Islet Cell Carcinoma

I hope you are up to answering some questions. Your husband has had it for 7 years, and you said lots of interventions, my qyestions are what interventions and what for? So far I had blood clots in my lungs and fluid around my heart, my oncologist still says I have plenty of time. Both occurences were sudden, scary and very dangerous. Are the doctors doing anything on a routine basis for treatment, or just waiting,watching and treating as things come up?
I am desperate for some one in the same boat that I'm in to talk to. I am glad to hear that he's doing so well for so long,it gives me some comfort. I'll go for now. Please respond, anyone with some info on longterm living with it.

First, I am sorry to hear that you are so young. Even if islet cell is not as bad as so many cancer diagnoses, it still demands emotional energy and a watchful eye.

My husband's was diagnosed when he was 45 during surgery for what appeared to be suspicious colon cells. At that time they did a whipple procedure taking out part of his pancreas, stomach, colon, and spleen. It's curious--and worrisome-- to me that for yours, they did nothing during surgery with chemo/radiation as follow up. That is NOT the normal coarse of action. Do you trust both your doctor and your hospital?

If you are anywhere near Milwaukee, I would highly recommend Froedtert/Medical College of Wisconsin (Dr. William Rilling). That's where my husband's follow up has taken place for the last 7 years....very successfully, I might add. He has undergone a number of chemoemolizations, one therasphere treatment, two surgeries, and one cryoablation. No systemic chemo or radiation. Sounds like a lot, but remember, it's been over 7+ years. He looks and acts like nothing is wrong and he's now 17 (!) years older than you.

Did you know that Steve Jobs (Apple computer) was also diagnosed with pancreatic islet cell? I believe they resected his pancreas and he --for now-- is considered cured. (My husband's metastasized to the liver).

I hope that for now, that helps. Feel free to ask any other questions--general or specific. Best of luck.

I didn't answer some of your questions because I read the email string incorrectly. sorry.

Each time that my husband underwent a procedure it was preceeded by scans that showed that the cancer was growing. More often than not, we waited months and months before intervening. Sometimes they would do another scan just to see how much it had grown and to make sure that it wasn't somewhere else too. Treatments were usually scheduled when he became symptomatic enough to want treatment --both to stop the pain and hopefully stop the growth. The pain was never intolerable.

Thank you for answering so quickly. I think mostly they did nothing because the tumor is up against a large vessel and they didn't feel they could remove it safely. The chemo and radiation was to hopefully shrink it, so they could remove it. But, it didn't shrink it at the time. I am free of symptoms,but wonder if something needs to be done to keep me that way. After hearing from you I am considering getting a new opinion. At the time, I was seeing the best guy in town for this and he sent me to The Mayo clinic. After that I felt comfortable with thier expertise, Maybe it's timne to talk to some one else. Again, thank you so much for answering. So many people I have read about were able to have thier tumor removed or are undergoing some kind of maintenance. You really have helped me feel better. I hope to stay in touch,if that is o.k. with you.

Hi,
my name is Ken and I have been living with my cancer for almost six years now. I see my doctor from Fox Chase Cancer Center in Phila, Pa for check ups every three months.Most of the past years we have been doing the watchfull waiting thing.I have had two different treatments done in that time. One clinical study and the other chemoembolization of the right lobe of the liver. clinical study did nothing for me but the chemo to the liver has keep my main lesion (10 cm) in remission for almost two years. this past year the cancer has spread to my bones, right shoulder and left hip. Had radiation to both spots with good success. At this time my last ct has revealed few new small lesions in the right lobe of the liver.My doctor has suggested that watchfull waiting end and that I begin Chemo in a few months.Don't know what types or combination of drugs yet. Still a few tests before I begin. 7 1/2 years is great. Keep the faith and keep on living life to the fullest. May God bless !!!

How did you take the metastais to the bones? We've been told that is a common site for it to go to after the liver. I suppose it's good to be told what to expect, but every once in a while, I wonder. It's so easy to get suspicious every time there's unusual or unexplained pain.

Thanks for writing. I haven't completely figured out how this works. I get messages so rarely and then when I do, there's a string that I haven't been a part of.

Best of luck and life to you, Ken.

Are you on blood thinners?

I have a hard time believing that The Mayo Clinic wouldn't be one of the very best places around for treatment. It makes me think that--as usual--there's more to the story. The body is such an amazing but complicated system and a cancer diagnosis seems to change everything...including how your blood clots.

My husband went through a battery of tests to identify why he had clots (in the lung and legs). They needed to find out if it was "just" the cancer or if there were genetic reasons for clotting.

I need to be careful about getting out of the "information sharing/support" mode and talking about highly specific medical conditions.

I suppose what I feel most fortunate about is having a doctor whom I trust completely, who also is an articulate and caring person.

Stay strong. Try to stay relaxed and engaged in life. Don't be afraid to ask questions.

What were your syptoms when the cancer went to the bones?

In both cases the only symptom was pain in the jointd.In the shoulder I thought I pinched a nerve.I had just finished a remodeling job and felt I over worked my arm. Complained to my dr. at Fox Chase during a check-up and he sent me to have an x-ray where they found a lesion in the shoulder. Treatment(radiation) followed within a few days . Pain has been slowly going away and feels pretty good most of the time.Hip problem followed about a month latter with same treatment and success.

Hi there...I have malignant metastatic insulinoma (islet cell carcinoma). I see Dr. Yao at MD Anderson and I am starting hopefully the RAD001 study next week. I was diagnosed in aug 99, had 8 mos of chemo, the whipple etc surgery by dr. doug evans and dr. vouthey at MDA. Had a yr of remission, recurrence in the lymph nodes, temedor/thalidomide; carboplatinum, abraxane and avastin and now this new drug. Oh yes, I also went to the Netherlands 4 times for the LU-octreotate therapy which was very helpful. If you or anyone has any questions and wants to correspond,email me at
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taj brown