Advice/Information needed

I don't know where else to turn for advice, so I am hoping someone here can help me.   My husband was diagnosed with renal cancer two years ago.  We were told it was confined to a cyst in the kidney and a partial nephrectomy was done.  When they biopsed the surrounding tissue, cancer cells were found.  There was a chance that they got it all, so they were going to monitor my husband with quarterly PET scans.  The first was clean.  The second (6 months after the surgery) lit up spots in the lymph nodes near the kidney, the hip and throat.

He was treated with Torisel, which didn't work.  He lost his voice.  The tumor in the throat was removed.  His voice came back.  He started walking with a limp, and was put on Nexavar.  A bunch of bad side effects, and the Nexavar didn't work.  Tumor in the throat grew back and the limp got worse, not to mention the pain.

 Next treatment, radiation on the throat and hip.  The voice came back but the limp got worse.  Then he needed either a cane or walker depending on whether he was having a good day or a bad one. 

After the radiation, he was started on Sutent.  The Sutent didn't work.  The tumor in the throat is back.  The hip pain has gotten worse and now he has a tumor in his elbow. As well as some spots in his lungs.

He is on a pain patch as well as dilaudid for the pain.  He is going to start Afinitor this week (as soon as the drug comes in).

 My questions:  What can we expect in the future?  Life expectancy?  Pain?  Anything you can tell me?

Thanks for listening...

 

I have been through the same rollercoaster of failed treatments, Sutent, Gemzar, Taxotere  and I am now on Torisel. Affinator by Novartis works on the same pathways as Torisel. That is not to say that it is doomed to fail like Torisel. Sutent and Nexavar are also cousin drugs but one may work while the others doesnot. I was also diagnosed 2 years with mets to the brain, lung and a small tumor on my back. I hope that the Affinator will work for you.

Hello:

I can sympathize with your husband. Sounds like a tough one. Did they tell you what type of renal cell cancer your husband has? There are different types that respond to different treatments. I am curious to what type it is to see if it is similar to mine.

The previous post is correct. Afinator works on a similar pathway as Torisel (m-TOR). My advise is always be one step ahead and have a plan B. I am not a physician and this is not medical advise, but if Afinator doesn't work, ask your Oncologist about Avastin. This is a monoclonal antibody that may give him some time. I believe it can also be used in combination with other drugs to get get a good response.

There is also something called IL-2 which is immunotherapy. Its success rate is low but can produce a durable reponse. I don't know what your husband's age or health is, but this treatment is very strenuous.

Many of us are in a similar boat as your husband. The key is to be your own advocate, or in this case, he is lucky to have you. Ask questions, please post how he is coming along, the successes and the failures because it may help others gain information in their fight.

Good luck and God bless

Krys

 

Thank you Krys and Geri for replying to my message.  It is nice to have support. 

 The Oncologist mentioned trying Avastin, but the insurance company will not pay for it.  I've never heard anything about Gemzar or Taxotere.  Are they used to treat renal cancer?   We also discussed IL-2, but the Oncologist did not feel that my huband would be a good candidate for it.  

 Thanks again for your support-

~Robin

 

On 6/29/2009 rkb155 wrote:

I don't know where else to turn for advice, so I am hoping someone here can help me.   My husband was diagnosed with renal cancer two years ago.  We were told it was confined to a cyst in the kidney and a partial nephrectomy was done.  When they biopsed the surrounding tissue, cancer cells were found.  There was a chance that they got it all, so they were going to monitor my husband with quarterly PET scans.  The first was clean.  The second (6 months after the surgery) lit up spots in the lymph nodes near the kidney, the hip and throat.

He was treated with Torisel, which didn't work.  He lost his voice.  The tumor in the throat was removed.  His voice came back.  He started walking with a limp, and was put on Nexavar.  A bunch of bad side effects, and the Nexavar didn't work.  Tumor in the throat grew back and the limp got worse, not to mention the pain.

 Next treatment, radiation on the throat and hip.  The voice came back but the limp got worse.  Then he needed either a cane or walker depending on whether he was having a good day or a bad one. 

After the radiation, he was started on Sutent.  The Sutent didn't work.  The tumor in the throat is back.  The hip pain has gotten worse and now he has a tumor in his elbow. As well as some spots in his lungs.

He is on a pain patch as well as dilaudid for the pain.  He is going to start Afinitor this week (as soon as the drug comes in).

 My questions:  What can we expect in the future?  Life expectancy?  Pain?  Anything you can tell me?

Thanks for listening...

My husband was diagnosed with stage 4 renal cell in may of 2008. I too had the same questions you are asking.  I have found that renal cell is a very unpredictable and sometimes aggressive cancer.  The doctors tell me there is no way to predict how much time my husband has at this time.   So far the cancer has metasisized(sp?) to his bones.  In the past year they have found 5 tumors.  Two of them have been in his left arm.  It has been very painful for him.  The tumors have eaten away at his bone resulting in being broken twice now, along with three surgeries.  The doctor started my husband on Sutent 8 weeks ago.  He also has an infusion of Zometa once every 4 weeks.  The Zometa is supposed to help make his bones stronger so he won't be in so much pain.  They tell us the Sutent is not a cure, but will help give him a better quality life for however much time he has left.  I have spent hours and hours searching the internet for answers.  I've come to realize there are not many answers to my many questions.  I hope and pray that the medicine he is taking helps to ease his pain.  My heart goes out to you.  I know what you are going through.  Remember to take care of yourself and know I am here if you need to talk.