My Fight, Round 9

meinCapeMay

Round 9.

Ding, Ding.

Before I begin, I must apologize for not getting to this sooner.  The class that I am currently taking gave me an extensive amount of work the past two weeks including a mid-term, therefore my focus was on school.

On April 15, 2014, I had my 9th Round of Ofatumumab.

Upon arrival to the infusion room, awesome nurse Nicole accessed my port and drew some blood.  I then headed up to see my doctor.  I seems that I have a stubborn lymph node that does not want to go down in swelling.  I can feel it in my neck as did the doctor.  She said to continue my monthly treatments and to follow up chemo with another PET Scan.  If the scan shows any activity, I may begin the new chemotherapy pill Ibrutinib that was just FDA approved and is now available for CLL patients.  I guess we’ll just have to wait and see. My last Ofatumumab treatment is in July.

When returning to the Infusion Room, I had my vitals checked and began chemo.  I tried to study for my midterm but was succumbed to a Benadryl coma shortly after receiving the pill.  And even after I wake up, I’m pretty foggy and tired.  There is no studying or making any decisions.  All I want to do is lay down, eat and occasionally pee.

I don’t normally come out of the Benadryl fog until later in the evening.  Most people are winding down for the night but that is when the steroid kicks in for me.  I get a lot of studying done when I’m up all night.  In fear of waking Shelby, I don’t turn on the TV so I just make my way downstairs and play on the computer or read.  I think I finally fell asleep around 5AM.

My normal day after chemo was complete with laundry being done, grocery shopping and cleaning.  I have so much energy, I can’t sit down.  It was not as hard to focus as when I was getting weekly treatments but I am still somewhat scatterbrained.  I even took my midterm online (they now offer online proctoring.  Isn’t that incredible?!).

The timing of my treatment and Easter weekend worked out this time.  Because my work was closed on Good Friday, Shelby and I were able to get away for her birthday on April 18 to Cape May.  Neither of us had ever been there.  It’s a really cute town but being at the beach in April, it was pretty chilly! We made the best out of it (as we always do) and both enjoyed our getaway.  We needed a little escape…even if it was only for a couple of days.

Now, two weeks later, everything is normal and we are living life.  This past Monday Cher ticket(April 28) we saw Cyndi Lauper and Cher in concert at the Wells Fargo Center in Philadelphia.  They were both incredible, sang live and had crazy energy!  We both loved it!  We are also working everyday and I continue to love my job.  They have been nothing but supportive towards me and I am so thankful for that.

I am also eternally grateful to all of my family, friends and supporters who continue to show their love and encouragement as we stand in the ring.  Hearing your cheers and love during the fight strengthens me, and I will continue to battle until I knock this damn thing out!

Category: My Fight

Losing the Decadron Weight Gain

mudrundogtagAfter 8 weeks of weekly treatments and Decadron boosts, the pounds have started to add up.  I’m not sure the amount exactly but my clothes are a little tighter and my esteem is a little lower.  I know that I although my appetite was healthy, the foods that I have eaten were not.  Having a steroided appetite is much like having a hangover appetite.  All one wants to eat are carbs, sugar, salt and fat.

What makes this difficult for me is that I’ve always been relatively fit.  Since a child I’ve been involved in some sort of sport or activity.  I even ran a mud run last year with my best friend, Shara a few months after completing my 2nd go at chemotherapy. So gaining a few pounds every round of treatment has really started to add up.

So now that my treatments have been pushed to monthly and the season has shifted from Winter to Spring, it is time to move more and eat less.  I don’t plan on dieting, I plan on working.  The calories in must be less than the calories out.  It’s simple math.

Here we go – the next step of this unending journey. Wish me luck.

meandSharamudrun

Category: Making Weight

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

Round 8 – last of the weekly treatments!

Ofotumumab bagRound 8, Ding Ding!

Tuesday, March 18th was the last of my weekly treatments of Ofotumumab.  I do not need treatment for another 4 weeks (April 15th).

I was able to work for a few hours before I was at the hospital by 10:30 AM.  As always, awesome nurse Nicole had my drugs ordered so I was hooked up, had my premeds and was started the chemo drug by 11AM.  Talk about efficient…

I slept for about 2 1/2 hours during the treatment.  It’s funny how the Benadryl hits me.  One minute I’m reading all of the supportive Facebook comments on my computer and then the wave of fatigue hits!  In an instant, my eyes start to close and I can hear the buzzing in my ears. When this happens, it’s time to shut down the computer, get tucked in with my blanket, recline, and let the potent effects of the antihistamine guide me to sleep.

Between the water I drink during the day and the amount of fluids I’m given during treatment, it’s a race to the bathroom when I start to wake up.  I’m sure it’s comical to watch me escape the blanket’s web, unhook the IV stand from the electrical outlet and run to the bathroom in a fury.

Since everything went well, I was able to leave around 3:00.  I was still somewhat groggy but feeling well.  Shelby and I went for a quick bite to eat (I wanted a post St Patrick’s Day Reuben) and I later went to the monthly support group hosted by Nazareth Hospital.   This has been the second time I have gone and really enjoy it.  Terry Cannon, the Oncology Navigator is the facilitator but the group is very informal.  We all have a chance to speak and ask questions and oftentimes the subject drifts from living with cancer.  It’s a good community of people with shared experiences that can relate to the emotional traumas of dealing with the disease.  And somebody always seems to have it worse than you do!

I fell asleep around 6AM the next morning only to be awoken at 10AM by my running RLS legs (I forgot to take the iron the night before).  I’ve been trying to make the overnight hours productive while being quiet. I do schoolwork, computer research, plays computer games or read my book.  Sometimes I have difficulty focusing so I just do whatever my head permits.

While sleeping at treatment, I missed a call from UPenn. It was an automatic confirmation message reminding me of my appointment on Friday.  The funny thing is I never made the appointment! When I got home, I called them to make sure this was correct and sure enough, I have my first appointment about the immunotherapy trial this week!  And I’m either really forgetful, or the scheduler made a mistake but I have NO RECOLLECTION of making this appointment! Let’s blame her for the sake of argument…  :)  Both Shelby and I both have to take off Friday for this – thank goodness we both have understanding bosses!

Well, I guess that’s enough for now.  I’ll be sure to keep everyone up to date on how my appointment at UPenn goes.  Wish me luck!

Love you all!

Ding, Ding.

 

Category: My Fight

My Fight, Round 7 – continued RLS

zibelliwaitingroominfustionroom

Round 7

Ding, Ding

Tuesday was my 7th weekly treatment of Ofotumumab.  Only one more to go until I get a little break.  It.can.not.come.soon.enough!

I’m sure I’m sounding redundant but the Restless Leg has been awful!  It doesn’t start until I try to fall asleep and keeps me up most of the night.  I’ve tried pillows, heating pads, a sedative prescribed from my doctor, massages, even something suggested by a pharmacist but nothing has worked.  When I saw my oncologist yesterday, she suggested taking an iron supplement even though my iron levels are in range.  She had read that iron has worked in patients so she said to give it a try.  I took one supplement last night and it seemed to help.  I still didn’t fall asleep until almost 6AM but it wasn’t because my legs were running.

Because I had not been sleeping well, I fell asleep almost as soon as I ingested the Benadryl and stayed asleep until a half hour before treatment was over (minus a bathroom break – I get a LOT of fluids).  Shelby even came to visit me and left 5 minutes later because she knew I needed some rest (she’s so good to me).  Those three hours were really crucial.

According to my vitals and tests, my blood pressure and blood counts are great.  I did gain 1 1/2 pounds from two weeks ago, but I’m sure that will come off as soon as I can get back to work full time and the weather warms up a little.  Also, once I’m off the steroids, my eating habits should resume to normal.  I’m trying to eat well but have little self control on the day’s of treatment. If you are in my way and I am hungry, I will take you down!

As always, thanks for the love!

Ding, Ding!

 

Category: My Fight

My Fight, Round 6 – Decadron and RLS

rocky statue

Round 6, Ding Ding!

I’m sorry that it’s been a few days.  Between the steroids and lack of sleep, I couldn’t get my thoughts together.

Tuesday was Week 6 of Ofotumumab.  Only 2 more weekly treatments and then I switch to monthly sessions.

I was able to work from 6-10AM before being at the hospital by 10:30.  Because I called ahead, awesome nurse Nicole (and Peggy, too!) already had my premeds ready to go so I was hooked up immediately, had my vitals checked (my blood pressure rocks) and was started on the chemo drug by 11:00.

I was REALLY hoping to take a Benadryl nap but only managed to fall asleep for about a half and hour.  The week prior I had slept very little and have been battling Restless Leg Syndrome nightly. RLS is a tingling sensation you get in your joints (knees and elbows for me) that only subsides when you move.  The problem is that as soon as you stop moving, the tingling comes back.  It makes it very difficult to fall asleep.  Up until Tuesday, the only thing that offered minor comfort was a heating pad but even that wasn’t helping me fall asleep.

I looked up the side effects of Decadron at Drugs.com and it turns out that RLS can be a consequence of the steroids.  No wonder I’ve had it so bad lately.  I’m getting 20mg of the stuff every week!  I’ve never had that much given to me so frequently before.

I asked for some advice on my facebook page (www.facebook.com/cancerboxer) and was given some suggestions such as a pillow between my legs and massaging them when the tingling begins.  So far, they have helped.  Now I’m up all night because I’m STEROIDED OUT OF MY MIND!

I really struggled Tuesday night.  I was tired from the Benadryl but was jittery from the Decadron.  I felt like I was losing my mind! With Shelby’s encouragement, I was able to lay down for awhile after dinner but still felt awkward, unfocused and weak when I got up.  I eventually fell asleep around 4:30AM Wednesday morning.

The day after chemo is always a house cleaning, refrigerating cleaning out kind of day.  I can’t focus on schoolwork, real work, television, the computer or blogging.  All I can do is move and try to stay busy.  I went grocery shopping, prepped food for the next few days, did laundry, cooked dinner and cleaned.  I have the attention span of a flea.  Why couldn’t I have chemo in the summer when I can do yard work and enjoy the sunshine!?  Even today, Thursday, I am having difficulty focusing but am managing to get some work complete.

It seems that, according to my pattern, I’ll sleep tonight.  Tomorrow, I won’t set my alarm but will go to work when I wake up. I have been very fortunate that my company is as awesome as they are.  I have not felt any pressure from them on the amount of days I am missing.  I can assuredly say that I am putting more pressure on myself to return to work.

On non-cancer note, this week also starts my latest class at Thomas Edison State College.  I’m taking Intro to Marketing.  My hopes are to apply anything useful to this blog.  I am still very green when it comes to this and am quite sure I can promote it better.

As always, thanks for reading and for your continued support.  I love you all!

Ding, Ding!

http://www.drugs.com/sfx/decadron-side-effects.html

 

Category: My Fight

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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