Hello Everyone,
My husband, Dave, was diagnosed with stage IV renal cell carcinoma last month. We were totally shocked as there were really no symptoms that anything was seriously wrong until just a couple of months prior to diagnosis, and then the symptoms were very vague. He started losing weight (30 pounds in about 2 months), but we thought it was just stress and didn't pay much attention to it. Then he got a horrible cough and had a chest x-ray followed by a CT scan, then we got the bad news.
The primary site appears to be his left kidney. There's a 10 cm x 10.5 cm mass in the left kidney and a very small, sub-centimeter mass in the right kidney. Both adrenal glands are affected. He also has severe metastasis to both lungs as well as the lymph nodes in the chest. A couple of the lymph nodes are nearly golf ball sized.
The oncologist told us that Dave is currently inoperable and that the treatment of choice is always to remove the affected kidney, but since Dave has such widespread metastasis that isn't an option at this time. So he started Dave on Torisel 25 mg weekly, and he just had his second treatment Monday. So far the worst side effect is that Dave has developed horrible sores in his mouth. He can't even eat anything unless it is very soft, and he's in agony even though the doctor prescribed mouthwash with lidocaine in it. He's using tons of Anbesol, Peridex mouth wash, and this prescription mouthwash.
Can anyone give us any hope? I've been reading the messages on this forum, and it looks like there are a few good success stories here. Has anyone else had the horrible metastasis to the lymph nodes in the chest? Does anyone know if these mouth sores will ever go away?
Thank you all so much for your answers. I am still just totally in shock. It's really amazing how much life can change in just one day. A month ago we were planning our summer vacation...now we've got this huge mountain to climb. The doctor said our situation is not totally hopeless, but he did tell us, frankly, that this would be like "turning around the Titanic." I just hope there will be some quality of life left in this situation. The mouth sores are making it pretty tough to have anything to look forward to. I am still in shock from all this. I spent the first week just totally in tears, but then I got a little composure and am stronger now, just trying to take one day at a time. My heart is broken into a million pieces, and my head is spinning. So many decisions to make. I just lost my Mom to pancreatic cancer a little over a year ago, and just like with Dave's case, no symptoms until it was too late. I thought nothing could be worse than losing my Mom like that, but I have to say, this is worse.
Thank you, and best wishes to everyone.
Nancy