Renal Cell Carcinoma (Kidney Cancer) Support Group

kkzimm,

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 easy…I 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

Dear kkzimm,

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

Hello there
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

Thanks for your responses, they are much appreciated. I will support my husband in whatever decision he makes, as I know he is making an informed and rational decision. I know that God is in control, and if my husband's time on earth is coming to an end, I will lean on God and do my best to accept that.

My husband was diagnoised in 2005, after surgery he had radiation (25 treatments), was cancer free for 18 mos.It spread to his liver, he had surgery and then began the chemo. He went on Nexavar (6 mo.), then sutent (6 mo.), then torisil for for almost 6 mo. the Dr. said he "needed a break" so he took him off of it. He was doing great on it no problems at all. He wanted him to do a trial. The trial we found out was one for ovarian cancer. We had already become dissatisfied with this Dr. The one we started with left. We decided to change and it was the best move we made. He was put on interferon and did well for a while then it began to take its toll. In March of this year Afinitior was approved. As soon as I saw it on the internet, I mentioned it to the Dr. and he had not gotten any info on it. He went to work on it and 2 wks later he started on it. Our last scan was very good. Weigh all your options, get 2nd opinions on drugs if necessary and most of all, PRAY for the right decision to be made. No one can make it but you husband. Whether you agree or not you have to support him and be there for him. I pray God will be with you.

I agree with most of the responses. the decision is ultimately yours. with the recent medical advances, why not take a leap of faith and undergo the treatment?

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

Hi kkzimm,
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

God bless you and your husband today. All I know is that they told my dad to get his affairs in order 8 years ago, at age 67. We have had lots of good time due to treatment and prayer. Not all the treatments have been easy, but much of the time he was able to manage the side effects and enjoy his life. We have hit a hurdle right now and I pray he will continue to fight as long as his quality of life is good. I was worried my dad would reject treatment. I am so grateful that he went ahead. It is a very personal decision and I pray for grace and wisdom for you both.

hello kk i too have rcc and it's been a long bumpy road i have a wonderful wife and great daughter i started chemo this week with sorafeib and temsirolimus hoping to get a few more months with them. i was a marine and i remember they always told us never to retreat just fall back and regroup i hope you and your husband all the best and a few painful months is better than no months

My husband was on sutent until 4 weeks ago. We had researched this pretty deeply before trying it and also got 2 other opinions. Many doctors feel sutent is the drug of choice right now and shows results in 75% of patients. Also side effects are not as bad as many other drugs. He did get thrush (yeast infection in the mouth), but once he got medication, that cleared up in 24 to 48 hours. Unfortunately, he was not one of the patients that showed shrinkage and he's no longer on it. We also heard that all hospitalizations don't cover sutent so that's also a huge consideration . Our drug provider told us that the cost is around $10,000 a month, so we would not have been able to take this treatment without it. Remember, that this is a newer drug...has only been on the market a few years, so that 5 to 6 month prolonging of life is not the most recent research. Our oncologist has several patients who have been on this drug for about the entire time the drug has been available.

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.