CancerCompass message board discussion started by Jdljdl on 3/6/2008 http://www.cancercompass.com/message-board/message/all,21710,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello My name is Joe and Im a kidney cancer survivor for the last 7 1/2 years I had every treatment you can think of   I did Interferon for a 1 1/2 yrs. I also, did Rituxan for 4 months and the High dose IL2 that didnt do  anything also Avastin for 11 months and now Im on Sutent for six cycles with a little bit of shrinkage on the first scan next scan would be on Apr4th and see the doctors on Apr 9th I did 50mg for the first cycle and it did show a shrinkage but terrible side effects . The doctors reduced it to 37.5mg and side effects been minimal.         If you would like to email me or have any questions feel free to do so..........My email is --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-- Be happy to talk to you and discuss kidney cancerthank youJoe  Jdljdl Thu, 06 Mar 2008 00:00:00 GMT Joe I just read your note and my husband also is in his 7th year as of this month,  He also has tried numerous treatments, when first diagnosed IL2 was really the only proven treatment for renal cell, maybe interferon.  He therefore was a wait and see how stable his cancer was.  For three years his lung mets remained stable by the way he did have a right nephrectomy and adrenal gland removed as well as wedge of the right lung.  He worked three years, playe golf and traveled.  Then the bone mets raised their ugly head and it has been a battle ever since. That has been 4 years.  He was on interferon alpha for 80 wks and that was in the clilnlical trial for the torisel although he didnt get the drug he now is on it and in December, tumors were stable, this was his last chance as he had already been on nexavar and sutent.  First of October he was told he had a few weeks or months to live , he is now in his six month so it shows no one predict this cancers outcome, it sure is a strange duck, but I am thankful it had not been as agressive as some renal cell cancer pts.The bone mets really have debilitated him but he still enjoys the sun coming up for another day.  So far the torisel has been very tolerable and I pray it will both stay that and also keeps the tumors at least stable because every day we buy maybe closer to a cure.   When friends ask how he is I tell him he still fighting the fight and I hope some day I can say he won the war.  Good luck to you. Dolow Thu, 06 Mar 2008 00:00:00 GMT  On 3/6/2008 Dolow wrote:Joe I just read your note and my husband also is in his 7th year as of this month,  He also has tried numerous treatments, when first diagnosed IL2 was really the only proven treatment for renal cell, maybe interferon.  He therefore was a wait and see how stable his cancer was.  For three years his lung mets remained stable by the way he did have a right nephrectomy and adrenal gland removed as well as wedge of the right lung.  He worked three years, playe golf and traveled.  Then the bone mets raised their ugly head and it has been a battle ever since. That has been 4 years.  He was on interferon alpha for 80 wks and that was in the clilnlical trial for the torisel although he didnt get the drug he now is on it and in December, tumors were stable, this was his last chance as he had already been on nexavar and sutent.  First of October he was told he had a few weeks or months to live , he is now in his six month so it shows no one predict this cancers outcome, it sure is a strange duck, but I am thankful it had not been as agressive as some renal cell cancer pts.The bone mets really have debilitated him but he still enjoys the sun coming up for another day.  So far the torisel has been very tolerable and I pray it will both stay that and also keeps the tumors at least stable because every day we buy maybe closer to a cure.   When friends ask how he is I tell him he still fighting the fight and I hope some day I can say he won the war.  Good luck to you.Dolow Hi!  congrats. on 71/2 yrs. I am celebrating 11 yrs. this month. My cancer reared it's ugly head June 07 in lymphnodes of the lungs adrenal gland and bone of left shoulder. I'm starting my 3 round of Sutent tomorrow. And yes every sunrise is another gift that's why we call it the present         Take Care Your'e in my Prayers    John jorolo1 Thu, 13 Mar 2008 00:00:00 GMT Hi Joe, thank you so much for giving me a ray of hope here!  My dad was diagnosed with renal cell cancer last May.  It was such a shock to all of us!  He had no symptoms except his leg hurt and no one thought to do an xray til we got him into an orthopaedist about 6 weeks after it began hurting!  He was treated at the university of iowa at first... they put a rod in the upper femur to stabilize it because the tumor was so large that it had nearly eaten through the entire bone.  4 weeks later, they removed the kidney.  Between the two surgeries, they did a 2 week round of radiation on the femur.  His first visit to the onc. after that didn't go over so well.  They point blank looked at him andd told him that it really didn't matter what he did, he would be gone in 12-18 months!  How can you say that to someone?  It was so devastatingly painful.  My dad is one of those people who is a goer, a doer and will make it happen if it is something he wants to happen... very driven personality.  Anyway, he looked at them and said he hoped they didn't mind if he "shopped" that diagnosis around and promptly made an appt at MD Anderson in TX under advisement from family members from the Houston area.  Any way, once he got down there, it was a whirlwind of tests and immediately they put him on Sutent and Zumata... that was July. He just finished his 9th round and made his visit to MD And.  Results are good except that they see a shadow on right upper lobe of lung...they want him back in 6 weeks for follow up.  I truly don't know what to expect from here.I have been on such a roller coaster over this last year!  Had a new baby in Jan of 07, found out my dad was sick in May of 07 and its really been up and down since!  We run our own business and my brother and I are meeting ourselves coming and going most days as he also just had a new baby 2 weeks ago and our mom (my step, his real) needs to be with dad alot!  We are both so afraid that dad won't be here long enough for our children to really remember him and that thought is just too painful!  He is a fighter and I realize that they come up with new treatments every day but really, I guess my question is this... is there hope for remission or is there only management at this point?  No one has really answered that for me.Thanks for listening!Schelly Schelly Fri, 28 Mar 2008 00:00:00 GMT I am glad to hear of some sucess. My mother was doing radiation last spring for utrein cancer when she started have kidney problems. She had her left kidney removed, the uroligist said he had removed everything, it was contained on the left kidney. She had a good summer, in September she started to have trouble breathing. In October she was told her cancer had come back and had spread to her lungs. It was so bad she couldn't walk across her apartment to the bathroom, my father had to push her in a wheelchair. The Dr. wanted to put her on Nexavar, which was not covered under OHIP (we live in Canada) and my fathers insurance company said they would not pay because it was an experimental drug. After six weeks of fighting with the insurance company she started Nexavar. In Feb. she had a CT scan which showed her lung tumors had shrunk by 50% but her kidney had grown slightly. She is going in May for another CT scan, which I am hoping will show more progress. I feel that the last year and half has been emotional, now I find it hard to just sit and wait to see if the chemo is working! I have three small children, my mother is a very big part of their lives, we try to visit her everyday. I am trying to stay positive but sometimes its hard! Everyday we get to spend with her is a blessing, we now apprisate the small things.Thanks for listening!Hope Hope55 Thu, 03 Apr 2008 00:00:00 GMT