Renal cell carcinoma

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 was diagnosed in December 2007 with RCC and mets on my lungs and a large tumour 5.6cm on my left ankle which ment I had to use crutches to get around. I was put onto Interferon for 4 months and after about a month I could feel the tumour in my ankle reducing in size and the following CT scans showed the tumour on my kidneys and those on my lungs all reducing in size. I did loose about 2 stone in weight and have flu like symptons whilst on Interferon but the side effects did reduce.

After the 4 months I was not given any medication but the tumours continued to reduce in size. The tumour in my ankle had reduced so I could walk normally.

At the end of January this year I had my left kidney removed and the biopsey showed the tumour had been completely destroyed. Last month I had my first CT scan since the operation and the main tumour on my lung had continued to reduce and the other had shown a minor increase 0.3mm which was probably only a measuring error. 

My situation is now what they call Stable Disease so although I have tumours they are not increasing so I will need to go for a CT scan every 3 months to monior them.

I am 48 years old single without children which I feel has made it easier to face the challenge because I do not have anyone dependant on me. I have found it important to keep working as much as possible to avoid thinking about the situation to much and I have been lucky to have support from family and friends. 

Steve

Thanks Steve, It is remarkable how so many different people respond so differently to the treatments. Keep in touch

Hello

I was diagnosed with RCC in October 2003 and had my Nefrectomy a week later. All was well until 2007 when a nodule on the right lung appeared and hot spots in both adrenal glands. Subsequently I had a Lobectomy but sadly there was no cancer, so a hugh operation for no reason. Since then in December 2008 the nodule in the right adrenal gland grew. I had the adrenal gland removed in January 2009. Now keeping everything crossed.

Regards

Beth

Afinitor is a promising treatment, and if I were in your position, I would try it.

It sounds like you are being very realistic.  None of us (healthy or not) know how long we have on this earth; those of us with advanced cancer have a slightly better idea of how we might die, but only God knows for sure.  I believe that everyone should always be prepared for death, and live each day as if it were our last, even if we are healthy. 

Guitarman -

 While it is good to "get your house in order", do not give in to the beast, vow to fight it!  There are so many developments in the treatment of mRCC these days!  There is always room for hope, especially when your symptoms are not debilitating.  My wife was on Sutent for over a year, and has now chosen a clinical trial of Pazopanib over going on everolimus (Afinitor), so that if the Pazopanib fails, the everolimus, as well as Torisil, Nexavar & who knows what in the futrure, will be there to try.  She has seen the last of the graduations & is now planning to be there for the weddings and, hopefully, another grandchild & more in the future.  We are taking a class on new developments in medicine & it is amazing how much is going on, especially re mRCC. Cultivate those relationships which make life worthwhile, for us, that starts w/ the One who is Love.

I was diagnosed july 2003 and had kidney removed.  I was clear for 5 years. July 2008 I was involved in a head on auto accident and broke my back and had to learn to walk once again. In November 2008 I went for 5 year all clear visit but I now have a large tumor in my para trachea area. I just want to reinterate how important that everyone have their life in order because you never know when you may be taken unexpectantly. None of us should have survived our wreck and we are all still here with our love ones. Get in affairs in order but not just because of cancer, do it because you love you love ones and want to take care of them always. I agree do not let cancer take over your life. I believe that God would not have let me live through the wreck if he didn't have a plan. Remember there are always someone else in worse shape than you are so get positive. Anyone with this illness is in my prayers

 

On 6/4/2009 stgooch wrote:

Guitarman -

 While it is good to "get your house in order", do not give in to the beast, vow to fight it!  There are so many developments in the treatment of mRCC these days!  There is always room for hope, especially when your symptoms are not debilitating.  My wife was on Sutent for over a year, and has now chosen a clinical trial of Pazopanib over going on everolimus (Afinitor), so that if the Pazopanib fails, the everolimus, as well as Torisil, Nexavar & who knows what in the futrure, will be there to try.  She has seen the last of the graduations & is now planning to be there for the weddings and, hopefully, another grandchild & more in the future.  We are taking a class on new developments in medicine & it is amazing how much is going on, especially re mRCC. Cultivate those relationships which make life worthwhile, for us, that starts w/ the One who is Love.

Thanks for your response. I see that it looks like I was diagnosed with the disease early in December of 2007. I fought it since Jan 2008, and here we are in June of 2009. I am sure not a quitter, but will continue to fight. I was very excited that the treatments in Germany went well, but then the tumor(the one on the kidney started growing back, I had it down to a 6,2 and last scan shows 8.5 and that is why I am trying the afinitor.

Thanks for the part about getting your life in order. I have placed myself in God's capable hands and will go where he leads.

Thanks for the part about getting your life in order. I have placed myself in God's capable hands and will go where he leads.