldn’t explain how I felt, but new something was off.  The nurse (Nicole, she’s pretty awesome), slowed down my drip and kept an eye on me.  I learned today that this is not uncommon.  Nicole asked if I felt like I was drunk and that is when I remembered that feeling.  I wasn’t the fun drunk, where everything is wonderful and I want to make out with strangers, I was fail the field sobriety test drunk.  I don’t think I would have been able to walk a straight line if I had to.  Fortunately, I sobered up it about an hour (without a hangover) and got to take a little nap.

The rest of treatment went off without incident.  I can now get this drug as the maximum drip rate, which is about 4 hours. I got to the hospital at 8:30 AM and left around 2:45PM.  I set up an appointment with a dietician next week so I can ask her about some concerns.  Mainly I would like to discuss my ferocious appetite from the Decadron. After treatment, all I want to do is eat carbs, grease, sugar and salt.  It’s sad to admit that in the past after Shelby and I had cheesesteak for lunch, I suggested a slice of pizza less than two hours later.  Seriously, Decadron is no joke.

As of tonight, my legs from the knees down are sore.  I believe it to be from sitting all day –  this is an effect I’ve had for years from treatment.  I’m also having troubles concentrating (damn steroids). I don’t anticipate sleeping tonight but will try hard to do so.

Ding, Ding!


Category: My Fight
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