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My Michael

Posts: 1
Joined: Mar 2007

I am new to this board and I feel so lost and sad. My husband has been diagnosed with RCC and spread to his clavicle.
The news at the oncologist today was so upsetting to us both, I feel like I am living in a dream..........
Michael is 49,never sick, not one symptom, only a bump on his shoulder which we thought came from a fracture he received on a roller coaster ride???????????
I just don't understand this all, the doctor knew immediately looking at his MRI that it originated in his kidney.
He had the kidney removed and today the oncologist was not very encouraging.........
please, someone tell me there is hope for my husband...........I know about the new "miracle drugs" for RCC, but even with this the oncologist said his chances are not good.
Please help!
Thank you..........

Posts: 2
Joined: Mar 2007

I am living the same dream or should I say nightmare. My husband also was diagnosed with RCC and underwent surgery. Luckily we went for a second opinion and it saved his life. It sounds like you need a second opinion as well. There is always hope and no needs a doom and gloom oncologist.
Currently my husband is trying to gain back the 40 lbs he lost and is taking Sutent along with some homeopathic remedies. We will go for an MRI the end of May to see if his metastisized tumors have grown or stayed the same. We have hope that a new treatment will be out within the next year that will kill the tumors. This is something our doctors at Mayo clinic have been working on. Please get another opinion from someone who will give you some encouragement.
Best of luck to you and your husband. Climb aboard the emotional roller coaster and prepare for a bumpy ride.

Posts: 2
Joined: Feb 2007

I just finished my third cycle with sutent. I start the 4th cycle on the 27th. You mentioned that the Mayo Clinic was working on a new treatment. Can you give me any information on this. I would like to discuss it with my doctor at Duke.

poppie's picture
Posts: 2
Joined: Jul 2006

Hi Jessie my name is Jerry i had kidney cancer they removed my right kidney and some outher stuff went through treatments (there rough) but the good news is now 3 year surviver no cancer so NEVER GIVE UP HOPE there is allways a chance they call me poppie on the chat room

Posts: 2
Joined: Oct 2006

Hi!! Similar story. My husband had R kidney and adrenal gland and about 3" of his vena cava removed 4-17-01. He was cancer-free until May 06. That was FIVE YEARS!!) Metastized to L adrenal, pelvic lymph nodes, L thigh, and to the R hip bone and R femur. They thought at first (when only 2 spots had been found) that they'd do surgery... then when the other 3 areas were found they said no... so in Aug 06 he went on Sutent (an oral chemo-type treatment) 4 wks on and 2 wks off. After the 1st 2 cycles his tumors shrank an average of about 30%!!! After the next 2 cycles he had just slightly more shrinkage in some and stabilization in others. But in Jan 07 he began having serious side effects from the Sutent... nausea and loss of appetite played havoc with his diabetes... that plus dehydration had him in the hospital 4 times from Jan til now (May)... But once the Sutent was completely out of his system he began eating better (he had lost 75 lbs in 4 mos.) has now gained about 10 lbs back. Tomorrow he begins treatment with Avastin... It has not proven as effective as Sutent, but the side effects are usually much more tolerable. My husband had lots of other side effects from the Sutent, but the loss of appetite, nausea, and subsequent weight loss and dehydration were the ones that made it impossible for him to continue. The GOOD news is that, in 2007, there are several different drugs that help to prevent further growth of the tumors or spread of the cancer. Just a few years ago, there was basically NO hope for RCC patients. So, as devastating as this disease is, the advances in medical treatments give LOTS of hope for at least more time for our loved ones. So many of the people in the cancer chat rooms are 5year + RCC survivors... so there is DEFINITELY hope, especially with the new treatments!! God Bless!! Peggy from Michigan

Posts: 12
Joined: Aug 2004

I have been on Sutent for 3 years. I started out taking 50 mg. everyday. I had a lot of side effects. The worst being my feet hurt terribly. I stayed on that for about 6 months. Then we lowered it to 37.5 mg. a day. Some of the side effects went away. But I stayed with the sutent through all the pain and my lung tumor have shrank. Some are even gone.I read so much about how people start out on sutent then quit because of the side effects.No one ever told me it would be easy.Soure I hurt, don't move as fast as I used to and get tired but I keep on going.I have had a kidney taken out, had two brain tumors and still have some lung cancer. But I won't bow down to the pain and cry. I get up in the morning planning on having a good day. I am 56 years old and have been living with cancer for the past ten years. And I plan on living a long time.

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