CancerCompass message board discussion started by Janice Marie on 5/3/2008 http://www.cancercompass.com/message-board/message/all,23701,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother Johnny, age 60, shed this earthly vessel and lives on, March 10, 2008, at 1:45 a.m. and I was there beside him.  He lost the use of his legs and just gave up hope because he couldn't walk.  It was an inspiration to me watching him so bravely carry this burden to the end without one "Why me?" or "It just isn't fair, I have so much more life to live."  He never spoke a discouraging word to any of this family.  Well, on to the real story behind his 10 month survival.  The sutent did it's job.  Before he died, the CT scan was as clear as if it were a healthy skeletal system.  It was amazing to look at it and think there is hope after all.  But, the catch to this is, Sutent doesn't attack the soft tissue.  The cancer finally invaded most of his soft tissue and organs and there was nothing to do but watch him, day by day worsen and his lungs finally fill with fluid to their capacity and smother out this brave soldier's battle.  There is much research to be done to formulate a treatment which will also attack the cancer cells in those organs and soft tissuealong with the bones.  My brother survived Vietnam in 1966-1969 and I attribute his renal cell carcinoma to the dioxin and other chemical exposure while he was in Pleiku, 119th Helicopter Assault Company, the fighting "Crocs" and "Gators".  There were complications from diabetes mellitis type II associated with his illness which the government acknowledges as a presumptive and awarded him 20% disability 3 months before his death.  These chemicals lay in wait in the kidneys which cannot process them, and I am still trying to get the Department of Defense to acknowledge the incubation period for these exposures is just now arriving in most Vietnam Vetrans who are afflicted with one or more forms of illnesses associated with the spraying.  So, if you are a Vetran, do not give up.  I hope and pray that hypertension, diabetes Type II and kidney cancer will be a thing of the past.  I wish each and every one of you out there the greatest of success with your treatment and encourage you not to give up because you feel hopeless.  Help is on the horizon.  God be with you and keep you during your journey through this earth age.  Soon we all will reach our destination, our Father. Janice Marie Sat, 03 May 2008 00:00:00 GMT Please accept my sincere condolences for your brother. it sounds like you were with him all the way,  I pray that you will have God-given grace in the days ahead.  Your post has me somewhat confused though.  You said his CT scan were clear but the cancer doesn't work on soft tissue.  I don' t understand..  I am a Sutent user and I thought that it worked on all tumors other that brain mets.  Maybe you can clarify when you are up to it.  Again, I express my sympathy.  I have an older brother whom I love dearly.  It wuld be hard to watch him go through this.  Blessings, Robbie Robbie2 Sat, 03 May 2008 00:00:00 GMT Thank you for your kindness Robbie2 and I apologize for any confusion.  I will try to explain as best I can.  The oncologist said the sutent was not designed to attack soft tissue invasions of the body.  The renal cell carcinoma matastisized to his brain, liver, lungs, etc.  The lesions in his bones were completely gone when he had his last MRI and CT.  A cyber-knife procedure was done on the brain and skull, but we will never know the success because he had not had his follow up scan.  All I know is what the oncologist told us and the film I viewed which did not indicate there had ever been a single cancer lesion there.  The sutent dosage was 50 mg.  The highest dosage his oncologist had ever given any of his patients and Johnny was able to tolerate it rather well.  In Johnny's case the Sutent did attack small lesions in his lungs, but my guess was that there were so many that the pill could not control all of them.  You may be able to do a further inquiry by discussing this with your oncologist.  See what their opinion about this is.  I would not want to take away anyones hope for the best results.  I wish you the very best.  I have read some great success stories about this life giving treatment.   I would be interested in what your oncologist tells you because each case is specific as to the outcome.   Until we talk again, God bless you and keep you. Janice Marie Sun, 04 May 2008 00:00:00 GMT Janice Marie -Thank you for the helpful information.I am sorry you lost your brother.  Hesounds like he was a fighter. My wife had her kidney out 3 years ago in January.  She now has mRCC, w/ lesions in the liver & lungs.  She is on her 2d "holiday" from a 28/14 day regimen of Sutent, 50 mg for the 2 cycles & now is going to be reduced to 37.5 mg to see if it works as well (a CT scan near the end of the 2d 28 days on showed some shrinkage of the lesions) but w/ more tolerable side effects.  I saw a post somewhere on this site recommending not to go less than 50 mg if at all possible, but our oncologist recommended the change & it is hard to go against the expert. Did your brother take Sutent?  How long was he on it?  What else did he try? God bless you, and all of  us dealing w/ this disease.   stgooch Thu, 15 May 2008 00:00:00 GMT Hello stgooch,First let me say that you and your wife have been blessed in terms of years of survival instead of months.  Trust your oncologist to care for you.  He has so many resources available to him that you are not aware of.  He sees what works in all of his patients, whereas you only see it in your wife.  He has channels from others in the medical field as well as medical journals and research foundations, and it goes on and on.  Don't let other peoples experiences frighten you.  Keep your objectiveness about your wife's diagnosis, prognosis and treatment.  Johnny(60) was on Sutent from the very beginning and continued on it until his untimely death.  Also 50mg.  The side effects were many, but he tolerated it until he lost the use of his legs and the doctors could find no medical reason for this phenomenon.  He was so weak he could not get out of the chair.  (6'4" and 260 lbs.)  My brother had a host of problems he had to battle such as diabetes, type II mellitis, hypertension, hypoglycemia.  His potassium and calcium levels either skyrocketed or plummeted.  He had numerous infusions. Only during the last 2-3 months did they seem to come under control.  His appetite did a 360 after the cancer.  Anything sweet or anything salty.  Does your wife have a different appetite?  Does she have diabetes or hypertension?  Is it identifiable in the bone or just soft tissue? Johnny's other metasties had shown evidence of shrinkage and gave us enormous hope that he would beat this disease.  Our mother was a 15 year breast cancer surviver.  Our youngest sister (50) was a 13 month survivor of non small cell lung cancer.  It sounds like your wife's cancer would be treatable simply because it is only located in her lungs and liver.  Stay strong because you have to do it for her and yourself and any children you might have.  There are so many success stories out there, do not be discouraged because someone else's circumstance was not successful.  Trust your oncologist and trust God for His Will will ultimately be carried out, it is in His hands.  I know Johnny is healed and walking with our sister, mother and father.  Try not to let information overwhelm you.  I know for a fact that too much information can overload your brain and dim your outlook.  Your wife truly has a friend in you and is blessed to have you as her caregiver.  Please keep me posted and let me know how she is doing.  You are a brave and honorable man to take care of her "in sickness and in health until"  She will gain strength from that alone.  God Bless all who will read this message. Janice Marie Fri, 16 May 2008 00:00:00 GMT Janice Marie - Thank you for the wonderful response & for the good advise.  We are blessed by God & by modern medicine, and they are not mutually exclusive.  My wife's most recent CT showed the lesions to have shrunk somewhat.  She is over 1/2 way thru her 3d cycle on Sutent, and the oncologist has reduced the dosage from 50 to 37.5 mg/day b/c of the side effects.  We are bless in that one of our sons will be starting the 4th year of a 5 year residency in urology next month; he is a rich source of information and support.God bless you and all who struggle w/ cancer & its aftermath. stgooch Wed, 11 Jun 2008 00:00:00 GMT I am with Sutent for more than 2 years (since May 2006). I have mRCC for more than 3 years, I went thru surgery in the spine April 05 and after I had six monthly cycles with IL and IFN. Sutent Side effects are increasing, but I still can resist, nodes do not decrease but are contained since the beginning of the treatment with Sutent, this was not the case with IL-2 and IFN. Sutent treatment is 28/14 days, 50mg. My doctor despite side effects insists in no decreassing to 37.5mg until a clear alarm from test labs or other evident sign of deterioration. juan Mon, 04 Aug 2008 00:00:00 GMT WOW! over 2 years on Sutent & no progression!  that is exciting, God bless your journey.  My wife just finished her 3d round of Sutent, but this on on a 37.5 mg/day dosage.  She tolerated it better than 50 mg/day.  She will have a CT & bone scan on tomorrow & we will get the results on 08-11 & I will try to update this message when we get the good news that there has been no progression, maybe even further shrinkage.  Pax. stgooch Mon, 04 Aug 2008 00:00:00 GMT