CancerCompass message board discussion started by Maryinwis on 8/21/2007 http://www.cancercompass.com/message-board/message/all,15485,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,I am Mary from Wisconsin.  I posted my story back in June -- "7 Year RCC Survivor - Sutent, The Miracle Pill", and have had such terrific response.  However, it was hard to track who I was talking to and what message I was replying to.  I have asked other RCC patients who are on oral chemotherapy drugs (Nexavar or Sutent) if they would be interested in doing a more up close and personal group via e-mail to share current treatments, results, new information or items of interest, side effects, and generally support each other. We already share the same illness and the same treatment.  It is so easy to talk to each other, because we already know exactly what each of us is going through.There are already 19 in this group (from 5 different countries).  I gather the basic information and messages .... then I send a daily "group" message with any new individual messages they have sent to me.  We have been together about 2 months now, and we talk to each other daily.  Everyone in the group has absolutely loved this format, and we all have that common bond.There are some recently diagnosed people who are really scared and looking to anyone for help.  I think it is important for those people to talk to some of us long term survivors to give them hope.  If you are interested, please reply.  I will then do a personal reply to you to give you the e-mail information. A year ago, there were no success stories like there are now.  People like Bunker and others have inspired me to do this (who, by the way, is in our group).  Here are just a few quotes from some of the group:"What fantastic therapy this is, beats any psychologists." --- "We are fortunate to find a group of friends to laugh, cry, worry, pray, and celebrate with." --- "It is incredible how close we have all become after such a short time and, like others, I wait to see your email with your daily newsletter." --- "Thanks everyone for all the support and suggestions during my decision making on finding a new physician." --- "Thank you for always going a step beyond to help all of us each time you put a new posting on." --- "Thanks for starting this group and thanks to everyone else for joining in."Hope to hear from you ........ Mary in Wisconsin Maryinwis Tue, 21 Aug 2007 00:00:00 GMT I would love to. I have so many questions. Just let me know.   Edie Tanks Tue, 21 Aug 2007 00:00:00 GMT Hi Mary.  Jeff S from PA.  Count me in.  Thank you. Jeff S Wed, 22 Aug 2007 00:00:00 GMT  On 8/21/2007 Maryinwis wrote:Hello,I am Mary from Wisconsin.  I posted my story back in June -- "7 Year RCC Survivor - Sutent, The Miracle Pill", and have had such terrific response.  However, it was hard to track who I was talking to and what message I was replying to.  I have asked other RCC patients who are on oral chemotherapy drugs (Nexavar or Sutent) if they would be interested in doing a more up close and personal group via e-mail to share current treatments, results, new information or items of interest, side effects, and generally support each other. We already share the same illness and the same treatment.  It is so easy to talk to each other, because we already know exactly what each of us is going through.There are already 19 in this group (from 5 different countries).  I gather the basic information and messages .... then I send a daily "group" message with any new individual messages they have sent to me.  We have been together about 2 months now, and we talk to each other daily.  Everyone in the group has absolutely loved this format, and we all have that common bond.There are some recently diagnosed people who are really scared and looking to anyone for help.  I think it is important for those people to talk to some of us long term survivors to give them hope.  If you are interested, please reply.  I will then do a personal reply to you to give you the e-mail information. A year ago, there were no success stories like there are now.  People like Bunker and others have inspired me to do this (who, by the way, is in our group).  Here are just a few quotes from some of the group:"What fantastic therapy this is, beats any psychologists." --- "We are fortunate to find a group of friends to laugh, cry, worry, pray, and celebrate with." --- "It is incredible how close we have all become after such a short time and, like others, I wait to see your email with your daily newsletter." --- "Thanks everyone for all the support and suggestions during my decision making on finding a new physician." --- "Thank you for always going a step beyond to help all of us each time you put a new posting on." --- "Thanks for starting this group and thanks to everyone else for joining in."Hope to hear from you ........ Mary in WisconsinHi Adrian from Bournemouth in the UK please count me in adrian00 Thu, 23 Aug 2007 00:00:00 GMT Hi, my name is Charlene and I'm new to the group.  I'm interested in this group because my fiance has RCC and is currently taking Sutent.  He started last July on Sutent and although he has had and still has terrible side effects Sutent is working.  After they removed his right kidney he was later diagnosed with tumors on his liver, spine and one is his upper chest.  Since being on Sutent the tumor on his liver and spine are gone and the one on is upper chest is so very small.  This is all good but he still has terrible side effects and is in so much pain from the medication.  His feet are so sore and blistery that he can't walk for a while also his hands are the same way.  He sometimes gets blood from his mouth and worst of all, just when those side effects go away his testicals break out in a terrible rash and he's miserable.  He's now taking Vitamin B which helps with his hands and feet (at least the effects don't seem to last as long) but we can't think of anything for the testical rash.  Any suggestions would be welcome.   Please respond ASAP with any thoughts. katrayle Fri, 24 Aug 2007 00:00:00 GMT Please include me too Joe from PA Joeyfromerie Tue, 28 Aug 2007 00:00:00 GMT Hi Mary I am Melissa from NJ and would love to join your group.  I think it is truly amazing how your a 7 year survivor, I am in awe and I am inspired.  runningragged Wed, 29 Aug 2007 00:00:00 GMT Hi Mary...This sounds sooooo good.  Please include me.I was on Sutent from June 2005 through early August 2006. When diagnosed I had an 11 cm tumor in my left kidney, which was surgically removed, and 4 mets in the lungs.  Now I have a residual something that is 2mm in one lung, but it seems the the M.D.s think it may well be dead tissue or scarring.  Zelda--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Captain z Thu, 30 Aug 2007 00:00:00 GMT  On 8/30/2007 Captain z wrote:Hi Mary...This sounds sooooo good.  Please include me.I was on Sutent from June 2005 through early August 2006. When diagnosed I had an 11 cm tumor in my left kidney, which was surgically removed, and 4 mets in the lungs.  Now I have a residual something that is 2mm in one lung, but it seems the the M.D.s think it may well be dead tissue or scarring.  Zelda--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Hi this is harley boy from Pa. and his partner--he has had rcc since 2003--right kidney removed and went well for 3 yrs. then found a lymph node behind good kidney was rcc--on sutent  for 5 rounds then it weakened his heart so that it was only pumping 38% so they had him stop and in the 3 mos he quit he now has mets in his lungs a new node in aorta caval region that is 3cm--it really grew  his heart is back to pumping 45% but onc. didn't know if he should go back  on sutent but it did so well--it got rid of a 17mm lung met and other small ones and reduced the bif node down to nothing or at least it isn't showing up on the catscan--he had lots of side effects but none that he can't live with--so they had him try Nexavar--and in 9 days he had broken out in a terrible rash--his scalp was burning and itching--now it is all over his body and he has flushing and body aches--all in  9 days--so he has to stop the Nexavar for 5-10days to let it calm down the rash---we don't know what to do now --he wants to go back on sutent but not sure if his heart can take it--there are 2 other new ones that we have read about but are still checking for more info--we would like to join your group--thank you--Jim and sue in Pa. harley boy Fri, 31 Aug 2007 00:00:00 GMT Hi Mary,I had kidney cancer in 2003 and they removed my kidney. Six months later it spread to my lymph nodes in my neck and I went through IL2 treatments. I was in remission for 4 years till it spread again to my lung. I have been on Sutent for 2 sessions so far. I am really very healthy otherwise but this Sutent is so hard. Next week I go for my scans and am praying we see an improvment in the growth of the tumors. Any comments from supporters taking Sutent would be appreciated. Thank You,Marilyn  Arizona Marilyn Mon, 03 Sep 2007 00:00:00 GMT Hi Mary,My husband has advanced MRCC and I am constantly trying to learn as much as I can.  Do you know of survivors that had it spread throughout the lymph nodes?  We are getting bad vibes from all doctors.  I am interested in this group and hope I can pass his survival story to others later down the road.Jeff's girl Jeff's girl Mon, 03 Sep 2007 00:00:00 GMT Hi Mary, I would love to join your group!  Great idea!Debbie Mikeswife Tue, 18 Sep 2007 00:00:00 GMT Hi Mary, I would like to join the group.  I have taken two rounds of Sutent.  I am very encouraged by the results of my CT scan this week, showing 15-20% shrinkage.  Starting back on Sutent again on May 9.   Sharon from Missouri ssbrnrd Fri, 02 May 2008 00:00:00 GMT