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KEVIN-MORE2


I have gotten a lot of questions about MIBG -- it is kind of complicated to explain, and I want to share as much as I can. I will try to compile some of the postings I made about MIBG at the board here. This is current as of 11/8/02.

STATS FOR MIBG Message Text ...also, in case this is helpful: We were told there was a 1/3 chance that the MIBG would ease symptoms; a 1/3 chance it would stop the growth of the cancer; and a 1/3 chance it would shrink the cancer. We thought that compared to a lot of other options for neuroendocrines, those options were fairly encouraging. Also, from the papers we read, for those who had good results from MIBG, the results lasted anywhere from two months to one patient who still was seeing good results at two years post-treatment when that paper was written. The average we read about was six months duration of favorable results.

PRE-MIBG Message Text ...We had a dickens of a time getting the drs. to explain it to us, and my hubby was a little rattled when we arrived at the hospital, as a result. I'd like to help others avoid that. Will just write as I remember; ask me to clarify if needed or if I leave anything out.

HOW LONG ONE IS IN ISOLATION Message Text They had us arrive I think around noon or so on a Wednesday; he was released the following Monday morning. While he was in the hospital he was in isolation. I'll talk more about what isolation involves in a minute.

First -- when a person can go home is dependent onn that person's radiation level. The radiation safety officer comes in once a day to use a geiger counter to see what the patient's radiation level is. When it has dropped enough, the patient goes home. The way to speed the drop in radiation level is to drink as much water as possible. The radiation leaves the body via excretory functions, sweat, urine, etc. Drinking also reduces the amount radiation exposure the rest of the body organs and tissues receive, because it gets the radiation out faster. Drinking lots of water while in isolation is imperative. The nurses call in and wake you every two hours at night to ensure that you are constantly drinking, so at first, the patient does not get long hours of uninterrupted sleep, thanks to nurse calls, drinking and peeing!

RISKS TO OTHERS; TAKE THINGS HOME VS. NOT Message Text ....Second -- We got varying information on whether he could bring back home the clothes he wore and things he took into the room. Some of the medical folks said he couldn't take home anyhthing he wore or used in the room; others said you could take in and take out computers,etc.; others said you could take home things that were washable with water and soap. The latter folks said that stuff that wasn't washable either could not be taken home; or, that we could take it home, but we had to store it in a box in a remote area of our attic for three months. No, I am not kidding about this. I don't mean to be critical of the medical folks involved, and I appreciate the fact that my hubby got the treatment. I in fact thank God he got it! But I want you to know the reality of the varying advice we got. Nobody considered my husband's psyche. This is a big issue for me because I work in communications and have done a lot of study of risk communcation, and based on my study, these folks didn't do a very good job of communicating risks and procedures, etc.

We decided to send my husband in totally disposable. Old clothes, old shoes, paperbacks, and an old cassette player w/headset that we would throw away. I brought him clean clothes, shoes, etc. to wear home the day of his discharge.

We didn't want to take any chances. The issue with all this is the safety of folks the person is around at home, and his/her pets, kids, etc., because the person emits lgamma rays from the treatment for a while, and those can be risky to other living creatures at early stages of the treatment.

DRUG ADMINISTRATION AND SURROUNDINGS Message Text ....Actual Process and Surroundings -- If I remember correctly, they did additional blood tests and stuff on my husband the day he arrived. That morning, the MIBG had been flown in overnight via FedEx, and the drs. were re-testing it to make sure it was correct.

Kevin went into his isolation room -- at our hospital, it was an out-of-the-way room on a regular hospital floor -- probably around 3 or 4 p.m. I was allowed to stay w/him until the MIBG was administered.

In the room there were taped lines on the floor and butcher block paper. The butcher block paper indicated where he could go while he was having treatment --- he had to stay a certain distance from the door of the room. He did have a window in his room, a phone and a tv, a private bath, just like the average hospital room.

Every surface he might touch with his body, tears, sweat, saliva or excrement was covered in plastic wrap. Yes, even the inside of the toilet. Not the bed linens, but headboard and footboard of the bed, etc. They said this was to make clean-up of the room easier. This was unnerving to my husband; nobody told us about this in advance (even though, believe me, we asked...)

Nurses and people came in to see my husband and ask questions, share what they knew -- we actually knew more than some of the nurses did about the treatment. Finally the drs. came in. My husband had to take some Rugal's (sp?) solution before and during the week he was in isolation and radioactive, and possibly afterward, as well -- can't remember. It protects the thyroid gland. He took his own medicines and dosed himself, so nobody would have to come in to be exposed to him.

They set up heavy lead shields between my husband's bed and the door of the room. They hooked an IV in his arm up to the heavy lead container that contained the MIBG. I had to leave then on dr.'s orders, but the drug went into my husband's body with a special sort of pump that timed the dosage into his body. Then the drs. took the IV out and left my husband alone in the room.

He was to have no or minimal contact with humans for 24 hours, which he did. Again, this was because he was emitting gamma rays. The rays that actually kill the cancer are tiny beta-rays. I think they are about .5 mm long -- not sure.

He was evetually allowed visitors for a few minutes at certain distances behind the shield on subsequent days. The radiation safety officer said it was okay to go in, no problems if I ever wanted to have kids, etc. However, I did not go because I just did not want to take any risks, and given all the different information we'd given, I didn't trust what anybody was telling me. Probably I would have been fine to go in and visit; our state has some of the most stringent radiation protection laws in the U.S. But you can understand that with all the conflicting information we got from medical personnel involved, I wasn't taking chances. That was hard on my husband, but I did stop by each night with food he liked better than hospital food and I called him several times a day, let him talk to our dogs, dropped off Polariods of the dogs daily, stuff like that.

The medical personnel were to come in his room minimally, and they stuck to that with a vengance. Another reason my gut told me not to visit! Food trays were put in his room by the door and then the person would leave. Everything from food services was disposable. My husband read and watched tv and slept and called people.

GOING HOME Message Text ...He was allowed to go home, as I said, on that Monday. He had no problems or side effects whatsoever in the room except the emotional trauma of being alone. We were told we should not sleep in the same bed the first night, re: his radiation levels. We actually opted to not be at close distances for long periods of time or share the same bed for two weeks on teh advice of a friend with a nuclear/health physics Ph.D. He said it is best to not take chances, and we knew he had our best interests at heart more than any dr. so taht is what we did.

He has rarely had vomiting, maybe once a day on five days off and on since his treatment the last week of September. Has felt fatigued. We don't know if that is a treatment effect or a cancer effect.

USE ON OTHER CANCERS BESIDES NEUROENDOCRINE Message Text I have not *read* about it being used on adenocarcinomas, but since I was searching feverishly for the neuroendocrines, that does not necessarily mean that it is not being done. The main reason it works is because the neuroendocrine tumors absorb the MIBG; I do not know if the adenocarcinomas will absorb MIBG. This treatment is similar to what is done to treat thyroid cancer.

NOTE: You might go to www.pubmed.com and search for 'MIBG' and 'adenocarcinoma' together. Also, perhaps there is some *other* substance that adenocarcinoma absorbs besides MIBG that is being tried. The people who list clinical trials at the National Cancer Institute might know for sure. I do know there were some trials for neuroendocrine cancers using octreotide instead of MIBG that were being done at Moffett Cancer Center in Tampa. I hope this helps!

LIST OF MIBG CITATIONS http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,244440)/5840 53483

EXCELLENT POST BY JACKIE ON MIBG http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,248477)/5840 53483

LINKS TO OTHER POSTS I'VE MADE ABOUT MIBG http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,233084)/5840 53483

http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,244437)/5840 53483

http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,248195)/5840 53483

http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,248610)/5840 53483

http://162.129.103.56/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(10598,253364)/5840 53483




Posted 11/08/2002 10:02 pm by LEA
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