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continued from first KEVIN post:

After much research, my husband decided to try MIBG at Emory University in Atlanta where we live. MIBG stands for a long chemical name, but basically, MIBG is a substance that is absorbed by my husband's particular neuroendocrine cancer. They attach Iodine 131 to the MIBG; inject it into the patient; and the radioactive iodine nukes the tumor with small beta rays. The patient is emitting longer gamma rays, however, while the radiation is in his system, so the patient must be in isolation at the hospital for a week.

My husband had MIBG the last week of September 2002. The drugs used were made at Univ. of Michigan and flown to our hospital in Atlanta the morning of the treatment; re-tested here; and injected that evening into his body.

He has had some general, vague queasiness, and occassional vomiting, but it is nothing like the side effects he experienced from streptozocin chemo a year ago. He is still teaching. He is fatigued and resting or asleep when he's not eating or teaching his classes, but he is mostly in good spirits -- I am writing on November 5, a little over a month since the treatment ended.

We will find out via a CAT scan in January 2003 whether the MIBG treatment did anything. There's a 30 percent chance it does nothing; 30 percent change it shrinks the cancer; and 30 percent change it stops the cancer's growth.

A few more notes: MIBG has been around since the 70s. Developed at University of Michigan. It is still labeled as 'experimental' because it is expensive and is for rarer neuroendocrine cancers and one childhood cancer. No drug company can make money off it; therefore, no drug company will take it through clinical trials. However, our insurance has said it will pay 100 percent of the cost of the treatment for my husband.

Part of that decision may have to do with the fact that my husband has an 'orphan' disease, a rare cancer, for which there isn't much out there that is approved in the way of treatments. So sometimes, even though the policy says the company will not pay for experimental treatment, it indeed will in such cases; otherwise, people with rarer diseases are discriminated against.

If you are in this situation I would suggest enlisting the doctors to negotiate with your insurance company. They know what to say and how to handle things, and they may get a good research paper out of being able to treat a patient with a less-common treatment. My husband and I insisted that the drs. negotiate it; best thing we ever did. No hassles for us at an already tense time.

Finally: Be aware that being in isolation is psychologically and emotionally tough, especially for people with chronic and potentially terminal illnesses. It was for my husband. I mean, once you are in there with only yourself, (yes, tv and phone, but no humans) you really have to face the fact that you have a really scary disease.

Get the drs. to prepare you as much as possible for the experience, to describe the room to you, maybe see if you can visit to see what it's like. My husband was upset when we walked in and saw every surface he would touch covered with Saran Wrap! Nobody prepared us for that. It simply makes cleaning easier in a room where the patient's tears, saliva, sweat, you name it, is radioactive. But you can imagine that he had to adjust to that site. I mean, even the inside of the toilet bowl was protected with Saran Wrap! Or some sort of plastic wrap.

That's all for now -- I will add something about results after we get the CAT scan in January.

Posted 11/06/2002 11:14 pm by Lea
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