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Pancreas Cancer

islet cell was posted 06/01/2002 11:08 am by Lea
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Hi Joann, I am so excited that you are still a-okay after one year! That is great. This is long but I want to tell you everything in case it helps.

My husband was diagnosed in Oct. 2000. They removed 1/2 my husband's pancreas and all of his spleen. Six weeks after that they gave him six weeks of radiation to the pancreas. The first three and last three days of that they gave him 5FU chemo to enhance the radiation effect. The reason they gave him this was that there seemed to be cancer in the area of the lymph nodes there, but not in the lymph nodes.

He did great but there were wierd things in his liver that didn't come out as cancer in a biopsy in January. He has a tendency to form benign cysts, so it would not have been crazy to see wierd things in his liver that weren't cancerous. However, a biopsy in July 01 showed the cancer was in his liver, although his pancreas was clean.

He had streptozocin for a week in Aug. and a week in Sept. but didn't tolerate it well in comparison to the shrinkage obtained so they took him off. Other people at this board, including survivors, tolerated streptozocin relatively well and one of them, I think Josephine, who still posts, has been cancer-free for 23 years. I think another woman who took it has been cancer-free for 17 years. So my husband's experience is only one story.

We went for a second opinion to Sloan-Kettering in January 02 because our local dr. was pretty much putting my husband out to pasture. The S-K people said they could not cure it once it was in the liver, and that liver surgery would be risk for him. In his case, they would have to remove 75 percent of his liver, and the drs. felt the cancer probably would come back, anyway. However, they told us there were options available to stop it from growing along the way and buy time for quality living, and who knows, maybe something better will come along.

Right now he is on monthly injections of a hormone called sandostatin. That seems to be working -- he feels good -- and has quarterly cat scans. Very little side effects except for nausea first three days after shot, which is controlled with Zofran. He is able to work, although he does need lots of naps and rest.

All that said: Everyone is different. My husband has a seriously bad family history of cancer on his dad's side, and his islet cell is behaving more aggressively than usual. On the other hand, a fellow employee of mine had only surgery several years ago, just like you, and is a-okay, just like you. No recurrence. I also know a woman in our area who is about 70 or so and has it, I think in her liver now, and she had traditional treatments but has been able to forestall any recurrence or progress for several years, according to her son, also my co-worker. She has been using alternative regimens such as food, vitamins, herbs, etc. And of course there are the two survivors I mentioned above who did streptozocin.

People have beaten or managed islet cell in many different ways. I am no doctor, so I don't know what is best for you, but it has helped me to know that different people get to the same destination -- as good a health as posssible with or after islet cell -- in different ways. Thought it might help you, as well.

One thing I can say for sure is that it is so important to be sure you have an oncologist who knows islet cell well. It is incredibly rare compared to adenocarcinoma, the most common and aggressive type of PC. Our experience, even in Atlanta, is that few drs. know islet cell as well as they know other cancers. Once someone posted here that his/her dr. in Fla. only saw one case of islet cell every three to four years.

If you are really worried, you could always get a second opinion -- our insurance paid for the opinion at SK 100 percent. We saw Eileen O'Reilley, but she recently left for Ireland; we will see I think Leonard Saltz?? if we need to go back.

Another thing that you could do to ease any fears is have scans every quarter. A cardiac surgeon friend of mine told me that if he were my husband, even if he'd done well and they eventually reduced him to six- month cat scans, he'd probably do it quarterly for a while just for his own peace of mind. I don't know what insurance says about that, but just mention that since my friend is a doctor and told that to me.

I hope this helps in some small way.

Lea



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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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