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JohnD9913
JohnD9913 Member Posts: 5
edited March 2014 in Kidney Cancer #1
Hello, I'm new here and I have been "lurking" as it were, over many cancer related sites, and decided to join this one.... A year ago today, I fell and broke my upper arm (Right Humorus) and I went to the ER..They took xrays and told me that I should contact an Orthopedic Surgeon ASAP because the xray showed a "pathologic fracture" at the fracture site. I went the next day and that it was caused by a clear cell cancer growth. They referred me to an Oncologist, who, after many tests and other procedures confirmed that I had renal cell cancer. The kidney cancer was found on top of my left kidney about 2.5 cms. They also found 2 more spots on my bones (iliad and left femur). We started treatment with Sutent 24mg for 4 weeks, the reaction was awful and debilitating. We further tried a reduced dosage of 13.5mg with no relief and after scans, showed no improvment. I am currently being treated with Torisel weekly and I have tolerated it very well, only side effects have been loss of taste, mouth sores, and occasional dyheria (sp). I am in my 26th week of this treatment and my doctor says that we are holding our own, no growth, no new sites. I'm just curious if this will ever subside or is this like diabetes, you're stuck with it.... I feel fortunate that we are keeping this at bay, but was wondering if anyone had it cleared up? Thanks for listening (reading)

John

Comments

  • Time2luv
    Time2luv Member Posts: 49
    #2
    Stuck with it?
    As a cancer patient, yes we are always stuck with it. We may be in remission for awhile or a long time but it will always be with us. I had my right kidney removed January 2006 after learning about my clear cell renal carcinoma due to a bicycling accident. Almost four years to the day that I was told I had cancer I was told I now have cancer in my left kidney. The spot is still small (1 cm in September 2009) but it was growing. They wanted to WATCH it for 6 months (easy for them to say, let's just watch it, it isn't growing in them!). I have MRI coming up on March 15th. I've been very lucky so far not to have any treatments but I feel the pain of all the people on this site that has endured the side effects of treatments. I'm thinking I may join your club soon. I discovered a lump on my upper chest this past week and very concerned that it may be cancer also...will just have to see what the test say. But to answer your question ~ with every test, you will be nervous and worried, it will always be with you, but have Faith in God and NEVER, NEVER, NEVER give up! There are a lot of good people on this site that have gone through so much and are so willing to share their experiences with all of us.
  • JohnD9913
    JohnD9913 Member Posts: 5
    #3
    Time2luv said:

    Stuck with it?
    As a cancer patient, yes we are always stuck with it. We may be in remission for awhile or a long time but it will always be with us. I had my right kidney removed January 2006 after learning about my clear cell renal carcinoma due to a bicycling accident. Almost four years to the day that I was told I had cancer I was told I now have cancer in my left kidney. The spot is still small (1 cm in September 2009) but it was growing. They wanted to WATCH it for 6 months (easy for them to say, let's just watch it, it isn't growing in them!). I have MRI coming up on March 15th. I've been very lucky so far not to have any treatments but I feel the pain of all the people on this site that has endured the side effects of treatments. I'm thinking I may join your club soon. I discovered a lump on my upper chest this past week and very concerned that it may be cancer also...will just have to see what the test say. But to answer your question ~ with every test, you will be nervous and worried, it will always be with you, but have Faith in God and NEVER, NEVER, NEVER give up! There are a lot of good people on this site that have gone through so much and are so willing to share their experiences with all of us.

    Thank You
    TY for your kind words.... I will be completing my 24 treatment next week and than we'll get another series of scans to see how we are doing...last scans in January showed no continued growth or new sites, so I'm thankful for that.... I'm looking forward to some progress on this new set of scans.... My best wishes for your upcoming tests and for your continued recovery.......John
  • lbinmsp
    lbinmsp Member Posts: 266
    #4
    Seems like forever
    Hello - and am so glad they found your cancer fairly early on. As you've probably been told, RCC is one sneaky disease and almost always is found when looking for something else. Unfortunately it is one of those cancers that doesn't just go away. There are some who have been tumor free for years and years - and then it pops up somewhere else. We can only be happy to have those 'years' in between. I was one of those - made it nearly 5 years before it popped up again in my lung. The thing to focus on is this - as little as 10 years ago there were few (if any) treatments that worked on kidney cancer. As each year passes, more treatment options become available and we can maintain some optimism that these treatments will keep us going. Followups are critical with RCC. My doctors have all said that and as much as I hate going (you always get spooked again when the tests are due), I want to know we'll find any recurrence very early.
  • JohnD9913
    JohnD9913 Member Posts: 5
    #5
    lbinmsp said:

    Seems like forever
    Hello - and am so glad they found your cancer fairly early on. As you've probably been told, RCC is one sneaky disease and almost always is found when looking for something else. Unfortunately it is one of those cancers that doesn't just go away. There are some who have been tumor free for years and years - and then it pops up somewhere else. We can only be happy to have those 'years' in between. I was one of those - made it nearly 5 years before it popped up again in my lung. The thing to focus on is this - as little as 10 years ago there were few (if any) treatments that worked on kidney cancer. As each year passes, more treatment options become available and we can maintain some optimism that these treatments will keep us going. Followups are critical with RCC. My doctors have all said that and as much as I hate going (you always get spooked again when the tests are due), I want to know we'll find any recurrence very early.

    Comment
    You know, I had the same sort of reaction when I was diagnosed with Type 2 Diabetes. It took me a long while to get comfortable with that disease. (Comfortable may not be the right word, but for me, it fits) After I got used to, and accepted, diabetes as a chronic and long lasting disease, I was able to set to the tasks of working with diabetes treatment instead of fighting it. I grow up in a generation that when the big "C" was mentioned, Doomsday loomed in the near future... Since my diagnosis, though, I found out that there are so many possible treament actions, and like diabetes, I have been learning to work with the treatments and at best keep this disease from going any further. I do get spooked when the tests come up. I will be going through some more scans in 2 weeks, so I am hopeful to a good turnout...Thanks for you support, and I appreciate your comments....John
  • KCFighter
    KCFighter Member Posts: 50
    #6
    lbinmsp said:

    Seems like forever
    Hello - and am so glad they found your cancer fairly early on. As you've probably been told, RCC is one sneaky disease and almost always is found when looking for something else. Unfortunately it is one of those cancers that doesn't just go away. There are some who have been tumor free for years and years - and then it pops up somewhere else. We can only be happy to have those 'years' in between. I was one of those - made it nearly 5 years before it popped up again in my lung. The thing to focus on is this - as little as 10 years ago there were few (if any) treatments that worked on kidney cancer. As each year passes, more treatment options become available and we can maintain some optimism that these treatments will keep us going. Followups are critical with RCC. My doctors have all said that and as much as I hate going (you always get spooked again when the tests are due), I want to know we'll find any recurrence very early.

    Worrisome
    Ibinmsp - I'm going in for my 4 year check up next week and the doctor has suggested my follow up may "change" or discontinue if nothing is found by year 5. That makes me nervous! Sorry to hear of your recurrence. what type of RCC and stage was your original diagnosis?

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