Metastatic Stage 4 Renal Cell

steveshea
steveshea Member Posts: 1
edited March 2014 in Kidney Cancer #1
I was diagnosed with renal cell in July 2002 with a 13cm tumor on right kidney, and two nodes in each lung - I had a radical laparoscopic nephrectomy of right kidney on August 28th, with follow-up blood work, chest xrays and CT scans in September and November - pathologist determined the RCC to be sarcomotoid type - oncologist found the largest lung tumor had increased in size from 1.5cm in July to 2.0cm in September and 2.5cm in November - he is at MD Anderson and does not recommend any treatment at this time since he would only recommend interferon and it would simply slow the growth, which is happening now - any feedback would be greatly appreciated. I have been feeling great since surgery and gained back my 30 pounds previously lost. KeyJudge@aol.com.

Comments

  • jsell
    jsell Member Posts: 1
    #2
    My Mother was diagnosed with stage 4 renal cell carcinoma. After they removed her kidney, She was treated at UIC in Chicago. PEG-Interferon and Interleukin-2. Two years ago she had 15 areas in the lungs where the cancer had spread, after the treatment the cancer reduced 90%. We are so happy, and grateful. I will say a prayer for you and wish you the best
  • treeman13
    treeman13 Member Posts: 2
    #3
    jsell said:

    My Mother was diagnosed with stage 4 renal cell carcinoma. After they removed her kidney, She was treated at UIC in Chicago. PEG-Interferon and Interleukin-2. Two years ago she had 15 areas in the lungs where the cancer had spread, after the treatment the cancer reduced 90%. We are so happy, and grateful. I will say a prayer for you and wish you the best

    Glad to hear of your success. How was the IL-2 / Interferon treatments administered? Injections? How often? Thanks.
  • judia
    judia Member Posts: 3
    #4
    Hello! I am a 10cm. Stage IV RCC survivor. Am wondering why your oncologist didn't recommend Interluken 1 (IL-2)which is an FDA approved treatment for kidney cancer. I took this, along with the Interferon, and three lung mets are now gone. Response percentages are somewhat low, but it does happen. RCC can be beaten. Demand whatever treatments are out there. That, with aggressive surgery, is the only way. Hope you are doing well. You can reach me at: stellackcc@aol.com
  • kristine4444
    kristine4444 Member Posts: 1
    #5
    judia said:

    Hello! I am a 10cm. Stage IV RCC survivor. Am wondering why your oncologist didn't recommend Interluken 1 (IL-2)which is an FDA approved treatment for kidney cancer. I took this, along with the Interferon, and three lung mets are now gone. Response percentages are somewhat low, but it does happen. RCC can be beaten. Demand whatever treatments are out there. That, with aggressive surgery, is the only way. Hope you are doing well. You can reach me at: stellackcc@aol.com

    You are just the person i needed to find after searching and searching! i need help for my 35 year old cousin, Laura. She is newly diagnosed with RCC and has been told she will probably receive Interleukin treatments. She has heard terrible things about this treatment and about her cancer. I promised to find her someone to help. Maybe it's you? Please write to me at Kristinebland@aol.com. I will write to you at your email now. Hope you can help us! ~Kristine~
  • lanissa
    lanissa Member Posts: 1
    #6
    your situation sounds similar to my mothers...she was recently diagnosed with renal cell in left kidney with 10cm mass...also 8 lesions on lungs and now they have told us it has spread to her lymph nodes, pancreas, and spleen....we are looking into transfering from norman to md ander.....any thoughts or encouragment would be greatly appreciated!!! i am 24 and expecting a child in april....this will be the first boy in our family in several generations....i would love for my mom to be here to meet him!!
  • leftilou
    leftilou Member Posts: 5
    #7
    Steveshea, my husband was diagnosed in late Aug 03 with stage 4. he had a nephrectomy in early Sept. and a bone marrow transplant in Nov. Our doctors have all told us that this was his best chance and since the hospital that is involved in the clinical trial was close to our home we elected to follow this course of treatment. Hope all is still well with you and god bless.
  • ricky999
    ricky999 Member Posts: 1
    #8
    judia said:

    Hello! I am a 10cm. Stage IV RCC survivor. Am wondering why your oncologist didn't recommend Interluken 1 (IL-2)which is an FDA approved treatment for kidney cancer. I took this, along with the Interferon, and three lung mets are now gone. Response percentages are somewhat low, but it does happen. RCC can be beaten. Demand whatever treatments are out there. That, with aggressive surgery, is the only way. Hope you are doing well. You can reach me at: stellackcc@aol.com

    my husband had a kidney removed 3 years ago and parts of his lung 1 1/2 years ago. his doctor put him on interferon and it about killed him. he started interluken-2 tuesday this week. he was ok, even energized the first days. then, after a couple of days night sweats started and this morning, he felt like he was on interferon again, miserable. is this normal? will the treatment get better or worst do you think?
  • far2clever
    far2clever Member Posts: 2
    #9
    ricky999 said:

    my husband had a kidney removed 3 years ago and parts of his lung 1 1/2 years ago. his doctor put him on interferon and it about killed him. he started interluken-2 tuesday this week. he was ok, even energized the first days. then, after a couple of days night sweats started and this morning, he felt like he was on interferon again, miserable. is this normal? will the treatment get better or worst do you think?

    My husband went through the 1st round of IL2 June 28th. His reaction to this treatment was very bad. He only had 7 doeses, his body could not handle anymore. He has not improved since than and has only gone down hill since. i do not theink that we were informed of how severe the side effects are and aall the info we read said side effectw go away in about 3 days. NOT TRUe. Please let me know if you had better luck with IL2
  • kimba1973
    kimba1973 Member Posts: 1
    #10
    your story sound like my father's-his kidney cancer spread to the lungs, and the nodes grew similarly-he hasn't gone for treatment options yet-but was told that they will probably use Interluken 2-hey also said it was "slow moving" He is worried about it spreading fast before he gets any treatment. It's nice to hear someone elses story about stage 4 renal cancer and how they are coping-If you can provide me with any information about your prognosis I would love to chat more with you about it. Stay healthy
    -Kim
  • tracy75
    tracy75 Member Posts: 2
    #11
    far2clever said:

    My husband went through the 1st round of IL2 June 28th. His reaction to this treatment was very bad. He only had 7 doeses, his body could not handle anymore. He has not improved since than and has only gone down hill since. i do not theink that we were informed of how severe the side effects are and aall the info we read said side effectw go away in about 3 days. NOT TRUe. Please let me know if you had better luck with IL2

    Sorry to hear that husband had such a harsh reaction to the IL2. How is he doing now? How was it administered? Was it low dose or high dose? My father is going for a second opinion on which treatment to begin taking. He had his Kidney removed 2 years ago and now after the lung biopsy - we know the nodules in both his lungs have multiplied. He isnt in good health (he has lung disease as well) and were scared of the side affects on some of these treatments doing more harm to him. We were recommended a low dose of IL2.

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