CancerCompass message board discussion started by susaninatl on 5/7/2008 http://www.cancercompass.com/message-board/message/all,23823,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband, aged 54, was diagnosed with stage IV kidney cancer in early November.  During the last 6 months I have never posted but have come to this forum over and over for hope, encouragement and ideas of how to deal with the side effects-emotional and physical.I'll tell our story briefly so the readers who are early in their journey can know a bit about us.  My husband's first symptom was a bone met in his jaw which flared up-we initially thought it was a dental problem and were shocked to learn after biopsy and CT scans that he had a huge kidney mass, mutiple bone and lung mets.    This disease killed his father soon after diagnosis in 2001.  We had worked in radiation therapy for 20 years and looked at those scans and completely lost hope. We did force ourselves-with the support of friends and family-to get two or more opinions on everything and search out experts in kidney cancer for opinions.  Although my husband was initially discouraged from pursuing a nephrectomy due to lack of supporting data, at Emory we were told there was some evidence it might be helpful.  He opted for a hand assisted laparoscopic and was walking a mile in a week-amazing.  He found an oncologist with expertise in kidney cancer and enrolled in a clinical trial for Trovax  (randomized-only a 50-50 chance he is getting the real thing-but still we thought worthwhile).  He just got results of his first CT's today after 3 months of Sutent-his lung mets are responding nicely-his bone mets  also responded a little and no new mets.  We know he will always be on chemo but our oncologist is very encouraging about the pipeline of new drugs.  We would all rather have a cure, but we know that its going to be a chronic disease for him, a marathon.   Dispite the side effects we are grateful for the drugs and treatment that are providing the gift of time, a decent quality of life and a future we thought was lost to us.We are only starting down this path but I'll give a little advice for others who are just dealing with a diagnosis.  You need emotional support during this process-this forum, the oncologist's counselor and the support of our friends and family have helped so much.  Seek kidney cancer specialists and do what they say-the treatments are today are improving constantly.  And we are lucky that the first treatments worked for my husband -but we know one day it won't-realize you may need other options. Thanks to all of you old soldiers and cancer angels who are helping the rest of us get through.  And good luck and prayers to those starting out.Susan in ATL  susaninatl Wed, 07 May 2008 00:00:00 GMT Thank you for posting your husband's good report.  Being diagnosed with kidney cancer is devastating, but thank goodness there are some options now.  I hope your postng does encourage someone who is new to this dreadful disease.  I am a one year survivor, have been on Sutent for a year.  I had a tumor on the clavicle which led to my diagnosis, both the kidney and the clavicle have been surgically removed,  there are no visible tumors at this time.  I am most grateful to have these treatments available. I am a believer in the power of prayer, I pray for wisdom and for peace to live my everyday life in light of having this disease.  Blessings, Robbie Robbie2 Wed, 07 May 2008 00:00:00 GMT Fantastic news and a great reward for your incredible courage. I am finding this message board a wonderful way to meet others going through similar experiences. I'm just completing my 4th sutent cycle for advanced kidney cancer. I had my primary cancer removed in 2003 but last August found I had secondary bone cancer in my left femur and clusters of tumours in my lungs. I had the femur tumour removed last September and when I was mobile again with a titanium femur and hip joint I started on the sutent treatment for the lung tumours. CT-scans are showing all tumours shrinking significantly and even if eventually the sutent stops working I'm learning of so many alternatives via this message board it is encouraging me to keep a very positive attitude.All the extra time this treatment buys is worth putting up with some of the unpleasant side effects. Keep living in the moment and enjoy the time life offers you.Keith   KeithRobert Sun, 18 May 2008 00:00:00 GMT