On 6/3/2009 guitarman wrote:
I was diagnosed in December with Renal Cell Carcinoma. I was told that is was stage four. The cancer had started in the left kidney and was already at 8.7 cm, It had also spread to the lungs and lymph nodes and even in some bone area around the ribs and the humorus bone in the left arm. I originally went through 14 days of radiation in the arm and was put on Sutent. It was rough and we had to adjust dosage. I had to also get a doctor to help with the side affects. The oncologist just did not seem to get into that area and I suffered till I went to CTCA in Chicago. I did Sutent for a while and lost much weight and it seemed like all I was being told was that it was stable. I then started reading about hyperthermia treatments in Germany and decided to try. I made several trips to Germany and had the treatments and everything seemed OK. The kidney tumor had shrunk for around 8.7 to 6.3 amd the nodules in the lungs were responding too. But it came to an end when the last scan showed the kidney tumor was back to its original size. I had been using Gemzar and Avastin...and when I had the whole body hyperthermia they used Carboplatin. My oncologist here seems to think that the cancer just found a way to beat what we were doing and suggests that I do not go back to Germany. She wants me to try AFINITOR and start as soon as possible. I emailed the German Oncologist and told him of the latest scan results. I sent them to him alon with my stateside doctors opinion. I am due to leave on June 7 and I told him that I would need some pretty good news from him for me to travel. I am weak and the trip is long and I go by myself and it is so hard. I think I will be starting the Afinitor soon and am acquaainted with the side affects and have some experience on fighting them. I hear the Afinitor is real new and promising. Anyone want to comment and tell me of your experiences? I am tired and I am getting things in order and do not want to feel terrible for just a short period of gain. The quality of life means something to me. If I di not have two daughters and four grandkids, I would just stop everything and slip away. I fight to be here for them, but they are so afraid that it hard for them to be around me because they know I am dying. I told them from the start that I was aware that I had just so much time and they are in denial. I worry about how they will respond to my death and just start crying. I am 56 and have had a good life and I am a Christian man and also a very loving father. I am leaving them a trust which provides them both with a home forever and close to a million in cash and assets. The trust is because I know they do not have money skills and it will give them just enough that they will still need to work to have a good life, but they sill be provided for and it will be under control so they can't blow their inheritance. I need to sell a truck and two Harleys and also the house I live in. All is paid for and they both are happy with where they live. I am closing on the townhome for the youngest daughter this week and then getting some revisions on the trust and making a few changes on the will. I am also going to plan my own funeral and get the minister. My sister had agreed to help and I am going to give her the authority to over ride the trust if it is necessary. I know at some point the girls will be able to learn how to handle money, but I am making sure they are under control till they mature..Thanks for reading and hopefully I have a few months to get this done, but if the side affects are too much, I will handle all I can and then quietly go to God.
Hi,
I read your blog and wish to share our experiences with you. My brother was diagnosed in June 2007 (at age 49) with stage 4 RCC. He had a right nephectomy and resection of veina cava at that time. He also had mets to the liver and lungs. The DR told him he had 1 year to live. We immediately started looking at all therapies available. First he tired IL2 w/o response, then Nexavar ( worked for a few months) and lastly Sutent ( which did not work). Then in all my research I found trials for Afinitor and AS1411. We were scheduled to go to OK for the afinitor trial when we discovered the AS1411 trial was open. He chose the AS1411 and that was in Nov 2008. At that time they told him he should be watching for liver failure which meant time was running out. Well, two rounds of this drug and he is still here. The doctors are sure the AS1411 has kept him on this Earth. (of course, we think God has something to do with it also). The wonderful thing about this drug is there were no side effects. How wonderful is that when you have been thru the harshest (IL2). Nexavar and Sutent were hard on him also. He is on pain meds now but still continues to garden, work on his house and dream about what he will do next. I would highly recommend checking out AS1411. We went from CA to Charleston, SC for treatment. They were wonderful. Now there are 3 locations in CA so we are transferring closer. There are locations in Kentucky, Indiana and I think MA. If you would like more details please feel free to call me at
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http://www.cancercompass.com/common/guidelines.html-- . I will be heading to my mom's tomorrow for the weekend. I would be happy to share any information I can with you or anyone else. My very best to you and your family. I know how hard this is. We lost my dad just 2 months before my brother was diagnosed. This has been so hard on my mother, as she only has two children, my brother and myself.
Please don't hesitate to call if you would like to.
Stay positive always. Janice
For more information you can also go to clinicaltrials.gov and do a search for AS1411 renal cancer, it will come up...