CancerCompass message board discussion started by Ninersnanny on 12/11/2005 http://www.cancercompass.com/message-board/message/all,3717,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband is 72 yrs old. In 1991 he was Diagnosed with RCC and had a total left nephrectomy. March of this 2005 he had left sided pain and had a CT Scan of abd and Pelvis and showed a 8cm tumor on his right kidney. The doctor removed 1/4 of this kidney and at the 4 month check he had a Ct scan and showed that it spread to his lungs. The tumors were less than 0.7cm and are multiple lesions. He tried I-L2. he had 2 hospital stays and then a follow-up CT Scan which showed little change but the doctor encouraged him to continue. After 2 add'l hospital stays he had a repeat CT Scan and it showed that the RCC now spread to his sternum and Thoracic vertabre. Treatment was stopped. We live 5 miles from the Milton S Hershey Medical Center they are also a research and teaching hospital. The are approved for Sutents Expanded Access Program. However, it will not be finalized until the middle of January 2006. It doesn't seem like a very long time to wait, but this seems like a very aggresive Cancer. We would like to start Sutent sooner. Within the next week. But I am having a difficult time locating a facility closer than Cleveland Ohio. Does anyone out there know any place closer to Hershey Pennsylvania that has the Expanded Access Program? Any help would be greatly appreciated. The wife Ninersnanny Sun, 11 Dec 2005 00:00:00 GMT Join the KIDNEY-ONC email list (see http://cancerguide.org/kofaq/) and ask your question. One of the listowners has a list of centers where Sutent is available. Trishpm Thu, 15 Dec 2005 00:00:00 GMT I'm not sure about the Expanded Access Program but I am currently participating in a sutent clinical trial study at the Masonic Cancer Center at the University of Minnesota in Minneapolis. I have gone through 3 treatment cycles (28 days on and 14 days off) and have seen amazing results. After the first treatment my tumopr reduced 34%. After the second treatment the tumor showed no metabolic activity (it was "dead"). After my third treatment their were no signs of the tumor in my body. The doctor termed this a complete response. Good luck. PS. If you are not able to access sutent there is another drug that was just approved this month by the FDA and it has recieved similar results. The drug is marketed under the name Nexavar. Bunker Wed, 28 Dec 2005 00:00:00 GMT Can you please give me more specifics on your cancer, if you don't mind. My sister recently underwent 3 surgeries for RCC and just began Sutent. Please give me any info you think may be helpful, I would greatly appreciate it! Sutent seems to be our miracle drug (it has only been two weeks and they think there is shrinkage). Thanks Allison Allison0106 Wed, 03 May 2006 00:00:00 GMT My brief history: I was diagnosed with kidney cancer and had my left kidney removed. They thought they got it all but it reappeared on my liver 5 months later. More surgery to remove part of my liver. Two months later it had returned to the same spot on my liver. That is when I went on the experimental drug Sutent. The first treatment cycle (which was 28 days) resulted in a 34% reduction in tumor size. Then two weeks off drug. The second treatment cycle resulted in additional shrinkage but more importantly the metabolic activity had ceased (the tumor was "dead"). Both of these treatments were at the full dosage (50mg/day) and there were some side effects--mostly fatigue, flu like symptoms, and my hair turned white. After two weeks off I started my third treatment again at the full dosage. This resulted in all signs of the tumor being gone. My doctor then switched me to a lower doasage (37.5 mg/day) and three weeks off in between treatments. I completed treatments #4-6 with this approach partially waiting for the drug to gain FDA approval so that I could stop the drug but still have access if I left the trial. Last Thursday I completed my 6th treatment and met with my doctor. He declared my response a "complete response" to the drug and stopped the drug. I'm now going to be monitored at 6 weeks and then at 3 month intervals. The results sure made the unpleasant side effects worthwhile. Hopefully my respone to your question wasn't too long. If you have additional questions please let me know. Bunker Wed, 03 May 2006 00:00:00 GMT Thanks you Greg for the reply, you have been very helpful. I will try to let you know the progress. Congrats on your complete response!! Must be exciting. Allison0106 Thu, 04 May 2006 00:00:00 GMT Did the Sutent every cause any problems with internal bleeding, fluid or low platelets? My sister was currently admitted to the hospital for internal bleeding, she was undergoing radiation and Sutent, they think the bleed was cause from the lining in her stomach bleeding from the radiation. Now that problem is solved, she has fluid surrounding her lungs and her biggest problem is her body is not producing platelets. I was just wondering if you experienced any of these problems. Thanks Allison Allison0106 Tue, 23 May 2006 00:00:00 GMT Yes, please keep us posted on your sister's progress. We have learned many important things during my journey---take control over your treatment including learning an much about the disease as possible; value family; and keep a sense of humor. For me, I used a series of T-shirts that we had made special. I made it a point to wear them to my appointments to share with the lab folks and my doctor. My last one stated "Have no fear, Wunderdrug is here!! with a picture of underdog holding a bottle of my pills. I stay focused but find humor to carry me through as a balance. It really helped with the mind. If I can be of help please don't hestitate to contact me. Bunker Tue, 23 May 2006 00:00:00 GMT In particular, did you have a drop in platelets after taking the Sutent? This seems to be her major problem. Also, did you have a problem with fluid?? Thanks for your response. Allison0106 Tue, 23 May 2006 00:00:00 GMT Since I originally entered the Sutent treatment program via a drug trial, my bloodwork was monitored very closely. In all, I had about 20 different tests done each cycle. I don't remember a platelet test specifically but my bloodwork looked very good throughout my treatment. One other area that they monitored closely was my heart through a MUGA scan which measures the efficiency of the heart. For most patients in the trial on Sutent their heart function got less efficient but mine improved. I did gather from my doctor that not all of his patients handled the treatment quite as well. No problem with fluid either if you are referring to fluid retention. I did have flu like symptoms every cycle. One thing my doctor was real good about through the multiple treatments was that we would discuss the side effects and if I could tolerate them. He would prescribe the appropriate medicine to reduce those side effects---nausea for example. I also had alot of acid in my system which made restroom activities pretty painful. Hope this helps. Bunker Tue, 23 May 2006 00:00:00 GMT Great job Greg! My Dad has had similar initial success as you have on sutent. We go for his next CT tomorrow following his third cycle. Please keep me posted on your continued success. I find you positive attitude great and have been using your messages with my Dad and during discussions with his Oncologist. Life is worth fighting for. Keep the faith! Howie Tue, 06 Jun 2006 00:00:00 GMT Good luck on his CT scan and stay the course. I truly believe that life is what you chose to pursue. Please stay in touch. Bunker Wed, 07 Jun 2006 00:00:00 GMT Thanks for your post of sutent experience. I'm currently in cycle 3, with a 30% shrinkage measured after cycle 2. Side effects are not terribly uncomfortable but irritating nonetheless. Initially fatigue was an issue but was not in cycles two and three. Taste changes and mouth irritation make eating (and the desire to eat) a chore. Sweet is about all I taste. One can live on MM's and oranges for only so long! Diarrea and nauseau are only experienced occasionally. I do have lower back (butt) pain that is mostly but not totally relieved with ibuprofen. Without painkiller sitting and standing motion is quite painful. Latest CT showed my colon swollen and may contribute to the pain. Has anyone else experienced anything like this? Mh14003 Thu, 31 Aug 2006 00:00:00 GMT Can you give us an update on your condition? My wife was placed on 37.5mg of Sutent and Taxol for Stage IV Metastatic Breast Cancer. 28 day cycle with 37.5 mg Sutent daily and Taxol every week for 3 weeks then a week off. After 2 cycles CT showed all lung tomurs gone all small hepatic tumors gone and the 3 large ones shrunk by at least 50%, CT again in another month after 4 cycles hopefully more improvements. Dam555 Thu, 14 Sep 2006 00:00:00 GMT Dam555, Excellent News!! My doctor has told us that they were using Sutent with other medications as a treatment for breast cancer---this is great. My last doctor's appointment was 8/11. No signs of a tumor. This means I've been tumor free for 6 months and I've been off Sutent for 3 months (now 4 months). The approach to stop taking Sutent was a bit risky since the drug is so new and no one really knows how effective it will be long-term. My doctor is very interested in my progression and shares this information with his other patients. My wife and I made the decision to stop taking the drug since I had no signs of a tumor and this changed the benefit/side effects ratio. For us, this meant that Sutent had done it's job. Neither one of us are doctors but it made sense logically that this drug was able to treat the entire bloodstream in addition to the original tumor. Our attitude is that Sutent did it's job and we have things under control. My next appointment and scan is scheduled just before Thanksgiving---how appropriate. Good luck to you and your wife. Please keep us posted on her progress. We love to share this positive feedback with other cancer patients. Bunker Fri, 15 Sep 2006 00:00:00 GMT Hi, I just saw a posting that you entered on this website back in May and I'm wondering how your sister is coming along since taking Sutent. I just stated my first doage of 50mg 8 days ago. so far everything is going well. Any information you could provide would be greatly appreciated. Thanks again, Willard Willard-nl Sun, 17 Sep 2006 00:00:00 GMT Bunker, Thanks for your encouraging update, my wife has a CT of chest and abdomen in 4 weeks. It's terrible pressure to wait that long as we want to see how she has progressed. The first 2 months were so good we want to see what happens in the next two. She is in a clinical trial(phase 1) and they want her to take the Taxol and Sutent for a full year, but the Dr will give her some breaks if she gets too many side effects. We have to remain in the trial if we want continued access to the Sutent as it hasn't been approved for BC. I think most of her side effects, low WBC and RBC counts, some slight fatigue are due to the Taxol, she is however having a lot of acid reflux, is this something you had? I think Sutent maybe one of the biggest breaks in cancer treatment in years, let's hope so for everyone's sake. Please keep us posted. Thanks, Don Dam555 Thu, 21 Sep 2006 00:00:00 GMT Don, thanks for the wonderful update. Whoever said patience was a virtue must have had too much free time on their hands. On a semi-serious side, I treat every upcoming scan as Christmas---there's a lot of nervous anticipation and I'm expecting to really like the gift (I mean news) but if I don't get what I want (bad news), we'll approach that option aggressively. This really helps with my patience. You mentioned that you all have had a really good 1st two months. Did you see some results during this time or are you referring to how your wife has handled the treatments? We we told by our doctor that there were trials going on for BC using Sutent and other drug combinations--what is Taxol and what dosages is your wife taking for Sutent and Taxol? I like to learn more about the current treatments to share with others. BC has been a tough one and this news is so exciting!! We're right with you regarding your comment about staying on the trial to have access to Sutent. We took this same route with my doctor. We totally agreed with his approach to keep me on the drug until it got FDA approval for RCC. This probably meant that I was on it for two "extra" cycles but since the long term effects are somewhat unknown (only due to the newness of Sutent) this was still a wise investment. With the FDA approval for RCC, now we have options. Acid reflux: yes I did. I tolerated it for the first treatment cycle and then we got smarter. By smarter I mean we talked to our doctor and he prescribed a medicine called Protonix. Protonix is kind of a stronger version of the over the counter Zantac. I tried Zantac but it did not do as good a job as Protonix. Please ask your doctor. One "trick" we also learned was to have some food in my stomach when I took Sutent. Originally, my doctor suggested that I take Sutent right before I went to bed so that I would sleep through any side effects. This worked pretty well but since I don't normally eat before I go to bed I started to have acid reflux due to stomach irritation. I switched to taking Sutent at supper time and did this for the last 4 treatments---this worked better. Protonix also requires a few dosages to build up in your system--just something to keep in mind. My wife and I do feel that Sutent is the Wonderdrug. I would volunteer to be their "posterboy" for free. We have been so lucky through our ordeal. Please stay in touch and Merry Christmas!! Bunker Fri, 22 Sep 2006 00:00:00 GMT Howie, it's been a little while. How did you dad's CT come out after his third treatment cycle? I trust that his success continues. Bunker Fri, 22 Sep 2006 00:00:00 GMT Bunker, I really appreciate you taking time and interest in our cancer treatment. My wife was diagnosed the end of January with Stage IV BC with mets to the right lung, liver, spine and ribs. It responded to hormonal treatment for a couple of months but then started to progress and we entered the clinical trial. After just the first two months the CT's showed the lungs had no visible tumors, the bone mets were either stable or shrinking, it was too early to tell and all the small tumors in the liver were no longer visible and the 3 large liver tumors had decreased at least 50% or more in size. That's why we are so anxious to get the 4 month scans. Taxol is aTaxane drug derived from the yew tree and has been used as first line chemo in BC for about 20 years. She recieves 120mg over an hour every three weeks then takes a week off. Debbie started at 25mg of Sutent daily and then incresed to 37.5 mg every morning, with no rest periods. She had been on Prevacid (sp) for about a month and just switched to Protonix about 3 days ago. The last 2 days she has been vomiting and had a headache, we don't know if it is the Protonix or a reaction to the chemo, but hasn't had it before. She is also on Procrit once a week and I give her injections of Neupogen 4 days in a row after chemo for low RBC and WBC counts. She also gets IV Zometa monthly to strethen her bones and make them more risistant to anymore mets. Her Oncologist is head of the BC treatment program at the Indiana School of Medicine and is one of the best and is quite well known so we are quite lucky as he has access to many clinical trials. Debbie is one of 5 patients in her Phase 1 clinical trial in Indiana so I feel that God played an important part in the timing that allowed her to be eligible for the trial in that if the Tamifoxifen had worked longer it would have been too late to get in the trial and if it hadn't worked to start with they would have started chemo and that would have made her ineliegable for the trial also. We have so much to be thankful for. Once again thanks for your interest, it's really nice to be able to talk with someone who has been thru a similar experience and has had good luck with the Sutent. It would just be nice to know how long it will impact the cancer but thats the price we pay for being on the cutting edge of a new treatment. I assume when they get the data in for RCC it will also apply to BC. Thanks again, Don Dam555 Fri, 22 Sep 2006 00:00:00 GMT Don, that's a great story---with excellent results. We are so happy for you and your wife. Timing, timing, timing: my wife and I have mentioned that often. Two years ago and my story would have been much different. God must have had a role and that is why I spent part of every day trying to help others understand their journey and keep them positive. As you mentioned, no one really knows the long term results with Sutent but here's my spin. In my mind it has performed as expected and I am cancer free. I live everyday with that mindset. However, if not I can always go back on Sutent or even better yet, it has bought me more time to where medical options will have advanced even further. Again with the timing thing. Good luck with the next scans and please stay in touch. Bunker Mon, 25 Sep 2006 00:00:00 GMT Bunker, Thanks for being here for people like us. We have no family close by and my parents are 83 years old and don't want to trouble them. we have a few friends from church that would help with anything but being able to talk with someone who has actually been in our shoes makes a huge difference.Thanks agian for being there for people like us. 2 weeks to scans and counting every day. Don Dam555 Sun, 01 Oct 2006 00:00:00 GMT Hi I have been looking for this medicine which is priscribed to one of my close family memeber in India. I have checked all the pharmacies here and couldn't get the medicine apparently it is sold only in States. Can anyone help me and tell me whats the best way to get. Any help will be appreciated. Regards Amit Amitk3 Fri, 13 Oct 2006 00:00:00 GMT My recommendation would be to contact the manufacturer of Sutent which is Pfizer. They have a website which you can get to via Google. I have taken Sutent in the US but I also correspond with three non-US RCC patients on Sutent---one in Austrialia and two in Canada. Good luck, it's a wonderful drug. Bunker Wed, 18 Oct 2006 00:00:00 GMT Don, I'm thinking that your wife's follow up scan must be soon or has just happened. How are things going? Bunker Wed, 18 Oct 2006 00:00:00 GMT Bunker, We got the results Tuesday and things weren't so great, the liver tumors had multiplied but the bone scan showed almost every tumor gone and tumor markers were down but due to the spread of the liver tumors we were pulled out of the study and are waiting to see the Oncologist next week to see where we go from here. Things were looking so good, we feel like the rug has been pulled out from under us. Please keep us in your thoughts and prayers and I will keep watching to see how you are doing. I still think Sutent is going to be one of the miracle drugs it just wasn't the one for us. Thanks for all your interest. Don Dam555 Wed, 18 Oct 2006 00:00:00 GMT Dan, I'm so sorry that you didn't get the complete results that we had all prayed for. There is a positive to take away from the treatment---all but the liver tumors are gone! I'm sure that this is a tough setback but now you can focus on getting the liver tumors under control. I'm not as fimilar with BC as I am with RCC but I do know that the medical community has and continues to have tremendous advances in the treatment of all cancers. Please keep your spirits up and focus on the future, not the past. I will always been available if you would like to "talk" and I will definately think of you and your wife often. Someday I expect to open an email and read that you all found the right treatment. Please know that you both will be in our prayers. Bunker Thu, 19 Oct 2006 00:00:00 GMT Bunker, I have read all your letters to the people that are suffering with RCC and am very impressed with how you keep people so hopeful. You are doing a wonderful job here. I resently found out that I have RCC at the end of July and had to have my right kidney removed on Aug 7. Unfortunatly it wasn't just confined to just the kidney it had spread to my liver (just a small spot), 2 spots in the bone of my spine and also in my lungs. I am on my 2nd round of Sutent and I also think this is going to be my miracle pill. I was on oxygen 24/7 for fluid around my lung and they had to drain most but the Sutent has seemed to take care of the rest. My breathing is so much better. I only use the oxygen once in a while, so I do feel the Sutent is doing it's job. They have me on the 50 milligram dose and so far so good. I do have a few side effects, feet hurting and my eyelashes and brows turning white but this I can handle. The longer I can stay on the higher dose the better. I do feel better when I'm on the Sutent then when I'm off the for the 2 weeks. I go back to the Doctors Nov. 20th 2006... I wish was sooner so I can see if the tumers have gotten smaller now. I would have to think so as the way I'm feeling. Wish me luck and also everyone reading this keep me in your prayers as I will do the same for all of you. And Bunker keep up the great work your are doing for people. You are probably helping to save their lives as I believe keeping your hopes, spirits and dreams up and never give up has a lot to do with the out come of things. I'll keep you informed with my progress and I can't wait to get to know some of the people on this message board. It's good to know someone else that is going through the same thing you are. Hope all is well with you. Take Care, Lisa Tiffany64 Fri, 20 Oct 2006 00:00:00 GMT Lisa, you are very kind. My wife and I have felt so very lucky throughout our entire journey with RCC and we have determined that we need to help others in anyway we can. Three consistencies are--maintain a positive attitude, gain as much knowledge as possible on this disease and take control of your own medical treatment (I don't mean self-doctor but as the "consumer" you should be the one to make selections). I also have a pretty good sense of humor which sure helps along the way. I'm glad to hear that you are on Sutent and you know what I think about this new drug. Have you had your first scan yet or does that come Nov. 20th? That first scan was really exciting for me and I will admit, I was a bit anxious. I'll share with you a "funny" story which I've posted before and you may have already read. I was on the 2nd day of my first treatment of Sutent and a friend stopped by who is also a dermitologist. He noticed a spot on my neck behind my ear that looked like a small pea. I knew it was there but didn't think much about it. Well, he told me to have it looked at further but he was confident that it was basal cell carcenoma. More good news, right? Well, the interesting part was that while the Sutent was hopefully doing it's "stuff" inside I had no visual signs that it was---just like you. Here comes the neat part--about a week or so into my first treatment, this spot on my neck started to dry up and within about 2 weeks it was completely gone. This is exactly how Sutent was supposed to be working on my RCC so it really encouraged me. This made my first scan very exciting and it will yours. You mentioned your eyelashes/brows turning white---so did mine as well as the hair on my arms, legs and hands. Pretty minor when you think that some treatments (like chemo) result in total hair loss. My sense of humor kicked in and I called my eyebrows "Tiger Stripes". It sounded sexy. If you would like to know---here I am off Sutent for almost 6 months and all of my hair has turned back to its original color--maybe even a bit darker. I agree 100% with you comment "the longer I can stay on the higher dose the better". I did everything I could to tolerate the side effects of the high dosage and only considered going to the lower dosage after my tumors were dead. Not all folks can tolerate the higher dosage though and even the lower dosage has had unbelievable results. I do wish you luck and please let me know how your scan comes out in Nov. I also have another one in mid Nov. and look forward to seeing my doctor again. He's a great guy. Bunker Fri, 20 Oct 2006 00:00:00 GMT Bunker I had my first scan last month but I had so much fluid on my lungs that they couldn't see the tumors the greatest, but from what they could see they did think that they were slightly smaller. I'm pretty sure the lungs are their main concern as my liver only has a small spot and my spine only has 2 spots. They did do 2 doses of radition on my spine so by spine wouldn't crumble in those spots, and of course the kidney is gone. The doctors did a pluradisis on my right lung this is where they seal the outer lining of my lung to my lung, so fluid wouldn't be able to build up in there which was causing me great distress. Well they were hoping once I was on the Sutent that it would get rid of the rest of the fluid and I can tell you now that I know the Sutent is working. Like I said I was on oxygen 24/7 and now I hardly use it at all. In Nov. they plan on doing just blood work and an X-ray. It sounds to me that they will alternate the scan to an X-ray everytime I go. I just hope that this will show results good enough to tell me if they are getting smaller. I wish they were doing a scan this time as I feel they are going to see a good change. With your side effects of your eyelashes and brows turning white, did your hair on your head turn white also. I keep joking to my family that if mine does I won't have to have a Halloween costume. I'll just be Casper the ghost or a Q-tip. I am like you I try to keep a sense of humor with all this as I think it helps to get though it all. My sister and I got laughing so hard about this that it started to hurt my insision from the kidney removal. Thank God for family. By the way how old were you when you got diagnosised with RCC? I'm 42, married to a great guy who is spoiling me and have 3 kids, oldest is 20 and a set of twins that are 17. Also other great family members that are so super that this gives me all the reason in the world to fight as hard as I can. I've got lots of years to be with them and I'm not ready to leave them yet. Thanks for your quick reply it helps to know that I'm not alone in this. Lisa Tiffany64 Sat, 21 Oct 2006 00:00:00 GMT Trick or Treat---you've got a nice plan for a Halloween Costume. Very creative. I was 47 when first diagnosed with RCC and my wife and I have three boys---19,22,25. My wife is a saint. My hair probably did turn a little more grey during the Sutent treatments but with three boys it was hard to tell from what I had earned by being their father. It was much more noticable in my eyebrows and on the back of my hands. You've got some very good reasons not to give up and timing is very good with all of the medical break throughs that have occured in the past 2-3 years. Good luck with your Sutent treatments. It's truely a wonderdrug. Please stay in touch. Bunker Mon, 23 Oct 2006 00:00:00 GMT Don, we haven't talked for a while. I'm not even sure that you are still reading this website. If you are, how are you and your wife doing? Bunker Thu, 02 Nov 2006 00:00:00 GMT Hello Bunker, Joined today to get an update on your progress. Your continued Great News makes me smile. You are a wonderful person as your find time to console and help others. My Dad's 3rd Scan continued with great results. He had only 2 specs on the bottom lobe of 1 lung that "may be" the reminantes of the lesions. The other bottom lobe and all other lesions have disappeared (had multiple on both lower lobes). He had his 4th scan today and we meet with the Oncologist tomorrow afternoon. We're hoping and praying all signs of the cancer will be gone. We take your same approach to each scan. The next decion we hope to ponder is how long to stay on Sutent or get off. I share your notes with my Dad before each meeting with his Oncologist. I also share them with the Oncologist. We're considering a couple more rounds, reducing the dose to 12.5 (taking 25 milligrams since the first round of 50 milligrams), scans every 3 months, etc. My Dad would sign-up to join you as a posterboy for Sutent. It has and continues to be our Wonderdrug. Thanks for staying in touch and checking on my Dad. I think and pray for you often. Cheers! Howie Howie Tue, 07 Nov 2006 00:00:00 GMT Nice to hear from you again and with such fantastic news. I correspond with others on this website and will direct them today to this posting to share in your dad's great results. This will be very encouraging to them and their loved ones. My wife and I completely understand where you and your dad are it relative to the "stay on Sutent" "go off Sutent" decision. We had the same decision to make about six and one half months ago. I'll briefly repeat my history since we haven't talked directly for a while and explain the logic behind our decision. I took a total of six Sutent treatments---2 at 50 mg/d and 4 at 37.5 mg/d. We saw great rsults with both levels. The first treatment resulted in a 35% reduction in tumor size and the second resulted in another reduction but most importantly the tumor was dead. Treatments 3-6 were done partially as a precaution since there really wasn't any history with Sutent; because Sutent had not received FDA approval and we still wanted to have access via the trial program. The decision for us to stop taking Sutent came in late April with my doctor's agreement. Granted only time will tell (I have another CT/PET scan next week) but the logic was a cost/benefit senario. The cost in this case were the side effects. You have not mentioned if you dad has had the usual side effects but I did. Certainly tolerable given the resutls but as time went on my thought was why continue to go through the side effects without any benefit. This was a bit risky since Sutent was new but it felt like a good risk. We were also very confident that Sutent had done it's job. Results so far are no signs of tumors since 2/06 and my last scan was in August. I feel great and have now concentrated on removing a few pounds. Have lost 20 in the past six weeks but the pizza we had last night sure was good (and cost me 2 pounds). Hope this information is useful to your dad and please let him know that we are thinking about his successes and you all are in our prayers. Please stay in touch Bunker Wed, 08 Nov 2006 00:00:00 GMT Hey Bunker thought I would remind you that I have my appoinment this Monday Nov. 20th.... Wish me good luck and keep me in your prayers. I prayer for all that are going through this dreaded disease "cancer" I hope all is continuing to go well for you. I hope I can have the same results as you did. I just started my 3rd round of Sutent on this past Monday the 13th. Am feeling pretty good now. Did you feel better on the Sutent or off? I feel better after I have been on it for about 4-5 days. My breathing gets better, I can go without the oxygen and I feel more alive. I do have the classic side effects.... sore feet, hands (hands not as bad) and mouth, but other that that I can't complain. I'm a little nervous about Monday but also can't wait hoping to hear some good news. Got to keep up my confidence....RIGHT !!!!! It is scary though. Anyone else reading this let me know how you are doing on the Sutent and what side effects you are getting. Maybe we can help each other with things that can make them a little easier. Bunker or anyone else reading this did you ever have the feet problem? If so did you find any kind of relief what-so-ever....lotions, soaking feet anything? Thanks for listening and I'll let you know how things turn out after Monday. Hopefully I will have a lot to be thankful for this Thanksgiving.... well I still do as I'm still with my family and we will almost all will be together. That's the main thing. It will be a sadder this year as my family did lose our Step father in July to cancer. We have had just too much bad this year with cancer, we're all hoping to have good news with me and I know I have my Gaurdian Angel (my Step Father) by my side to help me with some good results. Thanks again for listening and I hope everyone on this message board have a very Happy Thanksgiving !!!! Lisa Tiffany64 Sat, 18 Nov 2006 00:00:00 GMT Good morning Lisa. We've been gone this past weekend so off the computer. I hope I've caught you before your appointment to wish you good luck. I've always described my feelings before one of my doctor's visits as nervous anticipation---kind of like Christmas when we were children. Sometimes you get really really nice presnts and sometimes not so nice. You can deal with either. Confidence helps with the anticipation. I did not have foot problems but have read others that have so hopefully someone will respond with what they did to counter that side effect. I'm sorry to hear about your stepfather but it's nice to know that you keep him close in your heart. I'm sure that he will be looking over the family, both for Thanksgiving and for your appointment today. Please let me know the visit goes today. Bunker Mon, 20 Nov 2006 00:00:00 GMT Hi Bunker Well my Dr. Appt. went good yesterday. I only had X-rays done so they couldn't see the tumors as well as a CT Scan, but from what I am feeling like on the Sutent the Doctor is sure that the tumors are shrinking. My blood work must still be ok as he didn't say anything about this. I forgot to ask and have made a note for next visit in 3 weeks to make sure I ask about this. I have been back on the Sutent for a week now and am starting to feel really good again. Breathing is much better and I just feel better. My feet are starting to hurt some but not so bad. I will have more of a through visit the next time and I have to remember to write down any questions that I have so I don't forget them. All I know is the Doctor is pleased with the results and if he's pleased then so is my family and I. We plan on having a very good Thanksgiving as we have lots to be thankful for. Well I hope you and your family have a wonderful Thanksgiving and try not too eat much....lol I know I will as we have my side of the families for Lunch and my husbands side for supper. Take care and thanks for keeping me in your prayers. I will also continue to pray for everyone who is dealing with this dreaded disease. HAPPY THANKSGIVING EVERYONE !!!!!!!! Lisa Tiffany64 Tue, 21 Nov 2006 00:00:00 GMT Excellent, excellent news. This should allow you and your family to enjoy the holiday a little more relaxed. Please stay in touch. Happy Thanksgiving. Bunker Wed, 22 Nov 2006 00:00:00 GMT This is my first posting on this site, I am gratefull to all of you that have shared your experieces with this treatment in a manner that gives real life feedback. My father for whom I am writing this for is 69 years old and was diagnosed with Kindey cancer on 10/05/06. with 8.5cm tumor on the kidney spoting on the lungs and (2)3cm tumors on the liver. He just started his first cycle on sutent, along with the help of a nutrtionist on the nutrition side of things. So we hope for the best. But my reason for posting this and the updates that will follow, is because I put this message board up on the screen on the computer shortly after we found out about the cancer and my father and I read this together that day and we were both very moved by the messages posted, it put a smile on both of our faces and some hope for my father through this very difficult time. Everyone here helps a little bit in their own way by taking the time to share and help, so My father and I will do the same over the periods of his treatment for the next person , so hopefully they can benefit from it. Thank you to everyone and Happy Thanksgiving. Brave Dane Thu, 23 Nov 2006 00:00:00 GMT Bunker, Thanks for thinking of us. I am still lurking around wishing the best for all of you still on Sutent. Debbie is now on Doxil otreatment then off for three weeks, feels great and no side effects and hair is starting to come back and turn dark, blood pressure and acid reflux were gone within 2 days of being off the Sutent. Still wish we knew why is just uit working all of a sudden but will never know. She has CT scans Dec 11th and sees the Dr the next day hopefully will get some good news for a change. We are remembering all of you in our prayers and hopefully you will do the same for us. Once again thanks for careing. Will keep you posted. Don Dam555 Sat, 25 Nov 2006 00:00:00 GMT Richard, welcome to this website and to the journey. I use the word "journey" often to describe RCC. It's a long trip with ups and downs along the way. There are many great folks on this website to help with the downs and to celebrate the ups. Don't hesitate to use their experiences and knowledge. For me, I was first diagnosed with RCC in 12/04; went through two surgeries and had fantastic results with Sutent. You mentioned that your father has started Sutent treatments which is good news. You did not mention what other treatments were planned such as surgery. Most often I read that RCC patients had their kidney removed (myself included). My wife and I have learned many things about RCC and Sutent over the past two years and I would like to share some early advice. First, find a oncologist who specializes in RCC. You may have already done this---great. We found out that not all cancers are the same and not all doctors are well informed about RCC. It is fairly rare in the world of cancers. A RCC specialist is critical to your father's proper treatment and care. Second, the patient needs to take charge of their own medical decisions. By that I do not mean self doctor. What I mean is to ask a lot of questions and "make" your doctor work for you and your father. A RCC specialist has a wealth of knowledge but your father is still the "consumer". Third, we found the use of humor to be very helpful with the journey---especially on the down days. Please don't hestitate to contact us for help with questions. Bunker Mon, 27 Nov 2006 00:00:00 GMT Don, I'm so glad that you reponded. My wife and I have thought of you and Debbie often. It's encouraging that her new treatments are going smoothly and we wish you both the best for her upcoming CT scan. You have been and will continue to be in our prayers. Please send us an update next month. Bunker Mon, 27 Nov 2006 00:00:00 GMT My mother 57 was diagnosed with RCC in 9/04. She had a radical nephrectomy for her right kidney. Then in 01/05 she had two VATS (video assisted thoracic surgery) for both left and right lungs due to the discovery of nodules which were also RCC. Next this passed summer 6/06 she went through 10 sessions of radiation on her 3rd and 4th spinal cord due to the spread of the tumor and was experiencing great pain from nerve impinchments. The radiation was a failure and the Docs decided to operate on her from the neurology department to insert 4 screws and two rods to stabilize her neck (surgery was not preformed to remove any tumor due to the fact that it was located around a dense area of nerves). From then till now her condition has stabilized and her oncologist DR. Peter Wiernik from Our Lady of Mercy Hospital in NYC had decided to try out Sutent. Her first cycle started on 9/06 and now she is on her 2nd cycle ending by 12/6/06. So most likely she will receive a ct scan and her results before Christmas. I am praying for good results and also for all of you out there who are taking this drug. May God bless and we ask all this in the name of his son Jesus Christ amen. Cathy Dangerkitty214 Thu, 30 Nov 2006 00:00:00 GMT I also have RCC and had my left kidney removed in may 2002. Then it moved to my lungs. I went into the hospital in 2004 for interleukin treatments. I had 24 treatments over a three month period.While it didn't cure the cancer it did slow it down.Good friday of 2005 they found a brain tumor also caused by the RCC. They removed it and in two days I was just my old self out having fun. May of this year my lung tumors showed sigh of regrowth. This is when I started taking 50mg. of sutent once a day for 28 days with a 2 week break in between.After the second month my lungs showed an 80% improvement.But I was having strong side effects.I can tell you more about those if you like in another email.To help with those effects we cut my daily dosage down to 37.5 mgs.This seems to have really helped.I live in Edgewood,Maryland.I am about an hour and a half from Hershey. I just go to my Oncologist now but I started my treatments at Franklin Square Hospital located in Rosedale,Maryland.My Oncologist's name is Dr.William Waterfield in Belair,Maryland.You can reach his office at 410-515-6400.They are the most loving,caring group of people you will ever meet.My sutent treatment is in oral tablets. I don't know of there is any other way to take it.Please if I can be of any help in any way,email me.If you just want to chat I will be here for you both.My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I am 54 years old.May GOD Bless you both. Praz_2_him Thu, 30 Nov 2006 00:00:00 GMT Hey Praz and also those you who take Sutent what were some of your side effects? On my mother's first cycle her face was swollen, slight skin discoloration, minor rashes, and minimal sores in mouth, taste distortion, lowered white blood counts to like 1100 and fatigue. On her second cycle her white blood count was fine 4000 count, her hair began to turn a bit white, taste distortion, swollen face, but also pain on her upper shoulders and neck. She has a follow-up appointment today 12/1/06. Keep us in prayers (the Lord's mercy of healing is all to it) and I will also pray for all you fighters of RCC out there. Hope that we can all have a Merry Christmas. Dangerkitty214 Fri, 01 Dec 2006 00:00:00 GMT Hey Bunker and all who is reading this....I hope everyone is doing good and getting ready for a great time throught the holiday's. I wish everyone a Happy, Safe and Great news for the New Year. Mine is starting out great. Went to the Doctors for CAT Scan and Blood work. Things are looking good. The tumors in my lungs are shrinking and the one that was in my liver isn't detectable. I did have a few more small spots in my lungs, but the Doctor don't seemed to concerned about these. More focused on the bigger ones that are shrinking. I'm still on 50 mg of Sutent and since I don't have that bad of side effects I asked if I could be on Sutent for 5 weeks and off 1 week. He said we could give it a try so we'll see how this works. I don't have to go back for 3 months and then I will have another CAT Scan and of course blood work. Hopefully they will shrink more being off for only 1 week and not giving the tumors to much time to grow during my week off. I hope to keep getting good news and hope that everyone else gets great news also.  I want to wish eveyone a "VERY MERRY CHRISTMAS AND A GREAT HAPPY NEW YEAR"  Good luck with everyones treatments and I'll keep praying for each and everyone of you having to deal with this dreaded disease. Take care all and like I said before "MERRY CHRISTMAS AND HAPPY NEW YEAR"  Lisa Tiffany64 Wed, 13 Dec 2006 00:00:00 GMT  On 11/27/2006 Bunker wrote:Don, I'm so glad that you reponded. My wife and I have thought of you and Debbie often. It's encouraging that her new treatments are going smoothly and we wish you both the best for her upcoming CT scan. You have been and will continue to be in our prayers. Please send us an update next month. Bunker,Sorry I didn't get to you sooner but Debbie had her CT scan Dec 12th and while she still has 11 liver lesions, all have shrunk at least 50% or more, the bone masses are still shrinking and there is no sign of the cancer returning to the lungs so we did get some good from the Sutent and the Doxil appears to be working at least for the time being, next scans in Feb.  Please keep us in your thought and prayers.  Don   Dam555 Sun, 31 Dec 2006 00:00:00 GMT Dear Bunker,I first wanted to let you know Bunker, what a true friend you have been to my sister Lisa (tiffany64).  I thank you from the bottom of my heart for all the inspiration you gave to her over the past few months.  I also want to inform you that she lost her fight with RCC on January 19th.  She was doing pretty well up until Christmas.  We had a great day together and she ate a wonderful meal, probably more in that day than in several weeks combined.  But unfortunately, she developed a bladder infection the first week of January and we took her to ER and got antibiotics for that.  She was very weak and not eating.  She was very dehydrated and they gave her fluids and she felt somewhat better when she left ER but not well by any means.  The antibiotics didn't really help much and by the 13th had become very lethargic and unresponsive.  She was very stubborn and didn't want to go to the hospital.  Silly girl!  Anyway when her husband called Becky, our other sister who lives in the same town to come and try to get her up, she knew something was terribly wrong.  She called me and we arranged an ambulance to take her to the hospital she had been doctoring with.  They found she had pneumonia and that the first 24-48 hours were critical.  She fought very hard and actually lived for 6 more days.  We have lost a very special part of us and will never be the same.  I hope that you continue your fight and have a much better outcome than she did.  The only relief we have in any of this is that we don't believe she ever knew she didn't beat it.. She was unresponsive for most of those days in the hopital and hospice center.  Again, thank you for all your support with her as she wasn't one to reach out and ask for much.  She was the one to help everyone else.  I don't know if  this is how the end comes for others or not.  I believe the pneumonia is what ended her life so soon after the diagnosis, not the cancer.  The cancer was at a bad stage but the Sutent did seem to be making a difference.  Well, I will quit rambling for now.  Take care all of you who read this and God Bless You!!Kris Belstar Mon, 29 Jan 2007 00:00:00 GMT Where can you find this medication?  Sutent. Isoke Thu, 12 Apr 2007 00:00:00 GMT Where can I get this medication called Sutent? Isoke Thu, 12 Apr 2007 00:00:00 GMT