Monthly Archives: March 2014

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
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