Friday, September 28, 2007

7 is not a lucky number

As recently as 2004, standard first line treatment for kids with neuroblastoma consisted of seven cycles of chemotherapy. As some of you may recall from my prior posts, chemotherapy is by no means a smart bomb; that is, in addition to targeting neuroblastoma cells, chemo also damages healthy cells throughout the body. It is for this reason that now whenever he watches T.V. or listens to music, Toby has to crank up the volume and ask (always politely) those around him to speak quietly. This is also the reason why Toby painfully struggles with horrible constipation; why he has headaches, lightheadedness, and a resting heart rate that most of us reach only with vigorous exercise; why he easily bleeds and bruises, often with no preceding trauma or other obvious trigger; and why routine coughs and colds most of us don't give much thought to are so potentially dangerous for Toby. These are the immediate consequences of chemotherapy. They are serious, frustrating, and life-altering. However, they pale in comparison to the possible long-term side effects like, infertility, deafness, heart and kidney failure, nerve damage, hormonal imbalance, secondary cancer, and even death. The last two are particularly ironic. Because of these significant "toxicities," doctors and scientists are continually trying to come up with more effective and less toxic treatments. In the case of neuroblastoma, such an approach was achieved by reducing the number of initial rounds of chemo from seven to five and by adding things like antibody treatment. Unfortunately, five cycles of chemo is not enough to rid all kids of their neuroblastoma. In these cases the first option often means resorting to a sixth or even seventh cycle of more chemo - this is what Toby has to look forward to.

After five cycles of chemo, Toby still had evidence of neuroblastoma in various parts of his body so he had a sixth cycle, incorporating one drug he had yet to be exposed to. Following the sixth cycle and radiation to his arm, Toby had re-evaluation scans; as you know from Mooki's most recent post, the news is not good. Toby still has disease in his bone marrow, as well as in his femur (the long bone in the leg). What this means is that Toby's disease is classified as primary refractory disease. What is the reason for the refractoriness? I'm not sure there's a single answer, but one answer Toby's doctor suggested relates to the significant amount of disease that Toby had when he was initially diagnosed, which is taking extra cycles to clear. I believe that the actual biology of the neuroblastoma is at play here as well. Whatever the reasons, Toby is now scheduled for a seventh round of chemo to start this Monday. This time he will be given three drugs he has never received, with the idea that the neuroblastoma cells might be (more) susceptible to this cocktail. Because most kids with neuroblastoma do not require more than five cycles, there is not much evidence as to the efficacy of these three agents, carboplatin/temozolomide/irinotecan. However, the toxicities of these drugs is known.

Carboplatin is a cousin of cisplatin, a drug which Toby received during cycles 3 and 5 and which can lead to an assortment of side effects including, hearing loss, kidney damage, altered nerve sensation, and low blood counts. Temozolomide also causes low blood counts, as well as nausea, vomiting, bruising (because it drops the platelet count), tingling in the hands and feet, and insomnia. Finally, there is irinotecan, best known for the severe diarrhea it causes. In addition, it can cause low blood counts, hair loss (so much for Toby's regenerating follicles) headache, sweating, and mouth sores.

Mooki and Stephen are anxiously awaiting the next phase of treatment which follows chemo - 3F8 antibody treatment. 3F8 acts in a different way than chemo. Chemo destroys cells, often by targeting a part of the cell responsible for cell replication or by preventing cells from correcting parts of the cell that are damaged. 3F8 on the other hand, is a biologic drug, it works in a different way by targeting certain cell receptors found only on neuroblastoma cells. For 3F8 to work most effectively neuroblastoma has to be completely or almost completely eradicated. This is the reason for an "unlucky" seventh cycle of chemo.

Mooki and Stephen desperately want to move on to 3F8 and its potential for making things right. They have mixed feelings about more chemo and are especially wary of the likely side effects, but like so many times until now they signed the consent forms agreeing to move on in the hope that this cycle will allow them to reach that goal.

Hoping is hard. I hope that my job as a pediatric hematologist/oncologist doesn't get in the way of the more important job of being Toby's uncle and Mooki's brother. I hope that I can think like a humanist and not like a doctor. I hope that Toby won't need hearing aides and I hope for hope.

Yoram

19 comments:

Anonymous said...

I am praying and praying and praying.

Love,

A Park Slope Parent Friend

Anonymous said...

Despite this unsettling information, what a gift to have Yoram's clear, sensitive and eloquent explanations. As a Park Slope parent who has been following this blog, I certainly hope that we can hope for hope along with all of you. I so appreciate being included here, and profoundly respect the poignancy of Yoram and Mooki's recent entries. With continuing good wishes for Toby and all of you,

Nancy W.

Anonymous said...

And more praying, and praying and praying.

With so much love,

A friend you don't know you have

LindaSueBuhl said...

A dear friend sent this to me in answer to my plea for guidance in prayers for Toby, Mooki and Stephen. Bless Yoram for his clear and terrifying report of the situation. Praise God for Toby in our lives - may we be allowed to continue this praise during Toby's healing.

Give ear to my words, O L-rd,
consider my pleading for Toby.
Listen to my cry for help, for answers, for healing,
my King and my G-d,
for to you I pray.
In the morning, O L-rd, you hear my voice;
in the morning I lay my request before you,
and wait in expectation that you will make Toby well,
that you will be the doctors' guide.

From: Psalm 5.

Anonymous said...

Mooki, I had coffee with your mother on the beach yesterday, she met me off the train (I live in Tel Aviv now) and we talked and talked, about Toby and how you are all holding up. And now I join in with hoping.
Thilde.

Paula said...

Thinking good thoughts for all of you. Wishing you a happy and healthy new year!
Paula (a Park Slope Parent member)

Anonymous said...

Yoram,
Thank you for the facts. They may be cold, but they are hard and solid and give structure to a painful, emotionally draining and comletely overwhelming situation. Facts help to focus.

Mooki, Steven, Yoni... I will be thinking of you and especially of Tobi this coming week. I hope you all manage to get out and soak up some of the gorgeous fall weather we are having this weekend.

Much much love,
Lynn

Regina said...

Dear Yoram,

I have never met you--but ever since your first post was forwarded to us at PSJC in April, I have appreciated your clear, calm and helpful updates.

I am especially moved by your willingness to share the challenges of being personally present as a family member, while you offer your professional expertise against the onslaught of unsettling data and uncertain treatments.

The hope I would add to your hopes is that the process of connecting with all of us provides some sustenance and support for YOU--as well as for Toby, Mooki and the rest of your family.

With deep thanks and many blessings,

Regina

Adele Weissman said...

Dear Mooki, Stephen and children, Our thoughts, prayers and love are with you all in these Days of Awe. While praying on Yom Kippur, Toby was in my thoughts and prayers constantly. May G-d find, in his infinite wisdom and goodness, the way to recovery and peace for our dear Toby. Adele and Barry, Netanya, Israel

Anonymous said...

dear toby
we are thinking of you and sending hugs and kisses your way!
xoxoxo

Anonymous said...

Every time I look at my little boy, I think of Toby and pray, pray, pray.

Anonymous said...

Dear Mookie, Steve, Yoram, and Yoni, Thank you Yoram for helping us to understand the reality that our little Toby is facing.
At Church this week,the Catholic liturgy has focused on the angels.
Psalm 91:11 says, "God will put his angels in charge of you, to protect you wherever you go." In the Book of Tobit, (Intertestamentary for Jews; canonical for Catholics), the archangel Raphael is the "healer"- curing Tobit's blindness, as well as the "protector", guiding his son, Tobiah, safely on all his journeys. Maybe the image of Raphael, as an "Invisible Force" would appeal to Toby's imagination, especially since he bears Tobiah's name. "May the Force be with you!" can have another meaning! As for us, we can all take comfort in this revealed Word of God: our angels are not fairy tales, but are truly spirits by our sides, "to bear us up lest we dash our foot against a stone." (Ps 91:12) Sometimes it's very hard to believe that God will "cover you with his wings; you will be safe under his care; his faithfulness will protect and defend you." (Ps 91:4), but we can cry to Him and beg Him to keep his promises. Blanche & John

Anonymous said...

Toby is in my thoughts and prayers every day. I am sure you are giving Toby so many hugs already, but please give him one more, from me. Toby has gained so much strength from your presence, Mooki, Stephen and Yoni. I send my thoughts and love to all of you, and especially to Toby.
Your Park Slope neighbor (and mom of three boys)

Anonymous said...

We are also praying and sending all the healing energy we can muster to you Toby and your wonderful family.

xox
A Park Slope Parent friend

Anonymous said...

I am hoping along with your family...Toby and your family are in my heart and thoughts daily...
-
Another Park Slope Friend

Anonymous said...

thinking about you all every day. hoping for hope, hoping for some peace and comfort for you all. hoping for some good news.

Anonymous said...

I hope the week of chemo is going at least reasonably well. Thinking of all of you.

Anonymous said...

We're at the close of another week. I know Toby is doing as well as he can, and I pray that he's not suffering too much.

Please, God, make this the last assault of poisons on his body, and let him move on to the 3F8!!!

Anonymous said...

Sending all our love to you Toby even when we can't visit and have fun with you. You are our good buddy. Love, Nils and Jens