Category Archives: Uncategorized

Round 10, Cancer and chemo TKO

Chemo, Round 10.

Ding, Ding.

I was TKO’d before the round even began.

I’ll start from the beginning.

me with Sophia

Bryan

Baby Bryan

Before I went home for Mother’s Day on Saturday, I felt another lymph node on the left side of my neck.  Shelby felt it, too and we decided that I would bring this up to my doctor at my upcoming appointment.  That Tuesday, I went to the infusion room, had my port accessed and blood drawn by awesome nurse Nicole and headed up to see Dr. Zibelli.  The first thing I told her (besides the formalities, of course) was about the swelling.  As soon as she touched my neck, she felt the growth and immediately stopped the chemo.  She told me that my body has developed a resistance to Ofatumumab so it was no longer working.

The doctor then suggested Imbruvica which is the new chemo pill for CLL.  It was just approved by the FDA this year and is having success in other patients.  I’ll be taking 3 pills once a day.  The major, most common side effects seem to be nausea, low blood counts and excessive bleeding.  There is also a risk of kidney damage among others.  Once I begin this drug, I’ll be getting my blood drawn weekly to monitor my body and hope it is not doing more damage than good.

shawn

Shawn

Now, I’m just waiting for the proper approvals and red tape to be cleared.  My understanding is that this drug is very expensive and it’s not something I can get at my local pharmacy.  There is a company working with my insurance company and the supplier to keep the cost to me limited.  As of now, I’m still waiting on the supplier to see just how much my co-pay will be.

Personally, I feel very disappointed and frustrated.  Just as I am about to move forward, I have to take a step back.  There are many opportunities at work coming up that I do not want to miss.  Shelby and I have also been discussing taking a real vacation (abroad maybe) but again, we have to put our plans on hold…at least until we know what this new drug is going to do to me.

shelbyandsophia

Emma & Shelby

For now, Shelby and I continue to move together and try to stay positive for each other.  We had the girls last night (Emma and Sophia) and I got to see my boys last weekend (Shawn and Bryan).  And hopefully, the weather will dry out so we can get out of the house this weekend.

People continue to amaze with their kindness and affection.  Not only are my friends, family and readers sending constant love, I’m receiving support from total strangers.  Thank you to everybody who continue to send some love, prayers and energy.  I love you.

 

 

Category: My Fight, Uncategorized

PENN CART-19 trial visit

On Friday, March 21, Shelby and I braved the I95 construction traffic to meet with Dr. Porter and his team at University of Pennsylvania Hospital fairmountparkregarding a CART-19 immunotherapy trial study.  Our impression of this appointment was that we were going to begin the process of the treatment.  We misunderstood.

The first doctor to arrive was Dr. Huntington, a fellow at UPENN.  We talked about my symptoms and history as he entered the information into the computer.  He then went on to talk about how I may have to consider a stem cell transplant (SCT) in the future because of my age and generally good health.  He also gave some interesting tidbits that we noted:

– according to my latest bone marrow biopsy, my bone marrow contains 10% CLL.

– my lymph nodes are also effected from the disease (this we already new from the PET scans).

– in this current study, there are only 2 spots left.

– they are having great success with ALL (Acute Lymphocytic Leukemia) patients (90%), and moderate success with CLL (my type) patients (just under 50%).

– the study is only 3 1/2 years old.

– there is a strong likelihood of being hospitalized within a few days of the infusion with extremely low blood pressure and flu-like symptoms.  In fact, all but one patient had to be hospitalized from a week up to one month! They do have an antidote to quell these effects but have to wait until the symptoms arise.  So far, they do not know if giving this prior will have any positive outcome.

A little later, Dr. Porter came in with Dr. Huntington to speak with us.  He gave a brief overview of the trial and noted that he is one of the names on the patent.  He also stated that I am responding well to my current regimen of Ofotumumab (Arzerra).  And like Dr. Huntington (and 2 Jefferson doctors), I may need to one day consider a stem cell transplant.  For us, a SCT would be a last resort because of the risks and recovery time.  And after everything, there is still only a 50% success rate.

The outcome of this appointment was that even though I am a candidate for the CART-19 immunotherapy trial, we are not going to move forward because of my positive response to chemo.  We also made an appointment for August after I am finished with treatment and have had my latest PET scan. Although this is not what we were expecting, I am satisfied with the doctor’s expertise and the time they took to explain everything.  It was definitely a lot of information to absorb!

Another interesting note:  We expressed our concerns of why the cancer keeps returning as soon as I finish chemo and that I can get into remission but not stay in remission.  They said that there are active cancer cells and sleeper cancer cells and the chemo is only attacking the active cells.  When I come out of remission, it is the sleeper cancer cells that have awoken.

 

 

 

Category: Uncategorized

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
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