Seeking any information on RCC

ga_dawg
ga_dawg Member Posts: 11
in Kidney Cancer #1

First a little background on myself. I am a 48 year old male and was diagnosed with stage IV RCC September 2012. I went to the orthopedist in August 2012 because I thought I had injured my shoulder while working on my sons car. The orthopedist said it wasn't an injury and sent me for further test. Dozens of xrays, scans and MRIs later it was decided I had RCC. I had a large mass (10 x 9 cm) in my right kidney and it had grown into the vena cava. I also had a tumor on the left scapula, multiple (too many to count) nodules in both lungs and a met to the T9 vertebrea. I began radiation on my shoulder and spine and was then suppose to begin Sutent. During our first meeting with our local oncologist, when asked what my prognosis was, my local oncologist said "we aren't to that point yet" and gave none. In October I obtained the notes from the initial visit and they stated he had told me I had 6-10 months left. The doctor had not told us this and my wife hit the roof and demanded I go somewhere else. By the end of October I was at M.D. Anderson in Houston for treatment. My oncologist in Houston, Dr. Corn, said I was young and healthy and he could do something for me. On November 5, 2012 I began taking 400 mg of Votrient and by 12/1/12 I had worked up to 800 mg. The side effects were not unbearable and I continued to work. In addition to Votrient I was also given Zometa every 30-60 days. The Zometa side effects were worse than the Votrient side effects. I have continued to work every day since finding out about the cancer and I am determined to remain positive.

At a follow-up appointment on 1/3/13 the scans noted the kidney and scapula masses had decreased and were showing signs of "rotting" and the lung nodules were decreasing in size with some actually disappearing. Dr. Corn was very happy. At another follow-up on 3/4/13 scans continued to show signs the Votrient was working and the decision was made to remove my right kidney. On 3/7/13 I had a radical nephrectomy. The kidney, lymph nodes and part of the vena cava was removed. Pathology on the kidney indicated the tumor had shrunk to 7.4 x 7 cm and noted "extensive therapy effects". Dr. Corn was super excited. I spent 4 weeks in Houston recovering and then returned home. I am now back on the Votrient and it seems to be working again, at least my body feels as though it is working.

I would like to hear from others who have been diagnosed with stage IV RCC. How are you dealing with it, what treatment are you receiving and what have you found that works the best. I would also like to hear from those on Votrient and Zometa. What side effects have you experienced? How is it working for you? For those who have had a nephrectomy I would like to hear how your recovery went. Any information anyone can provide on fighting and surviving this dreaded monster will be really appreciated. My wife and I are in this fight to win and we want to hear from others, especially those who are fighting and winning.

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    #2
    Hello

    Hi. Welcome and glad to hear about your progress.

    Can well understand your wife hitting the roof. There's no room for dishonesty like that in a patient-doctor relationship. What your doctor did is unforgiveable. In fact, it might be professionally unethical to the point of requiring a formal complaint to the medical board. But, your concentration is where it ought to be: finding doctors and treatments that will help. Perhaps he did you a favor, since it seemed you moved your butt to someone that has really helped you out. I'm sure you're getting better care than you would have gotten had you stayed with him.

    I had Stage 3 Grade 3 and had a radical nephrectomy December 10th, 2012. My tumor was just under 7cm and had invaded the minor veins. There was no other treatment recommended other than follow-up scans and my only other option was to think about doing a drug trial. I had to choose between a votrient trial or an everolimus trial. I'm currently on an everolimus trial. I take 10mg a day (or there's a 50/50 chance I'm on placebo, but I don't think I am).

    My recovery went pretty well. I took 6 weeks off work and was glad I did. I had thought at first to take 3 weeks off, but the doctor approved 6 and for me it turned out to be the perfect amount of time off. I ate really healthy, drank lots of water, and did lots and lots of walking and I think all that paid off.

    I had to start the drug trial within 12 weeks of my surgery, so I went on it at about 10 weeks. I'm having some serious fatigue and low-level naseau that comes and goes, but I attribute that to the everolimus and not the surgery.

    Wishing you the best.

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    Information

    Welcome here to a very effective support network.  You've made some smart moves and you're reaping the benefits of being proactive in your own care.

    By all means keep asking questions here but you can get a fast start by going to our two biggest threads here - just the ticket for you!! One is  entitled Votrient side-effects and, for speed, can be found here

    "http://csn.cancer.org/node/239956"

    and the other is "Recovering from radical nephrectomy"  at

    http://csn.cancer.org/node/170619

    There's quite a bunch of us here who're stage 4 - read the posts by foxhd for real inspiration - threads entitled MDX-1106 , latest in the series being "Nivolumab (new official generic name for BMS936558 - MDX-1106" but the earlier ones contain more of The Man.
    There are a few of us who are stage 4 and on Votrient and doing well -  John ("one putt") is one - he's on a trial with nivolumab and Votrient and I'm another (just on Votrient.

  • one putt
    one putt Member Posts: 72
    #4
    RCC STAGE IV

    Your diagnosis sounds eerily familiar to me. Like you,I had a tumor on my kidney,numerous lung mets, a tumor on my left hip,and one on my right scapula. had a radical nephrectomy 11-1-11. I tried HDIL-2 treatment inJan. and Feb. 2012. I'm currently in a clinical trial for nivolumab/votrient since 5-12-12. My wife recntly posted an update of my success in this trialwhich can be found under her thread titled nivolumab/votrient clinical trial for one putt. My tumor burden has decreased by 57% since I began the trial. I have been on 800mg of votrient since 5-12-12 with only one 7 day break due to mouth sores and gum bleeding. I get an injection of Xgeva for bone mets every 4 weeks. Xgeva costs about twice as much as Zometa but I have had no discernable side effects from these injections. I have gained 35 pounds since beginning my trial and have a very good quality of life. I also work but still can't play golf due to microfractures in my scapula caused by the tumor when it was increasing in size. I have had some diarrhea and nausea from the votrient but for the most part my diarrhea is balanced out by the constipating effects of my pain meds(20mg oxycontin slow release 2xday).I'm 64 and doing well. you have the added advantage of youth on your side. I would be happy to answer any questions you may have and there are many others on this site much more knowledgeable who you will find very helpful. Sorry you had to join this club but good luck and keep on fighting.              

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
    prognosis and zometa

     Hello ga-dog. I've been thru something similar. From my initial symptoms to nephrectomy which was almost immediate, I had no time to prepare and learn about this. 6 months after surgery I had enough mets to have shared with everyone on a football field. Yet I was told that they "got it all." A couple cats and a pet scan result were reported to me as clear. Looking back, this had to be impossible. I did not know enough at the time to have recieved copies of my tests and reports. Maybe I was in some denial. The facility and oncologist I was seeing did not have the ability to provide further treatment. (actually my oncologist never provided any treatment. But she did have me come in for blood work and talk. Easy gig for her to make money for nothing.) Prognosis was only several months to live. Then the reality and panic set in. Long story short, I qualified for a spot in the MDX-1106 clinical trial at Yale New Haven/Smilow cancer hospital. Nearly ALL tumors are GONE! I do have a few resistant bone mets in my spine and ribs. Radiation was questionably effective. I've been recieving zometa now for a few months. I am not sure about side effects. I do have periods of muscle and bone pain. Some days of exhaustion. I am not able to say the MDX or zometa are the problem. In any event, I am an active guy. Weight train, run, golf, ride motorcycles, and eat pizza and drink beer. What else in life is there? What is important here is that these are "normal" activities for me. I am living well.

    Cancer never leaves my thoughts. But it also does not depress me. It does not let very much air out of my balloon. I am fit and strong. I initially began posting here, like you, with concerns and questions. Now,I post here daily to provide some inspiration to others who feel helpless and hopeless. We are living with cancer. So what? We don't waste energy on negative thoughts. Winning is the goal but a draw is achievable and more than acceptable. Don't believe in studies more than a year old. We are writing a new book.

  • ga_dawg
    ga_dawg Member Posts: 11
    #6
    todd121 said:

    Hello

    Hi. Welcome and glad to hear about your progress.

    Can well understand your wife hitting the roof. There's no room for dishonesty like that in a patient-doctor relationship. What your doctor did is unforgiveable. In fact, it might be professionally unethical to the point of requiring a formal complaint to the medical board. But, your concentration is where it ought to be: finding doctors and treatments that will help. Perhaps he did you a favor, since it seemed you moved your butt to someone that has really helped you out. I'm sure you're getting better care than you would have gotten had you stayed with him.

    I had Stage 3 Grade 3 and had a radical nephrectomy December 10th, 2012. My tumor was just under 7cm and had invaded the minor veins. There was no other treatment recommended other than follow-up scans and my only other option was to think about doing a drug trial. I had to choose between a votrient trial or an everolimus trial. I'm currently on an everolimus trial. I take 10mg a day (or there's a 50/50 chance I'm on placebo, but I don't think I am).

    My recovery went pretty well. I took 6 weeks off work and was glad I did. I had thought at first to take 3 weeks off, but the doctor approved 6 and for me it turned out to be the perfect amount of time off. I ate really healthy, drank lots of water, and did lots and lots of walking and I think all that paid off.

    I had to start the drug trial within 12 weeks of my surgery, so I went on it at about 10 weeks. I'm having some serious fatigue and low-level naseau that comes and goes, but I attribute that to the everolimus and not the surgery.

    Wishing you the best.

    Todd

    Best Wishes

    Thank you so much for sharing your story. Best of luck with the everolimus trial.

     

    Scott

  • ga_dawg
    ga_dawg Member Posts: 11
    #7
    Texas_wedge said:

    Information

    Welcome here to a very effective support network.  You've made some smart moves and you're reaping the benefits of being proactive in your own care.

    By all means keep asking questions here but you can get a fast start by going to our two biggest threads here - just the ticket for you!! One is  entitled Votrient side-effects and, for speed, can be found here

    "http://csn.cancer.org/node/239956"

    and the other is "Recovering from radical nephrectomy"  at

    http://csn.cancer.org/node/170619

    There's quite a bunch of us here who're stage 4 - read the posts by foxhd for real inspiration - threads entitled MDX-1106 , latest in the series being "Nivolumab (new official generic name for BMS936558 - MDX-1106" but the earlier ones contain more of The Man.
    There are a few of us who are stage 4 and on Votrient and doing well -  John ("one putt") is one - he's on a trial with nivolumab and Votrient and I'm another (just on Votrient.

    Much Thanks!

    Thank you so much for the information. I am reading up on them right now. It's nice to be able to get information from others in the same situation as my self.

     

    Best Wishes,

    Scott

  • ga_dawg
    ga_dawg Member Posts: 11
    #8
    one putt said:

    RCC STAGE IV

    Your diagnosis sounds eerily familiar to me. Like you,I had a tumor on my kidney,numerous lung mets, a tumor on my left hip,and one on my right scapula. had a radical nephrectomy 11-1-11. I tried HDIL-2 treatment inJan. and Feb. 2012. I'm currently in a clinical trial for nivolumab/votrient since 5-12-12. My wife recntly posted an update of my success in this trialwhich can be found under her thread titled nivolumab/votrient clinical trial for one putt. My tumor burden has decreased by 57% since I began the trial. I have been on 800mg of votrient since 5-12-12 with only one 7 day break due to mouth sores and gum bleeding. I get an injection of Xgeva for bone mets every 4 weeks. Xgeva costs about twice as much as Zometa but I have had no discernable side effects from these injections. I have gained 35 pounds since beginning my trial and have a very good quality of life. I also work but still can't play golf due to microfractures in my scapula caused by the tumor when it was increasing in size. I have had some diarrhea and nausea from the votrient but for the most part my diarrhea is balanced out by the constipating effects of my pain meds(20mg oxycontin slow release 2xday).I'm 64 and doing well. you have the added advantage of youth on your side. I would be happy to answer any questions you may have and there are many others on this site much more knowledgeable who you will find very helpful. Sorry you had to join this club but good luck and keep on fighting.              

    Thanks

    Thank you for sharing your story with me. I will make sure I read your wife's thread. I'm so glad the treatment is going well for you. Sounds as though votrient is working for you. I'm hoping it continues working for me after my surgery. I haven't had any of the mouth sores, thank goodness! I'm going to check into the Xgeva. The Zometa side effects weren't as bad this last time, but I tend to believe that is because I didn't have as much votrient in my system.

    Again, thanks for sharing this information with me. I hate being in this club, but I'm glad I found somewhere I can go to get questions answered by people who are experiencing the same thing I am.

    Best of Luck with your treatment,

    Scott

  • ga_dawg
    ga_dawg Member Posts: 11
    #9
    foxhd said:

    prognosis and zometa

     Hello ga-dog. I've been thru something similar. From my initial symptoms to nephrectomy which was almost immediate, I had no time to prepare and learn about this. 6 months after surgery I had enough mets to have shared with everyone on a football field. Yet I was told that they "got it all." A couple cats and a pet scan result were reported to me as clear. Looking back, this had to be impossible. I did not know enough at the time to have recieved copies of my tests and reports. Maybe I was in some denial. The facility and oncologist I was seeing did not have the ability to provide further treatment. (actually my oncologist never provided any treatment. But she did have me come in for blood work and talk. Easy gig for her to make money for nothing.) Prognosis was only several months to live. Then the reality and panic set in. Long story short, I qualified for a spot in the MDX-1106 clinical trial at Yale New Haven/Smilow cancer hospital. Nearly ALL tumors are GONE! I do have a few resistant bone mets in my spine and ribs. Radiation was questionably effective. I've been recieving zometa now for a few months. I am not sure about side effects. I do have periods of muscle and bone pain. Some days of exhaustion. I am not able to say the MDX or zometa are the problem. In any event, I am an active guy. Weight train, run, golf, ride motorcycles, and eat pizza and drink beer. What else in life is there? What is important here is that these are "normal" activities for me. I am living well.

    Cancer never leaves my thoughts. But it also does not depress me. It does not let very much air out of my balloon. I am fit and strong. I initially began posting here, like you, with concerns and questions. Now,I post here daily to provide some inspiration to others who feel helpless and hopeless. We are living with cancer. So what? We don't waste energy on negative thoughts. Winning is the goal but a draw is achievable and more than acceptable. Don't believe in studies more than a year old. We are writing a new book.

    Helpful info

    Thank you for sharing your story.  I'm so glad your treatment is working well. My bone mets seem to be pretty resistant also. My initial oncologist assured me radiation would help with the pain and it did absolutely nothing. He was amazed. This is also the one who lied about discussing my prognosis with me. All radiation did was make me lose weight and feel horrible.

    Like you I don't let the cancer depress me. I still live my life and follow the directions of my doctor at MD Anderson. He told me "don't go home and curl up and die, live your life" and that is what I'm doing. Some days are harder than other's but my wife and I take them in stride. We know our limits and work within them. My wife compares this cancer fight to any sport, she tells everyone we are in this to win and just like with sports, if you quit, you lose.

    Best wishes with your treatment. I look forward to staying in touch with all of you guys!

     

    Scott

     

     

  • fleurdelis
    fleurdelis Member Posts: 3
    #10
    RCC Stage 4 spot on skull and multiple lung nodules

    As I read everyone's posts they all seem so similar.  I had a right nephrectomy and then 18 months later, a mass was removed from my lumbar.  It was identified as clear cell renal carcinoma.  I, too, recently made a trip to MD Anderson.  I began Votrient on 03/15/2013 800 mg for three weeks, stopped for a week and then 600 for one week.  I continue at 600 mg per day.  The tests the end of April 2013 showed shrinkage on the spot on the skull and the lung nodules. No new areas were noted.

    i was instructed to take my Votrient in the morning one hour before eating.  I read so many posts where it is being taken at night.  Why the different dosage times?

    Knowledge is power.  

     

    Keep on keeping on. 

       

  • GSRon
    GSRon Member Posts: 1,303 Member
    #11
    fleurdelis said:

    RCC Stage 4 spot on skull and multiple lung nodules

    As I read everyone's posts they all seem so similar.  I had a right nephrectomy and then 18 months later, a mass was removed from my lumbar.  It was identified as clear cell renal carcinoma.  I, too, recently made a trip to MD Anderson.  I began Votrient on 03/15/2013 800 mg for three weeks, stopped for a week and then 600 for one week.  I continue at 600 mg per day.  The tests the end of April 2013 showed shrinkage on the spot on the skull and the lung nodules. No new areas were noted.

    i was instructed to take my Votrient in the morning one hour before eating.  I read so many posts where it is being taken at night.  Why the different dosage times?

    Knowledge is power.  

     

    Keep on keeping on. 

       

    ideas

    One thing I have learned is here you will get lots of good info and some ideas and some good experience - life lessons...

    First I will give my 2 cents worth.. when you / us ask that one question...  "How Long do I (we) have..?"  and doctors give an answer.. well,  I think (do not know for sure) that those answers are for those that have no treatments for the Mets.   I have first hand info from when my Mom was finally dx'd with Cancer, they said about 2 to 6 months, and my Mom 9at first) refused treatment.   The Chemo drugs got her over 2 years..  However I suspect that she would have fit that 2 to 6 month's without treatment.  That said there are people here that are 20 plus years after surgery..!

     

    Next when to take the Votrient.. guess the answer is whenever you want to take it..!   Some of us take it just before bedtime thinking it does two things, one it reduced the nausea and other side effects and two that the drug will hopefully work better as our bodies are not expending the energy it would if we took it in the morning...  Just a guess, maybe hopeful thinking.. but I suspect the time is not as important as how you feel.  For me, I had only minor nausea about an hour after taking the drugs, but that has gone away.  Also we are all different and the side effects affect us differently as well.  For me the diarrhea and the fatigue are the worst side effects.  My blood pressure is  being dealt with by taking BP meds.

    Ron 

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