Average Rating:Rating
Rate this Discussion: rate!

My Wife

Switch to Single View
Records 1-2 of 2
Caregiver
Caregiver
Forangela
Recommend this Message
Subject: my Wife
Date: 10/10/2006
My wife has stage IV RCC-is currently on dialysis-mets to hip,rib,spine,skull. She went on a clinical trial at Sloan..now they found a couple of lymph nodes that seem positive..Onc stated he wanted her to do more chemo..is it worth it? I get so many mixed answers..like people who have survived with stageiv for years..but have had one surgery after another. I have two small children and am scared. No one even states the prognosis...Should she live what may be the last days of her life making herself sick?
Subject: my Wife
Date: 10/11/2006
First and foremost, my heart goes out to your wife, you and your children. You all have started on a journey that no one wants to take. I can speak from experience because I too was diagnosed with RCC Stage IV in 12/2004 with mets to my liver. I am also an example of how far the medical field has come in dealing with RCC the past few years. After undergoing treatment, I have been tumor free for 6 months. Sloan has a good reputation but I'm not personally fimilar with that hospital. My treatments were done at the University of Minnesota Hospitals in Minneapolis. (I'll describe my treatments later) The three most important pieces of advice that I can offer are: 1) find an oncologist that specializes in RCC. We found out that not all cancers are the same and not all oncologists are fimilar with RCC. For example, you mentioned "more chemo". My wife and I are not doctors but we have been told by many doctors and we have read many articles that state---chemo and radiation are not effective against RCC. You mentioned that your wife is on a clinical trial---what type of trial? 2) Take charge of your wife's treatment. By that I mean ask a lot of questions and ask your oncologist what he/she would do if they were the one with RCC. So many times I hear from people who feel that their doctor is being too reactive---you can and should challenge your doctor. My wife asked MANY questions. They may be the expert but you all are the "customer". 3) Never give up hope and develop a positive mindset---this helped us tremendously. You also mentioned "having one surgery after another". This leads me to my treatment story. Surgery use to be the main form of treatment for RCC and I believe is still preferred when caught early (ie. no mets). However, after having one kidney removed and a second operation to remove part of my liver we were ready for a more proactive approach. We did not want to wait for the next metastase and more surgery. Our thought (mind you not being doctors) was based on logic and went like this---if the bloodstream fed the cancer why wouldn't it make sense that the cancer (cells) could move about the body via the same bloodstream? We wanted something that would treat the entire body and be proactive. This led us to a trial study at the U of M. with Sutent (made by Pfizer). It is a pill and usually taken at a dosage of 50 or 37.5 mg per day. Long story short--after 6 treatments cycles (a treatment cycle is 28 days on/14 days off) I was considered a "complete response" by my doctor. After the first treatment alone my tumors were reduced 34% in size!! I have not had any signs of cancer for 6 months and I've been off of Sutent for 4 months. By the way Sutent was approved by the FDA in Feb. 2006. There are side effects--mostly flu-like; fatigue; changes in taste; skin rashes----and vary depending on the patient and the dosage. My experience is that the side effects go away quickly after Sutent is stopped. My doctor has told us of many patients who have had fantastic results with Sutent and there are many success stories posted on this wedsite (including mine). Just go to Message Board--either Kidney or Renal as both are used--and look for references to Sutent. There is another drug called Nexavar (made by Bayer and also approved by the FDA) that has had similar results but our experience has been with Sutent. Please ask/challenge your doctor on these other treatments. Please stay in touch and if I can answer other questions or somehow help you on your journey please don't hesitate to ask. I should warn you though that I have a warped sense of humor---this also helped me greatly along my trip.
Records 1-2 of 2
Switch to Single View
close




Sending...
Required Fields All fields are required.
close
User is No longer Ignored
Show messages from this user
close
Report Abuse
Anonymous Note to Administrator:

Reporting
Latest Messages Show More
RE: maple sugar and bicar Posted by Arnold on 09/06 06:34:29 PM
RE: surgery & clr diag. c Posted by gretchcaz on 09/06 06:33:43 PM
my mother Posted by kimbaly on 09/06 06:28:32 PM
RE: Whats next??? Posted by Bubus on 09/06 06:27:30 PM
RE: Father diagnosed with Posted by mam1563 on 09/06 06:24:44 PM
how long do most liver ca Posted by cest21 on 09/06 06:19:02 PM
RE: Cone Biospey to Be do Posted by Tashacar21 on 09/06 06:18:18 PM
RE: maple sugar and bicar Posted by Arnold on 09/06 06:18:04 PM
RE: my dad has cancer hel Posted by cest21 on 09/06 06:15:49 PM
RE: maple sugar and bicar Posted by Shemay on 09/06 06:09:22 PM
RE: mother has lymphoma a Posted by daybyday on 09/06 06:05:27 PM
Cancer - 3D Medical Animation