Frank W

Dr. Francis Wang

Dr. Francis Wang passed away in October, 2005

Frank’s Story

I am Frank from Northern Alabama and I have joined the group only recently. I have Carcinoid of thymus, a different kind of cancer of thymus than thymona or thymic carcinoma. I had surgery Dec. 1996 to remove the tumor, which was already invaded the lung and pericardinal at that time. The surgery could not remove all the microscopic tumor cells and the tumor showed up around the aortic arch about two years later. I had used Xeloda oral tablets about three years ago, but it did not seem to do much. After that, I had tried several other treatments including the standard chemotherapy of Carboplatin/VP-16 (etoposide) combination. It showed good effect the first two cycles with tumor size reduction at close to 60%. But the treatment was just too much for me and the positive effect went away after the initial two cycles. We had to stop this treatment after six cycles.

Since carcinoid is relatively slow growing but it effects hormone production, I have been put on a special combination treatment using Sandostatin (Octreotide analogy) shots and low does (so called scheduled) chemotherapy. This is recommended by a Dr. Warner, the Medical Director of the Carcinoid Caner Foundation.

I know thymic tumors are rare. And among the few medical reports I have read, it seems that there is no general treatment plan available. However, carcinoid of thymus is even rarer. I have visited Mayo Clinic in 1997 and MD Anderson in 1998. At both places, I was told by the oncologists that they did not have much experience in medical management of this kind of tumors. Most successful cases were those related to early detection and were treated with complete surgical removal of tumors. For us tymic tumor patients, this is kind of hard to swallow. However, we must try all possible avenues to deal with the situation. I would like to hear any good news about successful treatments and available new approaches to treat this extremely rare cancer.

I am happy to hear about your success story. Good luck.

Frank in Northern Alabama.
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Update

I have been back to my previous treatment plan lately. I had a ct-scan in October, which did not show much change from July scan. Since I felt more pain and pressure in my chest area, my doctor suggested that we resume the treatment while thinking about whether to go visit one of the Carcinoid Specialists (listed in the Carcinoid Cancer Foundation website) for consultation. It appears that the majority of treatment options for carcinoid tumors are quite different from those for more common cancers. I have been wondering what are the opinions of the specialists in the thymic cancer society on the treatment of thymic carcinoid. I have looked at both the more aggressive chemo treatments similar to those for thymoma and lung cancers, and also those with the slower low-dose chemo plus hormone treatment which I am currently on. But, none is effective in eliminating the tumors. It seems that thymic tumors are very stubborn, and the more aggressive treatments can only knock out the tumor for a short period of time, and before long, these tumors are back again. My current treatment is aimed for maintenance, and I think this is probably the best I can hope for, until some new treatment becomes available.

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