Carcinoid Treatment

Hello

My Mom was diagnosed 2 years ago with Carcinoid. The primary seems to be in the lung ( never ever smoked) and has now gone into her liver.(Never drank with the exception of a Pina Colada on Christmas and New Years).  She went thru treatment with Cisplatin & Taxol and it seemed to help reduce the size of the tumors.  She has been told that surgeory was not an option.  After 9 months, she had to be taken off the chemo due to cardiomyapathy, a side effect from the two drugs. We went to a Carcinoid specialist in Tampa @ the Moffitt Center, Dr Kvoles.  He has recommeded Temidar and  Xeloda.  He is concerned that her insurance may not cover it because these drugs are said to be treatment for Brain Tumors and Melenoma.  Her insurance is Blue Cross Health Options.  Can anyone give me their thoughts.

 I look forward to hearing from you.

 Tami Cooper- Miami Florida

On 4/21/2008 TamiJanet wrote:

Hello

My Mom was diagnosed 2 years ago with Carcinoid. The primary seems to be in the lung ( never ever smoked) and has now gone into her liver.(Never drank with the exception of a Pina Colada on Christmas and New Years).  She went thru treatment with Cisplatin & Taxol and it seemed to help reduce the size of the tumors.  She has been told that surgeory was not an option.  After 9 months, she had to be taken off the chemo due to cardiomyapathy, a side effect from the two drugs. We went to a Carcinoid specialist in Tampa @ the Moffitt Center, Dr Kvoles.  He has recommeded Temidar and  Xeloda.  He is concerned that her insurance may not cover it because these drugs are said to be treatment for Brain Tumors and Melenoma.  Her insurance is Blue Cross Health Options.  Can anyone give me their thoughts.

 I look forward to hearing from you.

 Tami Cooper- Miami Florida

Tami, I have Blue Cross Blue Shield and have been on Xeloda for 6 months and they pay for it. Before that I was on Sutent and they also paid for that. I belong to a Carcinoid forum and several of the people there are on the chemo combo you listed and their insurance pays for it. There aren't any chemo drugs that are specific to Carcinoid so we take drugs that are for other cancers but will (hopefully) work on the Carcinoid and I've never heard of any insurance refusing to pay for it. Hope this helps you in going forward with her treatment.

~ Debby

On 4/21/2008 TamiJanet wrote:

Hello

My Mom was diagnosed 2 years ago with Carcinoid. The primary seems to be in the lung ( never ever smoked) and has now gone into her liver.(Never drank with the exception of a Pina Colada on Christmas and New Years).  She went thru treatment with Cisplatin & Taxol and it seemed to help reduce the size of the tumors.  She has been told that surgeory was not an option.  After 9 months, she had to be taken off the chemo due to cardiomyapathy, a side effect from the two drugs. We went to a Carcinoid specialist in Tampa @ the Moffitt Center, Dr Kvoles.  He has recommeded Temidar and  Xeloda.  He is concerned that her insurance may not cover it because these drugs are said to be treatment for Brain Tumors and Melenoma.  Her insurance is Blue Cross Health Options.  Can anyone give me their thoughts.

 I look forward to hearing from you.

 Tami Cooper- Miami Florida

Hi Tami, sorry to hear about your mother. Dr Kvoles is my husband doctor as well. A couple years ago we met him because of my husband liver cancer (carcinoid) that spread from his colon. He went thru many tests and Dr k saw  on one of his test results a shadow in his lung, he said never in my carrer would I bet that it was carcinoid? he said it's very rare to have it in the lungs..so he sent us home to another doc to have it checked out. Turned out it was an ifection, but my point is if your mom has carcinoid in her lung? she may be a one of a kind. Dr K is the world leading auth on this cancer. Why he would put your mom on those two other drugs I never heard of? and not LAR OR SAR (NEED TO ASK DR K ABOUT THESE) which is specific for carcinoid? We have BLUE CROSS BLUE SH and refused this drug, same issue that you're having. We had Dr K write a letter or phone them telling them my husband needs it. We also have a case working with blbs which helps allot.