our story
Good morning everyone, I am a caregiver for my husband Steve. He has renal cell carcinoma, for 11 last years! For the last 7 years he has been stage 4. He has been on the drug Sutent for the last 3 years. He lost one kidney in 1998 and now has mets in the remaining kidney. Our doctor (notice how I say we) says that he is the longest patient at CMC in Charlotte NC to be on the drug Sutent. I want to join this forum to give hope to those who suffer with this enemy (cancer). It is a journey that we share together. You can learn to live with kidney cancer and I would be willing to share our story with those who need encouragement. Steve leaves the talking about cancer to me, he does the fighting. For now, I hope that all of you have having a good day, Remember that is all you can do. One day at a time. Thats all thats required of you, just get thru this day. God is the center of our lives. He will take care of tomorrow. May God bless each of you. Wanda
Replies
Hi Wanda,
Welcome to the group. i am also a caregiver to my fiance who was d/x Aug 08 and had his nephrectomy in Nov 08... He has been on treatment with Torisel, it\'ll be a year jan 11th and has done well, all lung tumor and nodules and bone met have been stable all this time, i am pleased to say...I am here if you ever want to talk anytime... I also want to add you as a friend...
Again welcome to the rcc group, you\'ll find alot of new friends here, like your self i do all the talking and both Tim and i do the fighting togeather !!
Becca
Hi Beccanne, It will be so nice to talk to someone who is going thru the same thing. Steve is on another cycle and this is the 2nd week. Next week he will lose his taste and his feet will get sore. I have tried EVERYTHING on his feet but that is the one constant, sore feet, often so bad he can barely walk. He has under the skin blisters. His feet will turn orange colored on the sides. His taste is gone also. He is always looking for something he can taste. He has learned that by spicing everthing he can taste somewhat. I am so glad that he will try to eat. He is a sweet lover so he will try those. How about your fiance? My husband is a big guy. He is 6 feet tall and has always be stocky. He had no health issues until this presented in 1998. I will write more later today. I am so glad that I found this site. I hope to gain comfort and give hope to others. I am a reglious person and we find comfort in Gods word. Have a wonderful day.
How our story began: My husband who had been feeling like he was getting a kidney stone told me to make him an appointment with our urologist. He was at work and I was off that day when he called me from the emergency room and told me that he was urinating when the flow started with pure blood and then stopped. I had been outside mowing grass so I had to get a bath, I took my time thinking they would give him a pain killer and I would just bring him home, as I had many times before when he would get a stone. When I got there he was in no pain, which is very unusual for a kidney stone. The doctor ordered an untra sound and we waited for the news. He came in and told us that he had a large mass on his left kidney and he was almost certain he had kidney cancer. Of course we started crying and thinking the worst. In a few days he was having the kidney out and told he had a 20% chance of it coming back. No treatment back then, just cut it out and hope it never came back. He did great for 3 1/2 years and was scanned every 6 months. It was just after Christmas when the scan showed it was in his lungs and his thyroid. That was removed by lung resection and having the thyroid remeoved. We are going to onocologist every 3 months now, making plans between scans for living the best life we could. Planning trips and vacations to our \"want to do list\" places. then it came back to the remaining kidney. (we are down to 1/2 of working kidney). And to the pancreas. He started on sutent 3 years ago and the tumor on the pancrease does not measure anymore. PRAISE GOD!!!! So now our lives are planned by one cycle of Sutent at a time. He is great, strong, and coping with this disease-sometimes better than I do. He is a warrior in the greatest sense of the word. That is how he sees it. Something trying to overtake his body and he is in the fight of his life. I fight along with him, when he is feeling out of sorts from the chemotherapy I let the hurtful words go, I know he doesn\'t mean it. You learn to give, give and give. I know he loves me more than anything and I love him the same. Cancer is an awful disease, it try\'s to take away your sprit and you just can\'t give in!! I didn\'t mean to get so long on my post, just wanted you to know that there are people who are making it with kidney cancer and living quality lives. Till next time Wanda
hi wanda,
i am so inspired by your story. your love for each other made both of you fight cancer so well.
i am new to this site and would just like to know if what was the cancer stage of your husband when his kidney was removed. i hope you don\'t mind.
my husband is 46 years old. we just get married 5 years ago and still not blessed with a child. he has stage 2 cancer 7cm tumor on his right kidney. he was operated last october 23, 2009.
my husband strongly believed that the urologist get all the cancer but base on what i have read from the journals of other cancer survivors it is not always the case. cancer always comes back.
i really hope that my husband\'s cancer will take longer time or will not come back. i wanted that we will have our own child and start a happy family.
thanks for reading this post.
liezl
Hi Liezl, I believe that when he was dianosed it was stage 2 and completely enclosed inside the kidney. I remember the doctor telling us it was the size of a grapefruit and probably had been growing for a long time. It happened at a time when he had to have a big incision. I think now they do it microscopic without that large incision. I believe that because he left the adrenal gland on that kidney intact that is the reason it came back. Who knows why it comes back in some people and doesnt\'s in others.( I can\'t spell worth a flip in my old age) Just try to give it up to God. You can\'t add an hour to your life by worrying. Believe me I am the queen of worry. That has been a hard thing to do for me, but TRY to just give yourself some peace by trusting that God will take care of you and you will not leave this world until your appointed time. I pray God will give you that peace. Until next time, Wanda
Dear Wanda
thank you so much for sharing your story. It\'s so wonderful to hear of someone surviving so long, especially with stage iv, as my partner has too. We had a lot of dire prognoses from our original consultant back in July (now changed) and I wish that doctors like him would open their ears more to stories like yours. Unfortunately Sutent didn\'t work for my D, and we\'re playing a waiting game now to see if he can get onto a trial to try something else (here in the UK, only Sutent is approved on the NHS)
Thanks again, and I hope you\'re having a lovely day, today.
Meriel
Dear Wanda
thank you so much for sharing your story. It\'s so wonderful to hear of someone surviving so long, especially with stage iv, as my partner has too. We had a lot of dire prognoses from our original consultant back in July (now changed) and I wish that doctors like him would open their ears more to stories like yours. Unfortunately Sutent didn\'t work for my D, and we\'re playing a waiting game now to see if he can get onto a trial to try something else (here in the UK, only Sutent is approved on the NHS)
Thanks again, and I hope you\'re having a lovely day, today.
Meriel
We are on the 3rd week of Sutent. This is his 24th round. It\'s hard to believe it\'s been that long. He has almost lost his taste. And his feet will begin to hurt soon. It\'s better in the winter, because he\'s not on them so much. He has adjusted his life to taking Sutent or \"something\" for as long as the Lord will let him live. He is very strong and I love him and admire him for his courage. God bless all of you who battle.
Dear Wanda,
How wonderful to find an mRCC cancer survivor longer than my husband. My husband was dx and lost his kidney in 2002, so we will be celebrating 8 years survival in just a couple of months. I can relate to your story in so many ways. There wasn\'t much out there back in 2002 and so it took a few years to pass before promising meds came our way. At present, my husband is circling a 2nd time on Nexavar and having pretty good results. Thank you so much for sharing your positive and hopeful story with us.
Love,
Linda
Hey Linda, I hope you and your husband are having a good day. We are doing just fine today. It is so much easier in the winter on Sutent than in the summer. He can lay around in pjs and get dressed when he wants. He is a sports person so he watches a lot of games. He LOVES his computer and reads all the time about the newest gadgets. Where are you located? We are near Charlotte N.C. about 50 miles away. I believe the longer our husbands can hang on the more research can be done to improve treatment. Would it not be wonderful if a cure could be found!! In the meantime we will thank God for each day. I lost my brother to bladder cancer about 5 years ago and my baby sister (53) is in the battle of her life fighting breast cancer. Her name is Recca and she is having a mastectomy on the 18 of this month. I know she could use your prayers. Thanks for listening to me, it helps to talk to someone, doesn\'t it? Hope we can talk again soon.
Wanda