CancerCompass message board discussion started by Andrea From dc on 9/27/2005 http://www.cancercompass.com/message-board/message/all,3060,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm wondering if anyone with sarcomatoid RCC has tried sorafenib or sutent. If so, what were the results? There are no clear cell features in my cancer - only chromophobe features. I've tried 3 different sets of chemo, if the current one doesn't work, I'll have to try something else... Andrea From dc Tue, 27 Sep 2005 00:00:00 GMT Andrea, Hello. I wanted to tell you my sister is on sorafenib for Renal Cell Carcinoma. It is too soon to know if it is going to work. She just started on this drug 2-3 weeks ago. The cancer is in her lymph nodes, lungs, left hip bone, and many different vertebrae. She will go back for a check up in a week and a half. Are you are anyone you know thinking about using sorafenib for RCC? Casey Caseymarie Tue, 27 Sep 2005 00:00:00 GMT Hi Andrea -- I have sarcomatoid rcc, but have not yet tried Sutent or Sorafenib. I first did Interleukin-2, 2 complete cylces. Half my tumors shrunk and half continued to grow. Now I am on Avastin and Tarceva, and after six weeks the results don't look too promising. I'll have another CatScan December 9th. I have kidney cancer tumors in a foot bone, the skin, and nine in the lungs, 4 of which are growing. You are the only person I've found who asks questions about sarcomatoid rcc. There isn't much info our there as near as I can tell. I would love to be in touch with you. My name is Gary Cox, I am a minister in Wichita, Kansas, and I was diagnosed in March of 2005. My oncologist expects to try Sorafenib or Sutent next. Best wishes to you. Gary Cox Garyinkansas Sun, 13 Nov 2005 00:00:00 GMT Since my RCCis Sarcomatoid, my oncologist advised against IL-2, and suggested, instead, I try chemo. I've been on 4 different chemo's since my surgery in February. Six weeks ago, my oncologist suggested I tried Taxol and Carboplatim. I've had lots of side effects over the past months, but since the Taxol/Carb, I've been feeling very well. My only complaint is hand-foot sandfoot, which is pretty uncomfortable, and some fatigue. I'm getting the results of my latest PET scan tomorrow and will find out if the Tax/Carb is working (in 2 of the other chemos I was on were stable, one got worse). If my PET shows that the tumors got larger, I'll be trying Sorafenib next. I'm in the DC area. My favorite oncologist is Dr. Nancy Dawson, of the University of Maryland. She has been advising my local oncologist on recommended treatments and I think she's wonderful!. Andrea From dc Tue, 22 Nov 2005 00:00:00 GMT Hi Andrea -- It sounds like you are getting good care. My oncologist is Peter VanVeldhuizen at University of Kansas Medical Center in Kansas City. I think a lot of him, and drive 3-1/2 hours for each appointment (from Wichita.) It is really good to see you are hanging in there. This sarcomatoid element of RCC is so unusual, nobody seems to know what to do. OBviously the 4 types of chemo you've had have done some good. They tell me that all we can do is string together a series of treatments. My current Avastin/Tarceva chemo does not seem to be working. I'll know for sure December 9th. After that I expect to try Sorafenib or Sutent. Have you read any of the studies? It looks like the Sutent might be having slightly better outcomes, but it is too early to tell. By the way, I demanded they try Interleukin-2 on me. Half my tumors shrunk and half kept growing. But you didn't miss much by skipping the IL-2. I have never been so horribly sick in my life. It is as bad as they say! Blessings to you. Keep the faith, and please stay in touch! Gary Cox Garyinkansas Thu, 01 Dec 2005 00:00:00 GMT I have sarcomatoid RCC with chromophobe features -- I don't have any clear cell components. Do you have sarcomatoid with clear cell features or chromophobe features or something else? Let me know how your scan goes later in the week. Do you think the Avastin/Tarceva isn't working because you were feeling lousy? On one of my chemos, I had a fever for the entire 6 weeks. Sure enough, my tumors were getting bigger... Please keep me posted on the sutent and sarafenib. They are options for me in the future! Andrea From dc Mon, 05 Dec 2005 00:00:00 GMT When my kidney was removed they found both sarcomatoid and clear cell elements. However, when they removed a kidney cancer tumor from my shoulder, they diagnosed it as chromophobe. It is all a bit confusing! The reason I doubt my Avastin/Tarceva is working is because I have three visible tumors--chin, scalp and back. They shrunk after the first two weeks of treatment, and then stopped shrinking. The one on my scalp has grown quite a bit over the past few weeks. It is the tumors in and around my lungs that are posing the most danger, and I'll find out about those Friday. I'll keep you posted. AND THANKS FOR RESPONDING! It is nice just to have somebody else who has heard the words sarcomatoid and chromophobe. Even my kidney cancer support group does not speak THAT language! Blessings--Gary Garyinkansas Mon, 05 Dec 2005 00:00:00 GMT hi Andrea -- The Avastin/Tarceva slowed the growth of the tumors but did not stop or shrink them, so I will now try Sorafenib. I have to wait 28 days so the Avastin can work its way out of my system. I will start Sorafenib on January 6. I hope things are going well for you. Stay in touch! Gary Garyinkansas Thu, 15 Dec 2005 00:00:00 GMT Gary, Sorry to hear the Avastin/Tarceva stopped working, but hopefully the Sorafenib will! I'm getting another PET scan in early January, and if my chemo isn't responding, I'll be trying Sorafenib too. In May, I found out about a study that was being done on Sarcomatoid RCC (one of the co-chairs is Janice Dutcher, from NY). While I was not part of the study, I was given the same chemo treatements and the same dosages -- Gemzar & Adriamycin -- by my local oncologist, who was able to find the study. I was on it for 8 treatments, and my cancer was stable. That might be something you can try if the Sorafenib doesn't work, and maybe you'd have better than stable results! -Andrea Andrea From dc Fri, 16 Dec 2005 00:00:00 GMT Hi Andrea-- I have a dilemma! I got the written results of my CatScan, and they are troubling. I have some new tumors and some others are growing. I have several options and my oncologist is leaving it up to me. The Gemzar chemotherapy treatment is one option. The other option is Sorafenib. I can't start the Sorafenib for one month (January 6th). My oncologist is somewhat concerned about waiting that long to begin a new treatment. I could start the Gemzar treatment in the next 10 days and it lasts two months. I could then immediately afterward try the Sorafenib. However, the Gemzar treatment does not have quite the success rate of the initial Sorafenib trials. Your words about the Gemzar were encouraging. I just don't want the disease to take hold to the point where the Sorafenib will not be very effective. I know you understand this dilemma and I would welcome your thoughts on these options. By the way, you may correspond with me directly at my email: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Blessings on you in your struggle with this disease -- Gary Garyinkansas Fri, 16 Dec 2005 00:00:00 GMT Gary, Not sure if you got my message. If not, check your spam box -- I have an unusual email address! Andrea From dc Tue, 20 Dec 2005 00:00:00 GMT Caseymarie - I'm curious to hear how your sister is doing. Did she continue on the Sorafenib? If she switched to something else, let me know! Andrea From dc Fri, 23 Dec 2005 00:00:00 GMT Andrea, I in a phase III trial study using Sutent and the results have been great. I had my right kidney removed in 2002 and went a year and a half with no problems. In 2004 the renal showed up in both of my lungs, worse in the right lung. I had surgery and had part of the right lung removed and decided to find a chemical fix for the problem. It wasn't until May of 2005 that I was able to get on trial program for Sutent at Vanderbilt University Medical Center. So far the results have been great, the large tumor in my left lung has been reduced by 60% and the small ones cannot be seen to measure. Their are side effects to this drug most common being itching, fatigue, taste to name a few. Pfizer is suppose to get approval in a couple of months for Sutent and I am going to stay with it, it is doing the job for me. I also think nutrition is important while on any of the drugs. Bob Prayerman Mon, 16 Jan 2006 00:00:00 GMT Hi Gary- My name is Renee from Baltimore, MD, I was diagnosed with a rare lung disease 6 yrs. ago, and now my doctors are eager for me to try this new drug Sorafenib. I was wondering if you had started taking the drug or had any other info. Anything would be appreciated. Hope you are doing well. Renee Newyorknewyork Fri, 27 Jan 2006 00:00:00 GMT Gary, I wanted to know how you were doing? My husband,Tom,had his left kidney removed a month ago. He is in stage 4 of Rcc Sacromatoid. He started taking Sutent last week and will start interferon treatments next week. My prayers are with you. Dee Deliotila Wed, 24 May 2006 00:00:00 GMT I read your message and I am wishing to know how the treatment for your wife went, please. My wife has just commenced and has similar symptons. Tommysea Belfast n Irelan Wed, 18 Oct 2006 00:00:00 GMT  On 5/24/2006 Deliotila wrote:Gary, I wanted to know how you were doing? My husband,Tom,had his left kidney removed a month ago. He is in stage 4 of Rcc Sacromatoid. He started taking Sutent last week and will start interferon treatments next week. My prayers are with you. DeeDee,i was diagnosed with sarcomatoid rcc in April of this year.I had my right kidney and tumor removed and now have tumors in both lungs.My treatment consist of Gemzar, Avastin and Xeloda.I will have scans next week to see if the treatments are working.How is your husband?Any word from gary and his treatments?James James r. Sun, 24 Jun 2007 00:00:00 GMT  On 5/24/2006 Deliotila wrote:Gary, I wanted to know how you were doing? My husband,Tom,had his left kidney removed a month ago. He is in stage 4 of Rcc Sacromatoid. He started taking Sutent last week and will start interferon treatments next week. My prayers are with you. DeeHi DeeI wanted to know how your husband is doing? my husband had his left kidney removed a month ago, he had stage 1 5 cm sarcomatoid renal cell carsinoma, we are currently in the process of going to try a clinical study where they will use one of three meds Sutent, Sorafinib and a placebo but we won't know which one he will get. Any info you can give me would be appreciated.Donna  dizedona Sat, 19 Jul 2008 00:00:00 GMT I am new here. My husband has just been diagnosed with Sarcomatoid Renal Cell Carcinoma. He is 75 years old and has coronary problems (high blood pressure and chlorestral) along with this but in good spirits. He takes several medications for these problems.  He had his left kidney removed Aug. 6, 2008. The operation was a success in that they got all the cancer in the kidney and the surrounding margins were clear of cancer. However, he had 2 lymph nodes that were suspicious at the time of the operation. The surgeon could not remove them as they were on or very near the arota artery and it would have been too risky. These 2 lymph nodes lit up on PET scan. So Oncologist is going on the assumption that it is cancer and treating him first with Sutent. He just started it 2 days ago. Doing fine so far. His creatinine level has raised and is above normal in his one and only kidney and so that is a something he has to watch. Doctor told him that it was an ncurable and very aggressive form of cancer, also highly resistant to treatment. Doctor says he has 3 methods of treatment and this Sutent is one of them. He maybe can halt the cancer's progress or put it in remission. Is there anyone on here who has this form of renal cell cancer and making progress with this Sutent? He takes this Sutent for 28 days and then off 14 days for 2 times and then another PET scan. I am wondering about the side effects of the medicine as I want the quality of is life he has left to live to be more so than the quanity.. I had  a sister who died with Leukemia and I know what the effects of chemo did to her and do not want to see him go through the same thing,  It is such a comfort and help to have others to talk to that are going through this. Anything you can enlighten me too, I will appreciate, God be with all of you. Hugs!! Ediekay Mon, 29 Sep 2008 00:00:00 GMT Hi Caregiver,  I wish I had some information for you, but I'm brand new here.  We just found out two days ago that my husband also has sarcomatoid clear cell carcinoma of his right kidney which was removed on September the 3rd.  He is 64, in good health (otherwise) and working.   We have our first appointment with an oncologist next Wednesday.  We, also, are still waiting for the pathologist to read another slide to see if the tumor invaded the collection system in the kidney.I've been trying to stay off of the internet because a little knowledge is a dangerous thing, but this forum seems to be the best.  We're located in Philadelphia and are going to Abramson Cancer Center at the Hospital of the University of Pennsylvania.  Our oncologist is supposed to specialize in kidney cancer.   Our surgeon told me my husband does not have metastatic disease, but from what I've read it always is.  I don't understand, but I guess this is just the beginning and I have a lot to learn.  His tumor was 5cm located on the top of his kidney.   Do you mind telling me where you are located ?  If not, I understand.  It's good to use this forum and write to people that are going through the same thing.Nana62        nana62 Wed, 01 Oct 2008 00:00:00 GMT HI everyone,  My last message was meant for everybody on this forum.  I just need to vent, the anxiety of this is overwhelming for me right now because of the waiting and I have to stay strong for my husband.  I'm in health care so I understand a little more than he does and he is not yet aware of the seriousness of this type of RCC.  Hope you all are doing ok and I would welcome all replys Nana62 nana62 Wed, 01 Oct 2008 00:00:00 GMT Nana62. I am 67 years old and live in Southern Illinois. My husband is being treated in Cape Girardeau at an Oncologist associated with St. Francis Hospital there. I have quit reading about this cancer on the internet as I am just getting nowhere.  I am going to put it all in God's hands and take one day at a time. I know that God is in control and only He knows how much longer any of us have to live.  He has a purpose and reason for all of us and I believe when you have served that purpose, He will call you home. I truly believe that we go through these trials to help other people. That is the main reason why I joined  this forum. Yes I want to find out how others are dealing with this cancer and compare notes on this treatment, etc. but my main concern is to give others strength and to instill a faith in God in them if they do not have one..  When you help someone, you help yourself too and then everything becomes more tolerable. When you get this ole cancer, you immediately think, why me, Lord or why my husband? What have we done to deserve this? God didn't let this happen to punish us,that's not how He works. He loves us and He suffers right along with us. He knows just how much we can bear,  He knows everything about us and He will never forsake us to suffer anything alone. So take heart, He knows all. Keep a positive outlook and tell your husband too. Keeping a positive attitude helps immensly in healing. We can help each other and in turn help our husbands and any others who might be reading this.  I didn't mean to get so carried away. Hope I didn't bore you and hope I don't drive you away.. I think you are  in a great place for help there at Abramson Cancer Center at the Hospital of the University of Pennsylvania. Sounds like a winner. I checked it out! ;-)Just a little about us. We will be married 50 years in January. We have 2 children, 7 grandchilden and 2 great grandchildren. Our reasons for living. All of them blessings from God.:-) Hugs, Ediekay Ediekay Wed, 01 Oct 2008 00:00:00 GMT Hi Ediekay,  No you did not scare me away at all.  I agree with you, this is in God's hand and I know from living 62 years that when I am able to do that I find that I'm given a lot of peace within.  Our surgeon called to day and the pathologist said that there was no microscopic invasion of the pelvic region, making this a T1 tumor.  Our appointment with the Oncologist is next Wednesday.  He is supposed to be the kidney cancer expert here on the East Coast.  It's one day at a time right now and really that's how we should live our lives.  You sound like you have a beautiful family and what a wonderful thing that you have been married to your husband that long.My husband and I married late.  Second marriage for both of us.  We've been married for 12 years.  We were both in our early 50's.  I have 3 stepchildren and two beautiful granddaughters.  My thoughts and prayers are with you.  Thank you so much for your reply.  It was really what I needed to hear.Nana    nana62 Wed, 01 Oct 2008 00:00:00 GMT