Renal Cell Carcinoma

winterblitz
winterblitz Member Posts: 2
edited March 2014 in Kidney Cancer #1
Is there anyone out there that is taking Nexavar,and if so, how long and is it helping? My spouse has been on Nexavar for about 2 weeks now with mild side effects.The cancer has spread to the lungs,lymphnodes and bones. We are hoping that there is someone out there that has been on Nexavar for awhile that can share info on how its worked for them

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • dleather
    dleather Member Posts: 11
    #3
    Dear Winterblitz: I am sorry to hear about your spouse. I guess you know by now that statistics are not promising for those of us with RCC. But there is hope. In the last few years new drugs have made almost certain death much more unlikely than in years past. Three years ago I was diagnosed with RCC... large grapefruit size tumor in the right kidney with spreading to both lungs and bones of both legs with an invasion into the vena cava, the main artery returning blood to the heart. My story is loooooong. Much too long to write here. Briefly I was put on Gemzar & Xeloda. It took six months to kill those tumors because of their size: left lung tumor was walnut size, right was egg size. Surgery removed tumors from vena cava and left leg. Radiation killed tumor in right leg. Cancer returned, one in each lung. Back on Gemzar / Xeloda. Cancers died again with only two months of chemo. Two cancers returned again, this time to the left lung. Gemzar / Xeloda would not kill them this time after four months of treatment. So they recommended Avastin & Tarceva. That did the trick (I think it was four months). Was in remission six months when number ten surfaced in left lung. Back on Avastin / Tarceva. Don't know if number ten is dead yet but will know next Tuesday because I visit M.D. Anderson Cancer Clinic, Houston, Texas, where all this wonderful strategy was fabricated and I'll find out. Sorry I can't reply to your Nexavar inquiry but thought you would want to know about the other drugs. Lymph nodes may be a whole different story, but if you want to talk by phone reply to this message and we can hook up. Hope this is some encouragement to you. I'll pray for you and your spouse.
  • adriaranguren
    adriaranguren Member Posts: 10
    #4
    dleather said:

    Dear Winterblitz: I am sorry to hear about your spouse. I guess you know by now that statistics are not promising for those of us with RCC. But there is hope. In the last few years new drugs have made almost certain death much more unlikely than in years past. Three years ago I was diagnosed with RCC... large grapefruit size tumor in the right kidney with spreading to both lungs and bones of both legs with an invasion into the vena cava, the main artery returning blood to the heart. My story is loooooong. Much too long to write here. Briefly I was put on Gemzar & Xeloda. It took six months to kill those tumors because of their size: left lung tumor was walnut size, right was egg size. Surgery removed tumors from vena cava and left leg. Radiation killed tumor in right leg. Cancer returned, one in each lung. Back on Gemzar / Xeloda. Cancers died again with only two months of chemo. Two cancers returned again, this time to the left lung. Gemzar / Xeloda would not kill them this time after four months of treatment. So they recommended Avastin & Tarceva. That did the trick (I think it was four months). Was in remission six months when number ten surfaced in left lung. Back on Avastin / Tarceva. Don't know if number ten is dead yet but will know next Tuesday because I visit M.D. Anderson Cancer Clinic, Houston, Texas, where all this wonderful strategy was fabricated and I'll find out. Sorry I can't reply to your Nexavar inquiry but thought you would want to know about the other drugs. Lymph nodes may be a whole different story, but if you want to talk by phone reply to this message and we can hook up. Hope this is some encouragement to you. I'll pray for you and your spouse.

    I am glad to know there are people with whom I will be able to talk abut this, and probably share ideas and experiences. My dad was diagnosed with renal cell carcinoma on November of last year. He had a nephractomy of one of his kidneys, but unfortunately he had methastasis, wich formed another tumor in his fourth vertebrae, wich also had to be taken out. Fortunately both surgeries went very well.Now, they have found small tumors in his lungs. His doctor has decided to start treatment with Sorafenib(Nexavar). I would appreciate it if someone could let me know about some side effects of this medicine and also how effective it has been for you.My dad will start taking them next week and I want to know what to expect.My dad is 50 years old,I hope he has the strength to overcome this. thank you for your help and time
  • praz2him
    praz2him Member Posts: 12
    #5
    I was diagnoised with renal cell in May of 2003.They removed my kidney and we were told they got all the cancer.In 2004 they found I had lung cancer caused by the rcc.Spent the summer of 2004 getting interleuken treatments.Good Friday of 2005 they found a brain tumor caused by rcc.had it removed two days later.Now one of my lung tumors has started to show some growth.While I don't know about your husbands medication I can tell you that I keep on enjoying my life.I di get depressed sometimes but my good days outweigh my bad.My family and my Church have been a big part in me continuing to survive.Plus my faith in JESUS.i know I will die someday but I don't let that concern mje.I am strong in my faith and keep a positive attitude that I will live to an old age.I may have cancer,but cancer doesn't have me!!.I don't care about statistics.I am a survivor not a statistic.I am currently taking sutent (sunitinib0 to try to shrink my tumors in my lungs.May the LORD Bless you husband greatly in this time of trial.
  • praz2him
    praz2him Member Posts: 12
    #6
    I was diagnoised with renal cell in May of 2003.They removed my kidney and we were told they got all the cancer.In 2004 they found I had lung cancer caused by the rcc.Spent the summer of 2004 getting interleuken treatments.Good Friday of 2005 they found a brain tumor caused by rcc.Had it removed two days later.Now one of my lung tumors has started to show some growth.While I don't know about your husbands medication I can tell you that I keep on enjoying my life.I do get depressed sometimes but my good days outweigh my bad.My family and my Church have been a big part in me continuing to survive.Plus my faith in JESUS.i know I will die someday but I don't let that concern me.I am strong in my faith and keep a positive attitude that I will live to an old age.I may have cancer,but cancer doesn't have me!!.I don't care about statistics.I am a survivor not a statistic.I am currently taking sutent (sunitinib) to try to shrink my tumors in my lungs.May the LORD Bless you husband greatly in this time of trial.
  • hyssop
    hyssop Member Posts: 3
    #7
    praz2him said:

    I was diagnoised with renal cell in May of 2003.They removed my kidney and we were told they got all the cancer.In 2004 they found I had lung cancer caused by the rcc.Spent the summer of 2004 getting interleuken treatments.Good Friday of 2005 they found a brain tumor caused by rcc.Had it removed two days later.Now one of my lung tumors has started to show some growth.While I don't know about your husbands medication I can tell you that I keep on enjoying my life.I do get depressed sometimes but my good days outweigh my bad.My family and my Church have been a big part in me continuing to survive.Plus my faith in JESUS.i know I will die someday but I don't let that concern me.I am strong in my faith and keep a positive attitude that I will live to an old age.I may have cancer,but cancer doesn't have me!!.I don't care about statistics.I am a survivor not a statistic.I am currently taking sutent (sunitinib) to try to shrink my tumors in my lungs.May the LORD Bless you husband greatly in this time of trial.

    My husband has clear cell kidney cancer, had a radical neprectomy and has metastases in lungs. He tried interferon and did not work and some cancer grew. Is starting Nexavar this week. Will watch this site and report in. Looks like so much I find about Nexavar is so good.
  • dreamer66
    dreamer66 Member Posts: 1
    #8
    adriaranguren said:

    I am glad to know there are people with whom I will be able to talk abut this, and probably share ideas and experiences. My dad was diagnosed with renal cell carcinoma on November of last year. He had a nephractomy of one of his kidneys, but unfortunately he had methastasis, wich formed another tumor in his fourth vertebrae, wich also had to be taken out. Fortunately both surgeries went very well.Now, they have found small tumors in his lungs. His doctor has decided to start treatment with Sorafenib(Nexavar). I would appreciate it if someone could let me know about some side effects of this medicine and also how effective it has been for you.My dad will start taking them next week and I want to know what to expect.My dad is 50 years old,I hope he has the strength to overcome this. thank you for your help and time

    just read your message on the csn. My husband has been on nexavar for 3 months now and has done really well. Side effects are minimal considering all other treatments. Results have been good as far as his mri's. Tumors are shrinking. Main side effect for him has been fatigue. Watch for blisters on hands and feet. so far we are very impressed. If I can help you in any way please let me know and all are in our prayers.
  • adriaranguren
    adriaranguren Member Posts: 10
    #9
    dreamer66 said:

    just read your message on the csn. My husband has been on nexavar for 3 months now and has done really well. Side effects are minimal considering all other treatments. Results have been good as far as his mri's. Tumors are shrinking. Main side effect for him has been fatigue. Watch for blisters on hands and feet. so far we are very impressed. If I can help you in any way please let me know and all are in our prayers.

    I am glad to hear from you, my dad had to stop his treatment because of the side effects and now started again (after one month). He is lossing hair, has blisters in his feet and some other effects. Please let me know how your husband is doing. My dad is really loosing hope, I don't want that to happen. He is still fighting but is sure it is impossible to get rid of tumors with this treatment,can you please let me know what the doctor says, is it possible.Thank you so much, hope to hear from you soon
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator

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