A crapshoot?

Vincristine. Doxorubicin. Eptoposide. Cyclophosphamide.

I have no idea how to pronounce these words but the sight of them is getting very familiar to me.

In the quest to help Elizabeth and Ben make a decision about Jacob’s treatment, I have been scouring the Internet for information. 

Elizabeth did get a call back from the oncologist, who explained that the standard treatment for this tumor is similar to the clinical studies except there are more medications added and the dosages are stronger as well. He even gave her his cell phone number, which is a good sign.  However, when she called it, she got news that his father had just died. How do you ask questions after that pronouncement?

The head of the St. Jude’s hospital affiliate in Peoria, Illinois also got back to us, and basically assured us the same protocol would be followed at the University of Iowa with these studies, and the travel time needed to be taken into account with a cancer like this, where the child would be in the hospital several times, either with treatment or because of it.

Then he asked if he could put Jacob’s name in the prayer box, a question we won’t hear at the University of Iowa.

In the meantime, I researched the standard treatment, which we know has a 40% survival rate for this type of tumor.

Unless the American Cancer Society’s information is totally bogus or out of date (and it may well be, I’ll concede that), the standard treatment resembles the clinical trials in medication only, because the course of treatment is not the same at all: Surgery, followed by radiation therapy to the abdomen and low doses of radiation to both lungs. This is followed by chemotherapy with four drugs, along with mesna given for about 6 months.

The clinical trials have the same drugs and one regimen adds just one additional drug. However, radiation is begun at the same time as chemo.  More drugs, more days of the drug, more radiation, and higher doses of radiation, and the two therapies begun concurrently.

The other study adds an additional drug into the mix, a combination of irinotecan and vincristine and delays radiation until after a window period of just those two drugs and measuring the response of the tumors. Depending upon whether or not they grow or shrink, the guinea pig, er…I mean cancer patient, then goes into either the regimen I just described or a similar regimen.

I’m sorry about the guinea pig comment. I am well aware that it is clinical trials such as this one that have increased the survival rate in cancers. I support clinical trials.  My husband participated in a clinical study of the drug erbitux four years ago.  I helped him make that decision by doing just what I am doing now; researching. That decision was much easier since it was a Phase III and not a Phase II trial.

As a loved one of a cancer patient, do a google search for the additional drug added to the cocktail mix in the window therapy trial: Irinotecan.

Come on, you know you want to.  Your fingers are just itching at the keyboard.

Then, as a good parent who wants to give your child every chance, make the decision to put that drug into your child’s tiny 38-pound body.

Oh, his liver and heart function will be monitored closely, you are told, and you know that is true. You also know this combination of drugs has been used to treat another type of childhood cancer, and the tumors shrank. Then you read the results of one study that showed that despite the tumor response to this particular combination of drugs, the outcome (survival rate? reoccurrence rate?) was approximately the same.

Hit it hard and hit it fast, you are informed. This is a bad cancer, and the unfavorable type doesn’t respond as well to chemotherapy and radiation. Let’s throw some more drugs at it.

And completely change the order of the standard regimen.  See if we can shrink the tumors first with this combination of drugs and then, if they are doing well, add another regimen of this same combination of drugs on day 22.  We don’t know what this regimen does for those whose tumors are not responding to these two drugs.  The delay may mean the tumors grow and are less responsive to the radiation.  Or they may shrink and be more responsive. We haven’t exactly done it this way before but by allowing your child to participate in this trial you may or may not help other children in the future.  We might find out this is the actually the best way to go with these tumors. Or not.

Oh, yeah, and it you don’t like either of these trials, you can always go with the standard treatment of care.  And if you ask a lot of questions, we might even tell you what that is.

Now, have a nice weekend and we’ll see you on Monday.

2 thoughts on “A crapshoot?

  1. Pat says:

    After reading all of this; I would go with the standard treatment; when I was reading all of your research on the other options; it started sounding like a crap shoot. Only the parents can make the final decision, though, based on what the doctors say and what they have found out through research.

    Beth and Ben need to know that any decision they make; they live with; whether the results are good or bad. They accept the outcome ; they did their best for their child; that is all they can do. If it doesn’t work; it is not their fault; if it works; that will be wonderful !! May God help them through to their final decision…………….

  2. Cathy S says:

    My heart goes out to all of you. I’m in tears thinking of a 38-lb child going thru this, which brings many adults to their knees.

    God be with you. I’ll pray for you all.

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