adrenalcorticalcarcinoma

Hi, my brother has this adrenal gland cancer type called adrenal cortical carcinoma hope I'm spelling it right.  He had his first operation in 2007 and the doctor did it laposcopic at first ran into a problem the tumor was to big and my brother had said from the begining he wanted him to do it the old fashioned way by cutting him anyway during the operation he had to cut my brother the old fashioned way.  He was in surgery over 5 hours, then he came out saying he removed his adernal gland and that he had gotten the whole tumor out and he didn;t have cancer.  Then my brother went to have another scan some months later and they said it looked like cancer, he had to have another surgery.  They wanted him to even go back to the first surgern but my brother said no I want someone different.  October 2008 he had his second surgery, it was done the old fashioned way, cutting a huge cut, they removed the tumor, but he lost his kidney and the adernal gland from the first operation was not completly removed so he had to also finish removing the adernal gland.  They put him on a medication called Medatane(don't know if spelling is corret).  He had a scan done they said some things looked like something could be there, but the surgeon said it was from the surgery.  He had another scan 2 1/2 months after that and now the say their is a mass  around the surgery site and maybe something on the liver.  They are going to begin very strong chemo (3) chemos in one on Tuesday.  I am so scared, that it may not work for him does anyone know about any clinical trails  for adernal cancer.  I love my brother so much, I want to help him I wish he was told to do the chemo from the first operation, but they said he was cancer free and he had cancer.  Please help, Thanks

 

On 4/17/2009 RosieF. wrote:

Hi, my brother has this adrenal gland cancer type called adrenal cortical carcinoma hope I'm spelling it right.  He had his first operation in 2007 and the doctor did it laposcopic at first ran into a problem the tumor was to big and my brother had said from the begining he wanted him to do it the old fashioned way by cutting him anyway during the operation he had to cut my brother the old fashioned way.  He was in surgery over 5 hours, then he came out saying he removed his adernal gland and that he had gotten the whole tumor out and he didn;t have cancer.  Then my brother went to have another scan some months later and they said it looked like cancer, he had to have another surgery.  They wanted him to even go back to the first surgern but my brother said no I want someone different.  October 2008 he had his second surgery, it was done the old fashioned way, cutting a huge cut, they removed the tumor, but he lost his kidney and the adernal gland from the first operation was not completly removed so he had to also finish removing the adernal gland.  They put him on a medication called Medatane(don't know if spelling is corret).  He had a scan done they said some things looked like something could be there, but the surgeon said it was from the surgery.  He had another scan 2 1/2 months after that and now the say their is a mass  around the surgery site and maybe something on the liver.  They are going to begin very strong chemo (3) chemos in one on Tuesday.  I am so scared, that it may not work for him does anyone know about any clinical trails  for adernal cancer.  I love my brother so much, I want to help him I wish he was told to do the chemo from the first operation, but they said he was cancer free and he had cancer.  Please help, Thanks

Have you heard of PRRT (peptide receptor radionuclide therapy) ? It is done in Switzerland for rare types of neuroendocrine cancer. Your brother may benefit from this therapy.

 

 

On 4/17/2009 RosieF. wrote:

Hi, my brother has this adrenal gland cancer type called adrenal cortical carcinoma hope I'm spelling it right.  He had his first operation in 2007 and the doctor did it laposcopic at first ran into a problem the tumor was to big and my brother had said from the begining he wanted him to do it the old fashioned way by cutting him anyway during the operation he had to cut my brother the old fashioned way.  He was in surgery over 5 hours, then he came out saying he removed his adernal gland and that he had gotten the whole tumor out and he didn;t have cancer.  Then my brother went to have another scan some months later and they said it looked like cancer, he had to have another surgery.  They wanted him to even go back to the first surgern but my brother said no I want someone different.  October 2008 he had his second surgery, it was done the old fashioned way, cutting a huge cut, they removed the tumor, but he lost his kidney and the adernal gland from the first operation was not completly removed so he had to also finish removing the adernal gland.  They put him on a medication called Medatane(don't know if spelling is corret).  He had a scan done they said some things looked like something could be there, but the surgeon said it was from the surgery.  He had another scan 2 1/2 months after that and now the say their is a mass  around the surgery site and maybe something on the liver.  They are going to begin very strong chemo (3) chemos in one on Tuesday.  I am so scared, that it may not work for him does anyone know about any clinical trails  for adernal cancer.  I love my brother so much, I want to help him I wish he was told to do the chemo from the first operation, but they said he was cancer free and he had cancer.  Please help, Thanks

Yes, there is a clinical trial starting soon at the James Cancer Center at Ohio State University in Columbus, OH.  Dr. Manisha Shah will be heading it up and I have seen her twice.  She can be reached at 614-293-8629.  Her nurse practictioner, Daria Arbogast's number is 614-293-3818.  They hope to have the clinical trial Phase 2 starting in June.  I have had my adrenal gland removed and a liver resection.  It has now spread to my lungs and again in my liver.  I am taking the Mitotane, but the tumors are still growing (slowly).  The Doctors here in Oak Ridge, TN  want me to do more chemo, but I am waiting for the clinical trial.  This cancer is so rare that the Dr.'s here are not sure what to do.  I feel really good about Dr. Shah at Ohio State.  Please have him contact her.

Thank you so much, I will tell my brother about this. I really appreciate it.Take  Care.

I would like to say thank you so much for this information, I will pass this info to my brother and his wife.  I really appreciate it, he has just finished his second round of intense chemo this Friday and they want to do a Pet Scan again in the beginning of June.  Fingers crossed for hope.  I hope all will go well with you also. Again thank you.

 

Rosie