CancerCompass message board discussion started by Virbeana on 8/16/2006 http://www.cancercompass.com/message-board/message/all,6470,0.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/ My Dad has been diagnosed with renal cell cancer. Hospice has been brought in to my parent's home. The cancer has spread through out his body, including his brain causing loss of right side of his body. He has had the gamma knife done in June. He is getting use of his right arm and right leg back and talking more. I'm really happy about the talking. Not being able to communicate was really difficult. Now I can tell him I Love him and he tells me I Love you back. I've read many inspiring stories and we are always praying for a miracle and Gods will. But I want to know the hard part. I want to know What's going happen if he doesn't get better. I've read through the hospice information letting us know what to expect. However it is very vague. I want to know what to expect. How bad is this going to get. How much pain is he going to go through? How do we help him? I want to know the stuff no one talks about. Will he not know who I am one day? Will he have to wear adult dippers? Any survivors with tips on what's annoying and what is helpful? Any information is greatly appreciated. Virbeana Wed, 16 Aug 2006 00:00:00 GMT It's tough to answer your question completely since individuals vary and I don't know your father's history---what type of RCC; what stage is his cancer; his age; his overall general health; his attitude; his support structure; and his medical treatment today. However, as a kidney cancer participant/survivor I can offer some recommendations. First and foremost, find an oncologist that specializes in renal cell carcenoma. We discovered that cancers are not all the same and that not all oncologists understand RCC. You may have already done this but if not please do it immediately. We have been told that RRC is an agressive form of cancer and time is not your friend. Second, take charge as best you can. This means asking alot of questions and continue to push for answers. In the not too distant past there were not a lot of options for RCC patients especially if it was not found early. However, today there are new treatments and drugs that have had wonderful results. Nexavar from Bayer is one and Sutent by Pfizer is another. I myself used Sutent and have had unbelieveable results. There are many success stories on the Message Board under Renal or Kidney (mine included). One common point through all of these success stories is that the patient took an active role. I have also talked to some who were told by doctors that there was nothing to be done---not true. You've probably gathered by now that I'm not the type of person just to sit back and wait. When I first learned of my cancer I took the attitude---Hope for the Best but Plan for the Worse. All of my comments so far are under the grouping "hope for the best". My belief is to take charge. For the other part "plan for the worse", I have some opinions but not much experience. I believe hospice can relate to you what happens in many cases. How your dad responds may differ. Personally, I would cherish every moment; use appropriate humor to lighten the atmosphere; and depend on friends/family for suport. Certainly be open with your fathr and encourage him to do the same. Please keep in mind though that there are new options today. If I had gotten RCC two years ago I probably would not be writing you today. Please don't hestitate to contact me again if you have additional questions and find my ramblings valuable. Good luck to you and your father. Bunker Thu, 17 Aug 2006 00:00:00 GMT I was diagnosed with a metastatic RCC in the lungs. I was put on Nexavar and after my last CT-Scan, my tumors were shrinking. My problem is with side effects with my feet. Every cancer patient at one time or another be faced with side effects. Happy Tue, 29 Aug 2006 00:00:00 GMT Do you want the truth? My Father passed away 1-06-06. Renal cell cancer. He was in a great deal of pain the last 3 months. Morphine around the clock. Some people can find that they can not handle it. Try not to think about yourself. This the first and last time that your Dad really needs YOU. Hospice will be a big help. MyFather passed away in a hospital bed set up in my living room. Washed,cleaned him.I did for my Dad. If I can do it so can you. Please Pray and be Strong. bigdog Bigdog Tue, 14 Nov 2006 00:00:00 GMT Thanks for the message. Alot has happened since I posted my message. We do everything for him now and he's on morphine around the clock. He sleeps most of the time. I go and see him as much as possible. He's told my mom it won't be long and he doesn't think he'll make it til Thanksgiving. We're all getting though this with each others help. He still laughs with us and we all enjoy that. Thanks again for your post. Virbeana Tue, 14 Nov 2006 00:00:00 GMT Is your Father at home? My Dad wanted to be with Me and my Wife. We live in the country. He really liked it. At first he did not want us to see him like he was.After all the hospital stays he wanted to be at home with us. He passed away in peace with his family next to him. I have a great deal of respect for people that take care of their loved ones. YOU are special. I cracked a rib deer hunting last tuesday.went to the er.they did a ct scan. They found a mass on my left kidney. Have to have another CT. I am preety sure it will be cancer. It runs in my Family. Please take care.I will be here for you. Bigdog Wed, 15 Nov 2006 00:00:00 GMT Yes my Dad was at home. This is where he wanted to be. He passed away Saturday night. It was actually the most peaceful moment I've ever experienced. There was no pain no last gasp for air. He was sleeping and that was it. My Mom was with him so he didn't die alone. Of course my brothers and I came running as soon as we got the call. We are all getting thru this okay for now. We got our chance to sit with him for awhile before the funeral home showed up. It was as peaceful as it could have been. The funeral wont be until afer Thanksgiving so next week I'm sure will be hard. Right now we are keeping busy with the preperations. Thank you so much for responding to my post I really appreciate it. It's nice to know there are people out there like you, willing to help where they can. Joann Virbeana Tue, 21 Nov 2006 00:00:00 GMT