Renal Cell Carcinoma (Kidney Cancer) Support Group
Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.
My husband has been weighing the risks and benefits of Sutent and Avastin, and we've both seen statistics that the increase in life span with this treatment for metastatic renal cell cancer is not that great, ~ 5 months on average. Don't know if it's worth it, the cost, the side effects, the prolonging of death. Any comments?
I am sorry to hear about your husband. I also have RCCC that metastasized in my lungs, so I can relate to your situation. It has been 1.75 years since my growth on my kidney was discovered and 1.25 year since the nodes in the lungs were first identified.
The treatment for RCCC is very personal and I also considered not taking treatment. After some consideration and discussion with family and doctor, I decided to start treatment. I am on Sutent 50 mg on a 28 day cycle on the drug and a 14 day cycle off. I have been on the Sutent for 9 months just starting my 6th cycle. My nodes in my lungs have reduced by 80%+ and stable, bones show no growth, and other organs are cancer free at this time.
My reasoning to start the treatment was simple in the end. I wanted some more time with my family including wife, children, and grandkids. Not starting treatment was the easy way out while taking the Sutent is harder in my opinion. I am still working and doing most of the things I did in the past. There are some points in the treatment when it is overwhelming and I do nothing except go to work. I am trying to not let the treatments control my life, but it does at times.
If you look at the time from discovery to treatment, you will notice it took me 6 months to seek additional medical help. Also, it took me 6 weeks to decide if I would take treatment. In the end, I decided to try it and see. It is working for me and I am pleased so far.
I have adjusted my attitude through this process. I PLAN TO BEAT THIS. The longer I stay alive the better chance there is that new drugs will come along to help. We are seeing advancement every day.
In closing, your husband has to make his own decisions and no one can make them for him. The decisions are not easyI know.
I wish you and your husband the best and wisdom in this decision process. I know you will make the decision that is best for you.
Cheers,
Gary
My husband lost his kidney to cancer in 2002. Back then, there weren't many treatment options so we really thought his days were numbered. The side effects of the first treatment he received (Interleukin 2) were horrific and the treatments didn't help. However, we tried things that were just clinical trials back then and some medications, Nexavar and Sutent to name a couple, gave him positive results including shrinkage of his tumors. We are going on 8 years of survival of a disease that should have taken my dear husband long ago. For him and for me, we're determined to fight until that cure is found. We've learned that a person CAN live with cancer!
The best to you and your husband
LSMS
These two posts are very very positive and worthwhile. One is from a patient, Gary, who tells it like it is with style and intelligence. LSMS is, like me, a spouse who is supportive and hopeful.
Take the advice of the doctors in whom you have placed your trust and of course, the decision is yours. Please know that internet web sites that you may reference are not always up to date and rarely present the human element either.
For us, choosing to participate in a clinical trial at a major cancer center was a wise one. Although not without side effects, my husband is doing very well on the oral chemotherapy he was given. He has experienced 68% shrinkage so far and is stable at this point in time. He had a nephrectomy almost one year ago and was thought to be cancer free, but it metastasized to his lungs. We started with oncologist in January and opted to try the newer drugs. The idea is to stay alive with a decent quality of life while research into more choices and more effective drugs with fewer side effects are developed. Our lives are a little different now, but truthfully not all that much. He goes to work every day and other than a head of white hair, intermittent gastric distress and some fatigue - he is doing just fine! We are very hopeful that he can beat back the monster cancer and with the support of the doctors, pharmaceuticals, family, friends, etc. we intend to do just that.
We are a team and we want to stay that way for as long as we can!
Good luck to you both....
glors
My father was diagnosed in stage 4 RCC in 2007. He went on 6 months of chemo (Torisel) and 24 infusions. His recent PET scan was good. The "spots" were concluded as surigical sutures and inflammation. HOWEVER, he needs to be monitored every 3-6 months. Trust your doctors, your family and believe in yourself.
Faith and positivity as well as a "balanced" diet (try to omit from beef or red meat) is key.
Best wishes to everyone out there and thank you for the prayers
I was diagnosed with rcc in both kidneys in Sept 04. I had a partial on my rt kidney in Nov04 and an autotransplant on my lft kidney ib Jan05. Appro. 1 year later the rcc became mrcc(metastisis) in my lymph nodes in my chest. I decided to try IL-2 and it WAS horrible and did not work. I tried sutent for 4 months and it put me in the hospital. I then tried a clinical trial and that put me in the hospital. My family got together and informed me that my quality of life was more important than having me around for a few months more. I agreed with them and this is what I told my oncologist. We decided to give Torisel a try and 16 months later I am still around. My quality of life is not perfect but neither is plain old old age. A few weeks ago I was diagnosed with bone metastasis in my sacrum. Because the Torisel has kept my tumors at bay I decided to go ahead with 8 doses of radiation. My last dose was today and the pain from the metastisis has all but gone away. The Torisel has very few side effects that are very tolerable. Until I decide my quality of life is no longer tolerable I will forge on. I know that your husband needs to make this decision and I am sure you both have talked to your oncologist and your family. Explore all options. I almost gave up 16 months ago and decided to give the Torisel a try. I'm glad I did. Good Luck to you both.
Ronnie1
There is SO much research going on now for new drugs that we feel it is worth the chance to stay around as long as possible for that one new one that will be his cure! If there comes a time when it sounds like he would be giving up quality of life to try something, then we'll re-evalutate. Don't think sutent did that.