On 6/10/2008
Heathers mom wrote:
On 5/15/2008
KathyCross wrote:
A couple of years ago, I was having symptoms of Cushing's Disease (puffy face, hair loss, upper body weight gain, high blood pressure). I had my Dr. check my cortisol hormone level and it was elevated. I was sent to an endocrinologist and after lab and urine tests, a CT was done which showed a 6 centimeter mass on my right adrenal gland. It was removed by surgery but 8 months later (Jan. 2007), a small tumor showed up on my liver. I had liver resection surgery. In November, 2007, during a re-check CT on my abdomen, the bottom of my right lung showed a small tumor. A CT of the chest then showed multiple "nodules" on both lungs. Dr's now consider this metasisized adrenal cancer and I have taken 5 rounds of chemo. This is a very rare form of cancer--only 200 cases in the US each year--literally 1 in a million. Apparently most adrenal tumors are benign. The pathology reports from both surgeries say the tumors appeared benign. Since tumors were later found in my liver and now my lungs, the Dr.'s say it is malignant even though the tumors appeared to be benign. I am doing great. God is taking care of me!
My 21 yrs old daughter is also recently diagnosed with adrenal cancer and she had her 12 cm tumor, adrenal gland, a bloodclot and her left kidney removed. We too were told there are nodules in both lungs. I am interested to know what form of chemo was done and how long 5 rounds of it took. Our reports have not come back benign and I am looking for hope. Please let me know that God is watching because my daughter needs a miracle.
I am sorry I have just now read your email. I would not have waiting so long to reply. The oncologist at Vanderbilt University in Nashville, TN (where I had the surgeries) recommended the chemo from a Mayo Clinic study he had read. I had 5 rounds of chemo (Cysplatin and Etoposide). I would go for chemo 3 days and off 3 weeks. The tumors on my lungs did not shrink; however, they did not grow according to my CT scans. (I took the chemo in Oak Ridge, TN, where I live, not at Vanderbilt). My Dr. suggested to take some time off the chemo. My CT scan a couple of weeks ago shows some small growth and small new tumors on my lungs. I am having no symptoms, however, the cortisol levels are up. My endricrinologist and oncologist recommended more chemo or taking the anti-adrenal/cancer drug "mitotane" which has the same side effects as chemo except no hair loss. I started the mitotane 3 days ago at a low dose. So far, no side effects. I am told this type of cancer is incurable. I still feel God is taking care of me because I realize he can do miracles. I will pray for your daughter. Please let me know how she is doing and what kind of treatment is being done. I will check this message board regularly. If you would like to contact me by phone, let me know and I will be glad to talk to you.