CancerCompass message board discussion started by mammav on 3/2/2008 http://www.cancercompass.com/message-board/message/all,21564,0.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/ On Nov. 2, 2007 my husband was diagnosed w/RCC in right kidney w/mestatis to right lung. Kidney removed Dec.11, scan 4 weeks later showed progression of lung with 1 significant nodule and about 10 small ones in right and now left lung, and a few lesions in his brain.  He just completed radiation to his brain on Wed. Feb.27, and will start either Toricel or Sutent on March 12.  We meet with doc. on Fri. the 7th to tell him which drug we want, we have all of the info, but I just wanted to know if anyone had any thoughts about the drugs.  He is 51 and in great health otherwise, I am 37 and we have a 12 year old daughter and a 5 year old son.  This has obviously been a nightmare for my family and I feel like I'm going nutso trying to take care of everything and research to try and save my husband so any info is greatly appreciated.  God bless all of you in this battle, both patients and caregivers.xoxo,Mamma V mammav Sun, 02 Mar 2008 00:00:00 GMT Hello Mamma V  First off I want to say sorry to meet u this way. Although it is nice to have a place to come when you need it. My father is the one with this disease. He has been on Sutent now for about 12 months. He started with the 50mg and then had a few side effects. Hand Foot and some higher blood pressure readings. He had to stop that dose and then went to 12mg. Well he was showing good results with the 50 and then with the 12 he had some progression. He is now on 37.5mg and seems to be doing well. The disease is stable at this point.I hope you get some other input from others, However these medications affect everyone different.Do you know the type of RCC ? Clear Cell >>or one of the others? Also has he had the kidney removed? How did he know about the mets to the brain? How is he doing now? I know this is alot to handle and as long as you continue with being informed things will seem a little less stressful. I will answer any questions  I can. You can always reply with a private message if need be.A/F  lilsis  lilsislovesdad Sun, 02 Mar 2008 00:00:00 GMT  On 3/2/2008 lilsislovesdad wrote:Hello Mamma V  First off I want to say sorry to meet u this way. Although it is nice to have a place to come when you need it. My father is the one with this disease. He has been on Sutent now for about 12 months. He started with the 50mg and then had a few side effects. Hand Foot and some higher blood pressure readings. He had to stop that dose and then went to 12mg. Well he was showing good results with the 50 and then with the 12 he had some progression. He is now on 37.5mg and seems to be doing well. The disease is stable at this point.I hope you get some other input from others, However these medications affect everyone different.Do you know the type of RCC ? Clear Cell >>or one of the others? Also has he had the kidney removed? How did he know about the mets to the brain? How is he doing now? I know this is alot to handle and as long as you continue with being informed things will seem a little less stressful. I will answer any questions  I can. You can always reply with a private message if need be.A/F  lilsis  Sorry I see now he did have his kidney removed. Wow alot going on in a short amount of time. lilsislovesdad Sun, 02 Mar 2008 00:00:00 GMT Torisel is usually the drug of choice with lung mets, it is considered the Big Guns for lungs. knowledgeispower Mon, 03 Mar 2008 00:00:00 GMT There is an email support list specific to kidney cancer, where you will find many who have taken Toricel. See http://cancerguide.org/kofaq/ to join or for more information. Trishpm Wed, 05 Mar 2008 00:00:00 GMT Please go to clinicaltrials.gov and read this articlehttp://www.biospace.com/news_story.aspx?NewsEntityId=87548 there are lots of things to choose from and lots of hope for the future. My best to you-tagml Tagml Thu, 06 Mar 2008 00:00:00 GMT My mother was just diagnosed in late January, Stage IV with mets to both lungs and pelvic bone.  Her doctor consulted with MD Anderson and they recommended Torisel.  I also brought her to a specialist here in Dallas and he also recommended Torisel.  It seems to be the best against metastatic RCC.  However, it's still relatively new and there isn't a lot of information about it.  I will say Torisel side effects seem to to much less than that of Sutent.  My Mom has done pretty well, mostly fatigue and anemia.  Hopefully your oncologist will have a recommendation for your husband.Good Luck TexasLil Mon, 10 Mar 2008 00:00:00 GMT MamaV,  I did 2 rounds of Sutent but it didn"t seem to help. Now my Dr wants to try Torisel. Wish your hubby the best. Would be intrested in knowing which med  he takes & results Keep Fighting   John jorolo1 Tue, 11 Mar 2008 00:00:00 GMT I am so sorry for what you and your family is going through. My husband was dx in Dec. 2005. We have 3 children 18, 10, and 9. It is very tough on them. He has had 3 brain surgeries, a lung surgery and a kidney removal. He is now taking Sutent for a very small spot in his lung. He does not feel well at all while on Sutent. Mostly, he has upset stomach, indigestion and fatigue. However, his spot has not grown as of last scan.I will keep your family in my prayers.Best Wishes,Kim Kim p Mon, 17 Mar 2008 00:00:00 GMT thank you so much for your prayers and info.  We have decided on torisel for now, and he starts treatments Wednesday.  I just hope he does well.  Good Luck to you, my thoughts and prayers are with you.Mamma V mammav Mon, 17 Mar 2008 00:00:00 GMT  On 3/17/2008 mammav wrote:thank you so much for your prayers and info.  We have decided on torisel for now, and he starts treatments Wednesday.  I just hope he does well.  Good Luck to you, my thoughts and prayers are with you.Mamma VHi! Mamma V,    Just an update on my treatment since the last time I thought the Sutent wasn't working. It appears the Sutent  is keeping everything stable, one tumor accually shrank 2mm. The dr said to keep on the same track and get as much milage as we can before we switch to something else.How is your husband doing on Torisel? Any side effects? Would be interested since that may be the next treatment for me. Take Care & May God Bless you both       John jorolo1 Sun, 30 Mar 2008 00:00:00 GMT Well may God bless your husband and all. For renal cell carcinoma you should try sutent after consulting your doc.I have completed 2nd cycle of sutent and am feeling ok my mets have shown regression. rajasaju Tue, 15 Apr 2008 00:00:00 GMT