CancerCompass message board discussion started by Daddy's Girl on 11/5/2002 http://www.cancercompass.com/message-board/message/all,617,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My name is Vinnie B. and my father is suffering from metastatic Renal Cell Carcinoma. I decided that there is only one way to make sure that more people don't have to go through what my father is going through and that is knowledge. Knowledge is power. I am interested in bringing attention to the fact that it is 100% curable if it is caught before it spreads. My father had the same symptoms for 5 years and it was diagnosed as something else. Unfortunately, it wasn't until he was literally completely unable to move that we insisted that the 3rd ER visit become a hospital admission. The next day they found the tumor in his spine that had crushed his vertebrae and the huge tumor in his kidney. So, I have sent letters to TV stations in my locale. I have sent letters to all the talk shows (Oprah, Montel, Today Show, Good Morning America, etc.) I just want somebody to talk about this disease. The world needs to be informed as to the fact that there are other dangerous cancers out there besides breast cancer and lung cancer. Is anybody able to join me to do the same where you live. If enough of us keep talking loud, somebody will listen. Thanks for your time. Daddy's Girl Tue, 05 Nov 2002 00:00:00 GMT Vinnie, I'm so sorry to hear about your father. Something similar happened to me, except mine is the rarest cancer yet: Adrenal Cancer. Yes, I agree with you, knowledge is power and more people need to be aware of Cushing's Syndrome and Adrenal Carcinoma. The way my tumor (size of a fist - 13 cm) was discovered after numerous complaints was when I developed Cushing's Syndrome. Not a known disease either. To make a long story short - I'm now battling cancer (stage 4), but doing better than ever, thanks to my Lord, nutrition, and herbs. I would like to participate, but don't know how, since I'm currently on chemo, which has me a little on a tired stage. Let me know what needs to be done....and if I can, with the Lord's help, I will. God bless, Aura Aura R. Tue, 05 Nov 2002 00:00:00 GMT Aura, bless your heart. First, I want you to know that I will give your name to my father, Pastor H. Buxton. Prayer changes things. I am sorry to hear about you, too. I will be doing some research to learn more about Adrenal Carcinoma. Well, the first thing that you can do is know that you are a voice to be heard. You can do a lot from your computer. Go to the websites of the local television stations and email them, as well as the talk shows that I previously mentioned. What I'm thinking is that if they begin to get enough correspondences about this, they'll know that we are determined to help save the lives of others. I get so sad sometimes because I feel that this cancer is bigger than me. I feel so defeated sometimes, but I refuse to give way to that. I am determined to fight this along with my father and bring it out of the dark so that one day people are talking about it like they talk about breast cancer and lung cancer, etc. When you email those that I mentioned, you want to tell them that you are interested in bringing awareness to kidney cancer. In every letter, I have mentioned that it (Renal Cell Carcinoma) is 100% curable if it is caught before it metastasizes or spreads. I also mention that each year 28,000 people are diagnosed with it. I tell them that there are other dangerous cancers out there and that they, too, need to be recognized by people in the hopes of being detected early enough to survive it in the end. Trust me, if you are passionate about it, your fingers will do the talking, so to speak. If you prefer, you can give me the names of the TV stations via email and I will email them. It's up to you. Let's work together to put a stop to this. I look forward to hearing from you. Daddy's Girl Tue, 05 Nov 2002 00:00:00 GMT Aura, I have not heard from you. I hope that all is well. You are in my prayers. Are you still interested in working with me from your computer to bring awareness to this disease? If not, my continued prayers are with you. Please pray for my father. After 5 months, the doctors have told me that there is nothing they can do further for him. They are not expecting him to live a month. I will definitely do all that I can to bring awareness to this terrible disease....even if I have to do it alone. God Bless, Vinnie Daddy's Girl Mon, 25 Nov 2002 00:00:00 GMT Dearest Vinnie, Before anything, please forgive me for not writing to you promptly. But, unfortunately I was having 'computer problems', which inabled me to get into the internet. I'm so sorry to hear about your father. Believe me I've had you and your father in my heart and prayers. Hope all is well with you. As for your father, well, all I can say that if his time has come, we must rejoice (easier said than done...I know) that he'll be with our Heavenly Father and way better off than all of us. Just imagine...God awaiting for him at the 'pearly gates'. Beautiful, huh? As for the channels here in Calif, I haven't been able to jot them down since I've been busy with my children and doctor appointments. But when I get a chance, I'll definitely send it to you. Also, have you ever heard of Larry B.? He's a financial counselor of Crown Ministries. He's a survivor of "Renal Cell Carinoma' and has a book out called "Damaged...But not Broken". When he was finally diagnosed with the cancer, he was only given less than two years (at the most)...it's been eight years now. I believe he tried alternative therapies, such as, IV of vitamins, natural herbs, and a recent operation, which wasn't invasive. I suggest, if you can, that you get in touch with him. God bless you and I'll be praying for both of you and all your family. Aura Aura R. Thu, 19 Dec 2002 00:00:00 GMT Vinnie - please join this mailing list and you may find out that there is still hope for your Dad in spite of what the doctors are telling you. The list contains more than 600 members - mostly those with renal cell carcinoma, some caregivers as well. Many are survivors after being told there was no hope. http://cancerguide.org/kofaq/. Linda G. Sun, 29 Dec 2002 00:00:00 GMT My friend I have the same thing. When I was first diagnosed I was already terminal It had already spread to my lungs and other outlying organs. I also have contacted the media in reference to this cancer but as with you with no luck at all. It seems to me to be a type of cancer they just want to sweep under the rug. Thanx george M. Wed, 29 Oct 2003 00:00:00 GMT Vinny, My dad also has renal cell carcinoma. He has taken Interleukin-2, which has brought him to just skin and bones. My prayers are with you and your father. When my dad was originally diagonosed, they were able to remove the tumor with surgery and his doctors told him he was cured. Unfortunately, they must have missed something because two years later the cancer came back. He is currently taking the Interferon-Alpha. It hard for me to watch him waste away like he has been doing. But he is such a fighter, he refuses to give up. If you ever need to talk feel free to contact me. Once again, my prayers are with you and your father. My heart goes out to both of you. Jennifer R. Sat, 01 Nov 2003 00:00:00 GMT Well, I am sad to say that my father passed away on January 15, 2003. The cancer was very aggressive and it had spread to his lungs, brain, again in his kidney area, bones, and entire abdominal cavity. But, I am not writing to bring sad news. My father, Rev. Henry Buxton, was able to touch so many lives, especially during the illness. I recall when the oncologist walked into the room and told us that he couldn't help my father any further. He cried and my father took his hand and thanked him for his perseverance and dedication to his case. My father wanted to continue preaching more than ever. He couldn't walk and move around on his own, but with the help of an electric wheelchair and me and my mother lifting him, he was able to go to church every Sunday and bring the Word of God. He passed away on Wednesday, Jan 15 and he was at church the Sunday before preaching and teaching from his wheelchair. He knew that it was time and he resigned from pastoring after service and told the members that he loved them and to continue to love the Lord. My mother brought him home and he wanted to lie down early due to pain and exhaution. He talked to me on Monday morning and that was the last I heard from him. He told me that he loved me and that he truly appreciated all of my love and help during the six months of his illness. He smiled and laughed for a moment and I told him that it was okay to let go. Dad passed away the next day. Before doing so, he brought my family back together. He showed us how to love again and how to appreciate every moment that we have together. I flew my dad here for his final resting place and I visit him every week. He is at peace and he is resting. The cancer lost. It can no longer hurt him because God took him Home. There are many who will survive this same cancer. There are some who will not, but for those of us still living, let's just live. Live with love. Live with peace, and most of all, live with God. My father didn't want me to curl up and give up. So, I am in nursing school and I am taking care of my mother and my 15 year old son. I smile every day just looking at his picture because I see a man that is free from pain. God Bless you all, Vinnie B. Daddy's Girl Mon, 03 Nov 2003 00:00:00 GMT George, I am sorry to hear of your diagnosis. You are right, the media is of no assistance. It's almost like they don't care. I want to tell you to enjoy life. Do the things you want to do and see the people who bring you joy. I will be praying for you. My father passed away in Jan 2003. But, his memory still lives on in my heart. Sincerely, Vinnie B. Daddy's Girl Mon, 03 Nov 2003 00:00:00 GMT Jennifer, Hi, and thanks for the reply. My father passed away on Jan 15, 2003. He lived for only 6 months. I know what you mean about how hard it is to watch him be so sick with such a vicious disease. I don't know how long your dad has been sick this go round with this cancer, but just make sure to tell him you love him. My dad and I lived in different states; me in NJ and he in Florida. So, I would go to Florida each time he was admitted to the hospital, which was about every 3 weeks or so. In the end, he couldn't do much of anything on his own. I did get him an electric wheelchair because he couldn't use the regular wheelchair. He was too weak and his muscles were gone, pretty much. But, we laughed and shared stories about our lives that were funny. We hugged. I would watch him sleep and lock that peaceful memory in my mind. Now, it's been about 10 months and it has been the hardest time of my life. But, my dad made me promise to finish nursing school and not curl up and wither. I have kept my word, although it has been hard. I am here if you need anyone to talk to. Sincerely, Vinnie B. Daddy's Girl Mon, 03 Nov 2003 00:00:00 GMT I am 61 years old and have renal cell carcinoma. I had the right kidney removed in June 2000. Two years later it showed up in the left kidney and in the pancreas. I tried clinical trial using Interleukin-2 and Thalidomide for 8 weeks. My c-scan showed no shrinkage in the tumors and in fact another one has shown up in the adrenal gland. I will probably try another treatment using Interferon. This has been a battle for 3 years, and I have always wondered why I've never heard anything about this kind of cancer on any talk shows or news programs. I agree that information should be out there. I think that the percentage of people with renal cell carcinorma is so small compared to breast & colon cancers that it just isn't newsworthy! Janet F. Sat, 08 Nov 2003 00:00:00 GMT I am sorry to hear of your having to deal with this awful disease. Unfortunately, my father died from it on January 15, 2003. I promised him that I would share his story with as many people as I could, so that they may have the tools necessary to make the doctors keep looking for something that makes sens. You are in my prayers. Sincerely, Vinni B. Daddy's Girl Sun, 09 Nov 2003 00:00:00 GMT I have just been diagnosed with Renal Cell Carcinoma and Prostate Cancer. I am due to have an MRI and a bone scan this coming week to find out if the cancer has spread. My wife and I are trying to come to grips with all that has to be done. If anyone has any suggestions, tips, etc., please feel free to pass them along. The hardest part was telling my grown children, who, until now thought I was invincible. But, I'm a fighter and will not give up esily. Thanks for listening, Bill Bill M. Sat, 03 Jan 2004 00:00:00 GMT Well, while there may be more people with other types of cancers, that does not mean that renal cell carcinoma is not news worthy! People are dying from it every day. January 15, 2004 will be one year since my father died of it. As long as people are dying from it, people should be informed about it!! Daddy's Girl Sat, 03 Jan 2004 00:00:00 GMT Vinnie, Can you tell me how it was for your dad when it came to the organs failing? My husband has been treated for Renal cell carcinoma that went to the liver, lung, bones, and brain, and limp nodes. He took Intron-A and became sick with infection which the Oncologist would NOT treat and I finally took him to a Urologist that just kept catherizing him and telling him as long as he was on the treatment it would be this way for him. I finally to him to the emergency room at the hospital and they found the infection had gone into the the bladder, kidney, testicles, and tubes there of. He spent over three weeks in the hospital on several antibiotics and now is home trying to recoup from it all. I would like to know what to expect when the time comes when he can't fight this off anymore. I know you can't say what may be Ron's demize but if I had some idea what to look for I would have a better feeling on how to care for him. I don't think his cancer is bad enough to hurt him as of yet but the infection almost took him which could/should have been addressed since I was asking all who treated him to please test him and no one would till I took him in to the hospital. Ron has not been sick but the treatment from the radiation and Intron-a has done so much to him that he is struggling to exercise and build strength. I nag at him to keep going and push him to get stronger but I worry that I am trying and there might not be time for him to enjoy what time he has left. If you could give me some insight I would greatly appreciate it. Pat R. Tue, 06 Jan 2004 00:00:00 GMT Pat, This is difficult to share for several reasons. First of all, next Friday is the one year anniversary of my dad's passing. Pat, living without my dad is the hardest thing I've ever had to do and I am 38 years old. But, one thing that prepared my mother and I was knowledge of what to expect. So, for that reason, I will share in the hopes that it helps you somehow. First of all, my dad only lived for 6 months after diagnosis. They tried Interlukin II with him and he had too many adverse side effects. So, he had to discontinue that after only two treatments. He was a preacher and he had faith like you wouldn't believe. His tumor was initially found in his spine and the next day a CT revealed the spot of origin was one of his kidneys. It was already in stage 4. After seven weeks in the hospital, one week later they found it on his brain and another spot in his spine as well as kidney. The next place it spread to was his lungs and his bones. Lastly, his entire abdomen was cancer riddled. He was 6'5" tall and he went from using a walker to using an electric wheelchair. That lasted for a couple of months. As I said, he passed on Wednesday, Jan 15, 2003. The Sunday prior, he went to church even though he could only move his hands, pretty much. He couldn't move his own legs. We would literally place him in his chair and he preached his last sermon from his wheelchair and then resigned from the church as pastor. My parents had tickets to fly here to NJ where I am because we knew it was near the end. He told my mother that Sunday that he wouldn't make the trip on Friday. Once he went to bed that afternoon at 4pm he stayed there until his demise. The next Monday, we couldn't wake him for about an hour and we called hospice. He finally woke up and said that he could hear everything, but he just couldn't wake up. He said that he was dying, that his body was changing. He stayed awake for a couple of hours more and then started pulling at the sheets and while he was awake, he wouldn't respond to my mom's voice. He started calling for his mother who had died when he was a child. He hadn't urinated in 24 hours due to his kidneys failing all of a sudden. He was confused because of the brain tumor. We think he threw a clot to the lungs. His breathing was very irregular. For instance, he would go 30-40 sec without breathing. This lasted from Tuesday morning until he finally passed 535 am on Wednesday. He passed in his sleep just like he said he would. Please find a way to prepare yourself. If you have any further questions, feel free to send me a message. Sincerely, Vinnie B Daddy's Girl Tue, 06 Jan 2004 00:00:00 GMT My name is Wanda and I live in Texas. In April 2002 I found out that I had renal cell carcinoma. My doctor referred me to a doctor in Dallas. On June 27, 2002, I was admitted to the hospital for a new surgical procedure that was only 2 years old. I believe my tumor was a stage 2 and was about 2.5cm in size and it had not invaded any other part of my body at that time.(PRAISE THE LORD). I still have both kidneys and I keep my appts. with my doctor every six months and as of 2/04 the tumor has been shrinking and almost gone. I did not have any chemo or radiation treatments after the procedure. Not all kidney cancers are the same, so what works for one might not work for the other. Vinnie, I am sorry to hear that your dad passed away so soon. My mom also had this disease. But she was not able to have surgery because the tumor was wrapped around the kidney and was close to a delicate vein that went to her heart. She found out about it in July 1997 and she lived until March 1999. She was a great Christian mother and I miss her now, but one day I will be with her, as you will with your dad. Also would you please keep my husband in your prayers. We just found out on June 11, 2004 that he has lung cancer. He is only 57 yrs old, smoked since he was about 20 yrs old, 2-3 packs a day. He also has emphysema, is bipolar and is on oxygen 24/7, so surgery is out. He starts radiation on Monday (6-28-2004). We are both Christians and we put our faith in our Lord Jesus Christ. Love Wanda Catsmeow Sat, 26 Jun 2004 00:00:00 GMT Dear all, I have just been aware of this message board and I feel better as I found people who are aware how of this terrible disease. My sister had a diagnosis of RCC 7 months ago. Stage 4/4. Lung metastatic. Fortunately, there are no metastases yet in bones or brain. She had so many chemotherapies (Gemzar+5FU for 8 weeks), xeloda+gemzar (progress after this!) doxrobucine as single agent. Chemotherapy did not show any remarkable result. In January 05 she started 5 FU+INTERFERON A. It only kept tumor stable. No shrinkage! She is now (since February) taking IL-2 (SUBCUTANEOUS INJECTION) 6 M?LL?ON IU and INTERFERON A 3 millio IU per day. Can anybody tell me, 1-) if anybody had a good result of this way of treatment? I am asking especially SUBCUTANEOUS INJECTION treatment of IL2 ? 2-) if anybody have ever had combination treatment of IL 2+ INTERFERON + AVASTIN?? Our doctor will include AVASTIN to IL2 + INTERFERON . But I am not so sure about this 3 agent combination . Maybe it is better to use Avastin + Tarceva after IL2 + interferon A for maintenance . Thank you all for your messages in advance Love and best wishes from Istanbul ... Deniz Deniz Tue, 08 Mar 2005 00:00:00 GMT Dear Deniz, See http://cancerguide.org/kidney.html for mnore information about renal cell carcinoma, http://kidneycancertrials.org/ for information about clinical trials for RCC, and http://cancerguide.org/kofaq/ to join a kidney cancer email support list that is very active--you can get your questions answered there. Trishpm Tue, 08 Mar 2005 00:00:00 GMT Vinnie B, I was touched by your story of your Father so... My dear friend has renal carsenoma. stage 4, was diagnosed about 6 months ago. I have only had the pleasure of knowing her for a very short time (couple of months)but feel like we are best of friends...I was asked to help care for her in the evenings as her cancer had worsened. but my mother took ill & I called away & was was there for about a month. When I returned, she has really taken a down-hill. They say maybe 3 months. She is halucinating, doesn't talk well, shaky, & has to be helped for every movement. As a person who has fallen in love with this dear sister-in-Christ, what can I do to help her & the family? I see her now & she barely knows us!!! How can this cancer be so fast spreading & such little information out there about it? Maybe I have just been in such denial that this was so aggressive! She is a Christian & has been making her peace, and that in istself is easier for all to let her go! As with your father, who was close to the LORD, they know where they are going!! I just pray for her comfort & painless journey now! At the stage she is in, with very little movement & her outbursts at times.....is she closer than the Doctor's are stating perhaps? Thanks for any info you may have! MsKim Mskim Sat, 02 Apr 2005 00:00:00 GMT My heart goes out to your friend, her family, and to you. It is very difficult to watch someone you love or care about dwindle to this person that you don't recognize. If I were you, I would find a way to come to terms with the fact that the end may very well be near. My father didn't suffer like that until the last 36 hours or so. He was awake, but didn't recognize my mother or my brother. I wasn't able to get there in time, but he recognized none of us. If your friend is still here, just find time to hold her hand and be there. If there is any chance that she is beneath all that confusion and unusual behavior, maybe she will know that you are there with her. My dad told me that he would always be in my background. His birthday was April 17 and its now been over 2 years. My heart aches for him and I just make it a point to live life to the fullest, as I promised him. He is remembered and his memory motivates me to go on even more. I am a nursing student and one of my patients actually had the same cancer, renal cell carcinoma. I was able to talk to this patient for only about 6 hours while I cared for her. She is strong and determined to enjoy her life. Her cancer is in stage 4 and she has opted not to have any radiation. She said that she didn't know about the cancer until she had an xray for another reason. She said that she is ready to "go home with the Lord." She is only in her 50's, just like my dad. So, to answer your question, you have already done all that you can. You are there for her and a true friend. No one could ask for more. God Bless You! Vinnie Daddy's Girl Sun, 24 Apr 2005 00:00:00 GMT I want to help fight kidney cancer. I'm sorry about your father. My husband who was 35 just died last week. It was and is pure hell for me and our 2 kids who both just had birthdays this summer. My husband was just diagnosed June 6th and was immediately stage 4 with 9.5 cm tumor on left kidney with mets to right kidney, lungs, ribs, left hip, lymph nodes, spine and had the kidney removed June 28th but never got the chance to take treatment other than Thalomid for 2 weeks before he died. He ended up having a massive heart attack after many complications and numerous hospital stays these short 2 1/2 months of fighting it. His last days revealed brain tumors 1 cm in size with one being the size of an orange that had grown within 2 weeks (brain was clear 2 weeks prior to that). It had also spread further throughout the spine, to the spleen, and bone marrow (which caused hemoglobin and platelet problems) and lung tumors grew. He was/is the love of my life. Even though he tested negative for VHL as the cause, our children have a 50% chance of developing the gene mutation that causes kidney cancer. I'll be damned if I lose another family member to this disease. Tell me how to help bring attention to this sneaky killer. My husband's doctor says she thinks he had it less than 6 months at the time of diagnosis and another doctor says he's never seen such aggressive kidney cancer (and he specializes in it). My husband also smoked for 20 years which probably contributed to it also. If only he had some type of symptoms to be detected early, maybe he would have had a chance. We (and our family doctor) thought he had bronchitis for a month before his diagnosis. I don't know how to be an adult without him as we started dating my senior year in high school. I wish we would've talked about living wills, etc. because I am not handling what happened well at all. The only way I can think of to possibly help me get through this is to keep the promise I made to myself and God that when my husband got through this (I thought he would be in remission) that I would help in any way I could to make sure no one else had to go through this nightmare. Tell me how to help! Zenky Mon, 29 Aug 2005 00:00:00 GMT Zenky, First, I am so sorry to hear about your loss. Kidney cancer is sneaky and very aggressive. My dad, like your husband, seemed to not have a chance against it. Initially, I wrote to the local tv stations here in the Philadelphia/NJ area, emailed Oprah, emailed the morning shows, and I have gotten no response. Well, one doctor from one of the local news stations did reply and told me that he wouldn't do a story on it pretty much because its not a "big story." I believe that those of us who are/have lived with loved ones and lost loved ones to this illness should write all these people time and time again. I also think we should contact the local papers. People need to know what to look for since symptoms can be masked. I am interested in writing a book telling the different stories of those of us that have experienced this awful cancer in one way or another. I just need help. Labor Day just passed, as you know, and it reminded me that his last Labor Day was one filled with pain all over his brain, as he used to say. We must not give up on bringing attention to this awful cancer. Unfortunately, it will take something like a celebrity dying of it before anyone talks about it. Let's try to prevent that, though. You can reach me at my email address and anyone else who is interested in bringing attention to this awful killer....--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. My heart and prayers are with you and your family. Deepest sympathy, Vinnie Daddy's Girl Tue, 06 Sep 2005 00:00:00 GMT Hello Wanda, I live in the dallas area and my husband just discovered he has a mass near the kidney and adrenal glands. Immediate further testing is scheduled. I am doing some independant research to find out more information. I would like to know the name of your doctor. I was touched by your story. Thanks, Elaine Myjama Tue, 24 Jan 2006 00:00:00 GMT Hi Elaine, My doctor's name is Jeffery Cadeddu. He is a great doctor and the one who discovered the procedure(radio frequency ablation(RFA). Copy and paste the link below into your browser and you will see his information. Click on CONTACT INFORMATION at the top of that page and it will give you the phone number, etc. Let me know what what you find out. It will be 4 years this June since I had the surgery. It is really awesome. I live in Rockwall, TX, which is 25 miles east of Dallas off 1-30. Wanda http://www8.utsouthwestern.edu/UTSW/FacDir/CDA/FindADoc/Results/FacDir_DocSearchPro/0,2364,41601,00.html SIGNIFICANT PUBLICATIONS: Ogan K, Jacomides L, Dolmatch BL, Rivera FJ, Dellaria MF, Josephs SC, anc Cadeddu JA, "Percutaneous radiofrequency ablation of renal tumors: technique, limitations, and morbidity" Urology, 60:954, 2002 RECENT PUBLICATIONS: Anderson JK, Matsumoto E, Cadeddu JA, "Renal radiofrequency ablation: Technique and results." Urol Oncol., 23(5):355-360, September 2005 Catsmeow Tue, 24 Jan 2006 00:00:00 GMT Dear Wanda, Thank you so much for your immediate response! My husband had a CT scan today and we are scheduled to see his regular doctor first thing in the morning. It is a difficult day. We live in Garland, in the club hill area. You can email me privately at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you would like to. I am going to pull up the information you gave me right now. Thank you so much! Elaine Myjama Wed, 25 Jan 2006 00:00:00 GMT i am replying to a msg from 2002 - my father has also been diagnosed with this - has spread to his blood, bones, and other organs - any hope for anything for him - i contact you because it sounds like you were researching things for your father - i am so sorry to hear of what happened to you and yours - very terrible disease - until 4 weeks ago, maybe 3, we didn't even know dad had cancer, he's 75 and was still working every day, feeling fine, fell at work and gashed his head and became unable to walk 7-10 days later; upon investigation, the doctors found a small tumor in his brain and so on, until we are at the point we're at today - no treatment, other than Nexavar - he's at home now, feels fine, other than the not walking, and, thank God, is in no pain today. I'd be more than willing to help type the way to more awareness of this disease. I can't help but think that he'd probably be able to whip this if he'd known much sooner. thanks for your time. Dana Danaw Sun, 28 May 2006 00:00:00 GMT While reading all these wonderful posts, I wonder if we RCC Warriors miss the point when it comes to early detection and more effective treatments. Having been in the big time magazine business for more than 30 years, I can tell you with some authority that publicity, while it feels good and may offer a small amount of help, is not the avenue for earlier detection of RCC. It is finding a way--and many researchers are working on this--to recognize this disease before it reaches Stages 2, 3, or 4. It is the lack of symptoms, except blood in the urine and pain from bone mets, that makes it such a cruel cancer. My internist thought I had a bleeding ulcer, but I demanded a CT scan nearly three years ago. I had a bleedling tumor--and 23 more to go with it. I was in Stage 4 before I even knew I was sick...at least that sick. Not the first symptom that said to any my doctors that this might be cancer. As I said, I had to demand the CT scan that discovered the awful spread of it.So instead of magazine articles and newspaper stories (which are fine), perhaps we would be wiser to put more pressure on the medical world to find some way to understand RCC symptoms better, though for many of us none make themselves known until we are Stage 4 and in the fight for our lives.The good news is that within the last two years we have added three very effective treatments for advanced RCC. I am on Sutent, now have fewer than four tumors in my body (plus five little ones in my brain), but I am still not living the life I want to live. Had my doctor had a light come on just a year earlier, I most likely would not have found myself in this situation. Those of you who feel a little activist about all this might consider writing letters to the Medical Journals. Now that is effective because your target audience is researchers and your personal story told by you is much more powerful than any story reported by someone else, regardless of the medium.I try to do that in my blog and have had some response from medical professionals. Our goal might be something like: Diagnosis within Two Months. That would save untold agony and thousands of lives. Then we could take one "c" word out of RCC. Cruel. David Fosterwww.mpablog.typepad.com/david_fosterOr search David Foster Cancer       Davidf Tue, 04 Sep 2007 00:00:00 GMT I am replying back to Vinnie B's message in 2002.  My mother was diagnosed at stage 4 in 2003.  She had no symtoms as well and was still working hard.  She had a gallbladder attack and that's how it was found.  It spread to a lot of places in her body.  She was on a clinical trial treatment that worked wonderfully for about a year, but the side effects became to much.  She is on another form of treatment now and so far it seems to keep the tumors down.  Doctors gave her 1 year and we are going on 4!!!!I have been trying to raise awareness here in NC.  We have sent the local news stations emails and letters, and nothing has happened.  I cannot believe that only a handfull of states have a Kidney Cancer Awareness month in March.  We all should have it.  I want to raise my voice and fight for awareness as hard as my mother is fighting for her life.  Not to be selfish, God bless anyone who has any type of cancer, but I get a little frustrated when all we her about is breast cancer.  I want awareness for Kidney Cancer!!!  Most of the time when people are diagnosed its really bad usually because they didn't catch it sooner.  People need to know!!  I will help and I am pushing it in North Carolina.  God Bless All, Take Care!Melissa mofab17 Thu, 11 Oct 2007 00:00:00 GMT I just found this site, two weeks too late actually.  My dad passed away from RCC on August 5, 2008.  He was diagnosed originally in Dec. 2006.  At that time, they removed his left kidney because of the tumor, and gave him a clean bill of health.  The only thing was that he needed to follow up in 6 months with a PET scan.  Well my dad did not have insurance so he was unable to get the $10,000 scan.  His cancer came back, but disguised as a cough like the others I read about in the previous messages.  They treated him for pneumonia for 2 months and finally found fluid around his heart on an x-ray, which lead him to the ER for a cardiac window to drain the fluid.  That is when they found the cancer again, April 2008.  He was given a good prognosis by is oncologist so we were not worried.  He started treatment with Torisel, but quickly became very sick.  He was in and out of the hospital, every 2 weeks, for at least a 10 day stay each time.  No one could ever give us a straight answer.  The doctor stayed very positive so we trusted him.  (the bastard) Sorry, I am still in the angry stage :(  It wasn't until they decided on July 23, 2008 to put drains in this lungs to continuously drain the fluid, that it got so bad. That was the last day I had a conversation with my father.  He never completely came out of sedation from surgery.  They were keeping him sedated because of the breathing tube and said he would be back in his room by Sunday.  Well, the following Wednesday came and I was told the doc wanted to speak to me about my father's options.  But he never called.  I left messages and waited, and finally on Monday, Aug. 4, he told me and my family that there was nothing else they could do.  They gave him less than 6 months to live.  He died the next day.  I am still in the shock and confused state because even though it was happening all along, I still can't believe he died.  I have 100% faith that God is now taking care of him, because we can't.  I am 2 semester's away from graduating from nursing school, which was my father's dream to see.  He was (and I'm sure still is) my biggest supporter, and I will do everything I can to make him proud.  On April 17, 2009, just one year after his final diagnosis, I will become an RN.  It has been very hard to deal with school while all this was going on with my dad, but he would never let me give up.  He always told me to learn from his experiences, and let this help me to be a better nurse.  Your messages made me cry when I read them because I have felt so alone in all this.  I wish I would have found you all sooner, but it gives me peace now to know that I am not alone.     sjn91979 Wed, 20 Aug 2008 00:00:00 GMT