Thursday, June 23, 2011

Round 5

We are waiting for the call to go in for Round 5 of chemo.

As we move into the Consolidation phase, there is a lot of new information to read through, new drugs to worry about, new side effects to manage and a new schedule.  Last week, we reviewed and signed the consent form for the remainder of Scarlett's chemotherapy treatment.  It is a 25-page document that outlines all the schedules, medications, side effects, risks and rights for the next 8 months.  The last time we signed a consent like this, it was before chemo began, and we were so overwhelmed with information, it seemed like an encyclopedia volume of scary stuff.  This time, we know what to look for and what to ignore.

First, the schedule for the next 8 months.  Each cycle is still 28 days.  The dates are loose, since everything depends on her counts, which are recovering more slowly each round.

Rounds 5 and 6 (June and July)
  • Day 1: Cyclophosphomide and Etoposide (IV, each over 1 hour)
    • Also given Mesna, a medication that protects the bladder from the effects of chemo.
  • Day 2: Carboplatin and Etoposide (IV, each over 1 hour)
  • Days 3-28: NO CHEMO!  She gets to rest, recover and relax.  She will still visit the clinic each week for blood draws and urine tests, need multiple blood and platelet transfusions, as well as get daily injections to help bring her immune system back. 
Rounds 7, 9, 11 (August, October, December)
  • Days 1-21: Cyclophosphomide (Oral)
  • Days 1-10: Topotecan (Oral)
  • Days 22-28: Rest. 
Rounds 8, 10, 12 (September, November, January)
  • Days1-28: Erlotinib (Oral)
Theoretically,  we will not have to be inpatient at the hospital after July.  The oral drugs will be given at home, mixed with syrups or applesauce (pending we can get her to eat by then - otherwise, we will have to keep the NG tube). 

MRIs will continue every 2 months, as well as hearing tests to monitor the effects of the chemo (though she is no longer getting ototoxic drugs, the study is monitoring the longer term effects).

Some of the drugs she will be getting are the same from the last 4 months, but there are some new additions, with side effects all their own.  The study breaks the side effects into 3 categories: Likely, Less Likely and Rare but Serious.  I try to focus on the Likely column, but that Rare but Serious column always catches my attention.  Each drug has nearly a full page of possible side effects listed.  Just some:
  • Cyclophosphomide (a hold over from Rounds 1-4):
    • Likely: Loss of appetite, nausea, vomiting, hair loss, lowered blood counts.
    • Other possiblities: Diarrhea, bleeding in the bladder, blurred vision, rash, heart muscle damage, a new cancer or leukemia...yes, that's right.  A new cancer.  Rare but serious, for sure.
  • Carboplatin (another repeat from earlier rounds.  This replaced Cisplatin when it destroyed her hearing).
    • Likely: Nausea, vomiting, lowered blood counts, abnormal electrolyte levels.
    • Other possibilities: Hair loss, constipation or diarrhea, rash, tingling in fingers and toes, mouth sores, new cancers later on.
  • Etoposide (new): 
    • Likely: Nausea, vomiting, hair loss, weakness, lowered blood counts.
    • Other possibilities: Decreased blood pressure, rash, mouth sores, finger/toe nails loosening from nail bed (AHH!), liver damage, new cancers later on.
  • Topotecan (new): 
    • Likely: Diarrhea, nausea, vomiting, lowered blood counts, fever, hair loss.
    • Other possibilities: Headache, rash, mouth sores, chest pain, shaking chills, severe allergic reactions (always a possibility with any new drug).
  • Erlotinib (new):  This is a new drug in the cancer treatment world.  The notes I have say it has been given to around 4,000 patients...not that many.  I am pretty sure this is the "experimental" part of this research study, to see if this particular drug has a better outcome for babies with brain tumors.  It is not exactly a chemo, but rather a drug that supports the chemo, I think.  Because it is new, long term effects are not known.
    • Likely: Skin rash, diarrhea, nausea, vomiting, fatigue, bone pain.
    • Other possibilities: Dry skin, headache, eye infections.
Other notable parts of the consent form include:
  • This protocol continues to monitor for 5 years after treatment, with MRIs, physicals, blood work, etc.
  • Our doctor would remove her from this study if a better treatment was discovered.
  • "We cannot and do not guarantee or promise that you will receive any benefits from this study."  While this generally pertains to financial benefits, I can't help but see this as ominous.
  • Other choices in treatment, including choosing no treatment, in which case, the disease will get worse.
  • The study pays for the services, supplies, procedures and care associated with the study, but we are still responsible for routine care.  I am not sure how this breaks down with our insurance.  We'll never really know how much her full treatment costs, though, the sidebar total is getting pretty "impressive" (as the doctors like to call big things).
Seeing it all on paper is much more frightening than the day-to-day experience.  She's doing well, and it seems to be working, so I don't care what they say could happen.  We have put all our eggs in this basket, so to speak.  We have to believe it will work.

Today we find out if Cousin Orange-o is a Pink-o or Blue-o!  :-)  Lindi and Mike are going in for their 20 week ultrasound later today. 

Also, please keep the Nhu family in your thoughts.  Their 6 year old daughter was recently diagnosed with a brain tumor, which will be removed in surgery tomorrow by one of Scarlett's neurosurgeons.  They found our blog and we met yesterday to answer any questions we could.  They don't know yet what kind of tumor they are dealing with, so we can all hope that it is benign.


April said...

Sends lots of love and good thoughts to you, Lindi and Mike, and to the Nhu family.

Anonymous said...

Thoughts and Prayers to you and your little girl.

Heather224 said...

I think about Scarlett and your family every day! It has now been 6 days since I was diagnosed with my brain tumor. I had my 2nd set of MRIs today and chest x-rays. Tomorrow I meet with a 2nd neurosurgeon to see what his thoughts are. In the meantime, I am trying to get into Johns Hopkins hospital.

I am unaware of what type of tumor I have and if it's benign or not and I am terrified. Little Scarlett gives me hope and I pray for her health and happiness.

I have my own blog which was mainly a photo blog but now I am starting to include bits about my diagnosis. I know you're busy but if you ever care to take a peek, it's at:

God bless!

Mama of Two said...

We think of you and your family often. I'm glad that there is more time at home in your future! Sending love, positive thoughts and prayers your way.

Lady Niblet's Mama said...

Sending my love and thoughts & prayers to your family and adding the Nhu family too.

Jen Isotalo said...

Yes, I look at that "impressive" total all the time and think, how in the world is that possible?! I would love to see a running total of donations you have received too if you want to or can share. Prayers for Scarlett and your family! :)

Kalani said...

I started following your story on BBC, as I am in the October 2010 babies group. I haven't posted here before, but thought since I stop by frequently to check on y'all I might as well leave you a comment to let you know that I think about you guys often and support you from afar! Glad to hear Scarlett is doing well, and I'm happy this round will *hopefully* have a lot less hospital time!


Pirates' Mama said...

Thoughts, prayers and hugs from PA. Thinking of your little fighter everyday. Stay strong Scarlett.