stage 4 mestatic renal cell cancer

i was diagonose with stage 4 renal cell dec 2011 had kidney removed jan 2012 started chemo with sutent 1 week ago i have it in both lungs they are sayin numerous nimerous numerous cells have it in the lymp nodes live and small cell tissue they say i have around 1 year or so but has anyone beat this cancer at this stage of the disease
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  • foxhd
    foxhd Member Posts: 3,181
    stage 4
    Hang tough RS 57. I had my kidney removed last march. I am stage 4. I was informed that this march ( next month) might be my wordly exit. However, I just came back from playing golf at Myrtle beach for a week. Today I rode my Harley. Oh yeah. Also did some weight training and jogged 2 miles...I have lesions in my liver ,lungs, spine and pelvis.( that I know of). Have trust in your treatments and don't look back. I've already booked a couple motorcycle trips for the summer.Also bought new grips for my clubs. My treatment is different but we have to reley on the professionals to know what they are doing. I think less about beating this and more about living well.
  • jam66
    jam66 Member Posts: 55
    It can be done....
    Hi RS 57. I'm stage 4 as well. Had a nephrectomy in May of last year and my scan in September showed multiple lesions on the liver. I started sutent in October, and by January all tumors had disappeared! Sutent did the job. I also totally revamped my diet, and though not quite as active as foxhd here, I try to walk every day for a bit. :) I know how you feel, when I first learned of my diagnoses I scoured the web looking for survival stories. They are out there. Gerald White, author of "Three Months to Life" is just one example. You can order his book from Amazon...
    Take care, Jennifer
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jam66 said:

    It can be done....
    Hi RS 57. I'm stage 4 as well. Had a nephrectomy in May of last year and my scan in September showed multiple lesions on the liver. I started sutent in October, and by January all tumors had disappeared! Sutent did the job. I also totally revamped my diet, and though not quite as active as foxhd here, I try to walk every day for a bit. :) I know how you feel, when I first learned of my diagnoses I scoured the web looking for survival stories. They are out there. Gerald White, author of "Three Months to Life" is just one example. You can order his book from Amazon...
    Take care, Jennifer

    Stage 4 - it can be done, it has been done, it will be done
    RS 57 I'm guessing you're over the moon with the replies you've had from Fox and Jennifer. Fox is about to crash through the one year mark with at least 30 years to spare and Jennifer has done brilliantly on Sutent the actual drug that you've just started on! Both had extensive metastases, so your situation is no worse than theirs and probably a lot better than Fox's USED to be.

    I'm at roughly the same phase as you (about a month ahead of you) but will only have my first follow-up scan next week when the news may not be too good - like the three of you, I'm stage 4 and I'm also grade 4 with the rare chromophobe form that's now mostly sarcomatoid - not what one would choose for oneself. However, I'm not too despondent, for the reasons below.

    You may have already come across the inspirational stories at Steve Dunn's site

    http://cancerguide.org/stories.html

    Of those, one of the most relevant to us is that of Gerald White (whom Jennifer mentioned) who had a 20lb (they don't come any larger) kidney cancer. Getting on for 20 years ago he was predicted to live only a few months and is still going very strong all these years later.

    Also on Steve Dunn's site there is the superb article by Stephen Jay Gould, at

    http://cancerguide.org/median_not_msg.html

    which is one of the most encouraging things I've read. It's also very important to remember that since all of the above the scene has changed a lot with all the new therapies that have been developed in the last 5 years or so.

    Readers may be concerned to know that Jerry White has apparently been made a non-member by CSN. As soon as I learnt this I enquired why this has happened but I've had no reply so far from CSN. I think it was a very bad mistake by CSN. I have 2 guesses at the explanation. First, is that CSN very responsibly and wisely counsels us to have regard to our anonymity on these threads, which are open to be read by the whole world but Jerry has sacrificed his anonymity in his altruistic bid to offer additional help to everyone he can reach out to. This is similar to lawyer/client privilege - it's not mandatory - you can give it up if you choose to do so.

    My other guess is that some wrong-headed person has deemed that Jerry is plugging his excellent book and CD on this forum for mercenary reasons. If so, this is due to ignorance of his motives. The man has spent substantial sums of his own personal fortune, made by his brilliance as an inventor (engineer and physicist) to bring hope, comfort and help to complement and bolster the medical treatment of cancer sufferers. I hope CSN will verify this and re-instate Jerry asap in the best interests of all of us so that he can extend his good works even further.
  • garym
    garym Member Posts: 1,647

    Stage 4 - it can be done, it has been done, it will be done
    RS 57 I'm guessing you're over the moon with the replies you've had from Fox and Jennifer. Fox is about to crash through the one year mark with at least 30 years to spare and Jennifer has done brilliantly on Sutent the actual drug that you've just started on! Both had extensive metastases, so your situation is no worse than theirs and probably a lot better than Fox's USED to be.

    I'm at roughly the same phase as you (about a month ahead of you) but will only have my first follow-up scan next week when the news may not be too good - like the three of you, I'm stage 4 and I'm also grade 4 with the rare chromophobe form that's now mostly sarcomatoid - not what one would choose for oneself. However, I'm not too despondent, for the reasons below.

    You may have already come across the inspirational stories at Steve Dunn's site

    http://cancerguide.org/stories.html

    Of those, one of the most relevant to us is that of Gerald White (whom Jennifer mentioned) who had a 20lb (they don't come any larger) kidney cancer. Getting on for 20 years ago he was predicted to live only a few months and is still going very strong all these years later.

    Also on Steve Dunn's site there is the superb article by Stephen Jay Gould, at

    http://cancerguide.org/median_not_msg.html

    which is one of the most encouraging things I've read. It's also very important to remember that since all of the above the scene has changed a lot with all the new therapies that have been developed in the last 5 years or so.

    Readers may be concerned to know that Jerry White has apparently been made a non-member by CSN. As soon as I learnt this I enquired why this has happened but I've had no reply so far from CSN. I think it was a very bad mistake by CSN. I have 2 guesses at the explanation. First, is that CSN very responsibly and wisely counsels us to have regard to our anonymity on these threads, which are open to be read by the whole world but Jerry has sacrificed his anonymity in his altruistic bid to offer additional help to everyone he can reach out to. This is similar to lawyer/client privilege - it's not mandatory - you can give it up if you choose to do so.

    My other guess is that some wrong-headed person has deemed that Jerry is plugging his excellent book and CD on this forum for mercenary reasons. If so, this is due to ignorance of his motives. The man has spent substantial sums of his own personal fortune, made by his brilliance as an inventor (engineer and physicist) to bring hope, comfort and help to complement and bolster the medical treatment of cancer sufferers. I hope CSN will verify this and re-instate Jerry asap in the best interests of all of us so that he can extend his good works even further.

    Jerry White
    CSN if you are reading this please bring Mr. White back, his insite and experience is of great value here.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Jerry White
    CSN if you are reading this please bring Mr. White back, his insite and experience is of great value here.

    Jerry White
    Gary, I've not had a reply to my query to CSN about JWW's disappearance.

    I can understand that they have limited personnel and time resources and this site is too valuable to compromise with attending to trivial questions. However, I feel Jerry's presence here is so invaluable that I wonder if you could add your voice to mine in asking what is going on? I'm not aware of anyone else being one of the "disappeared" and want him back asap. His profile has also gone but his postings (including on the Caregivers forum) are extant so far.
  • garym
    garym Member Posts: 1,647

    Jerry White
    Gary, I've not had a reply to my query to CSN about JWW's disappearance.

    I can understand that they have limited personnel and time resources and this site is too valuable to compromise with attending to trivial questions. However, I feel Jerry's presence here is so invaluable that I wonder if you could add your voice to mine in asking what is going on? I'm not aware of anyone else being one of the "disappeared" and want him back asap. His profile has also gone but his postings (including on the Caregivers forum) are extant so far.

    Jerry White
    Done...I just sent CSN a request for reinstatement or explanation...we'll see.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Jerry White
    Done...I just sent CSN a request for reinstatement or explanation...we'll see.

    Jerry White
    Thanks Gary, let's hope someone finds time to reply - maybe the CSN operates a triage system!
  • renal scare 57
    renal scare 57 Member Posts: 16
    jam66 said:

    It can be done....
    Hi RS 57. I'm stage 4 as well. Had a nephrectomy in May of last year and my scan in September showed multiple lesions on the liver. I started sutent in October, and by January all tumors had disappeared! Sutent did the job. I also totally revamped my diet, and though not quite as active as foxhd here, I try to walk every day for a bit. :) I know how you feel, when I first learned of my diagnoses I scoured the web looking for survival stories. They are out there. Gerald White, author of "Three Months to Life" is just one example. You can order his book from Amazon...
    Take care, Jennifer

    im sorry my comment after rereading didnt make a lot of sense even to me lol i have stage 4 it is in liver, right lung totally filled with it, left lung partically filled and in lymp nodes and in soft tissue cell they told me i had less than 1 year. i had to come off sutent after 19 days tooo many side effects the doctor said we might try it again the 27 of march 2012 i already had the kidney removed i was just curious if anyone has this as bad as this and have they beat it


    thanks to all who has responded to my statement before
  • Limelife50
    Limelife50 Member Posts: 476

    im sorry my comment after rereading didnt make a lot of sense even to me lol i have stage 4 it is in liver, right lung totally filled with it, left lung partically filled and in lymp nodes and in soft tissue cell they told me i had less than 1 year. i had to come off sutent after 19 days tooo many side effects the doctor said we might try it again the 27 of march 2012 i already had the kidney removed i was just curious if anyone has this as bad as this and have they beat it


    thanks to all who has responded to my statement before

    Hi renal scare
    I am a little curious about your treatment.Just to let you know there is another website that I am registered to ,there seems to be more than a few people on this website who are advanced RCC so if you want I will post it for you if you would like.I just have one more question for you,why hasn't your oncologist offered to start you on a drug called HD-IL 2 I have read where not every one responds to this drug but the ones that do have a really good response some even much better than people on sutent,I am no doctor just sharing what I have read good luck hope to hear from you.
  • renal scare 57
    renal scare 57 Member Posts: 16

    Hi renal scare
    I am a little curious about your treatment.Just to let you know there is another website that I am registered to ,there seems to be more than a few people on this website who are advanced RCC so if you want I will post it for you if you would like.I just have one more question for you,why hasn't your oncologist offered to start you on a drug called HD-IL 2 I have read where not every one responds to this drug but the ones that do have a really good response some even much better than people on sutent,I am no doctor just sharing what I have read good luck hope to hear from you.

    in search of right answers
    Limelife 50 what i was trying to say is they said i would not make it that i wasnt strong enough for the iv therpy and my best hope would be sutent.They said it would not cure it but but maybe buy me a few months. for as sick as i was for just those few days i seriously dont know if i want to try it again. Im suppose to make a decision by the 26 said maybe we culd drop the dose to 37.5 mg but if it is still gonna make the that sick for just a few months,Im just so confused. they said there was several several several nodules in both lungs some measuring up to 3.5 cin it is in the liver lymp nodes soft cell tissue. i look on here and see alot of good results and i just dont know what to do I ask the good Lord above to guide me with the right decision. As far as your website im totally open to all sugestions and HELP for knowledge, I have so many reasons for living and not a one for dying but if that is the case i want better days for my last days so confused
  • renal scare 57
    renal scare 57 Member Posts: 16

    Hi renal scare
    I am a little curious about your treatment.Just to let you know there is another website that I am registered to ,there seems to be more than a few people on this website who are advanced RCC so if you want I will post it for you if you would like.I just have one more question for you,why hasn't your oncologist offered to start you on a drug called HD-IL 2 I have read where not every one responds to this drug but the ones that do have a really good response some even much better than people on sutent,I am no doctor just sharing what I have read good luck hope to hear from you.

    in search of right answers
    Limelife 50 what i was trying to say is they said i would not make it that i wasnt strong enough for the iv therpy and my best hope would be sutent.They said it would not cure it but but maybe buy me a few months. for as sick as i was for just those few days i seriously dont know if i want to try it again. Im suppose to make a decision by the 26 said maybe we culd drop the dose to 37.5 mg but if it is still gonna make the that sick for just a few months,Im just so confused. they said there was several several several nodules in both lungs some measuring up to 3.5 cin it is in the liver lymp nodes soft cell tissue. i look on here and see alot of good results and i just dont know what to do I ask the good Lord above to guide me with the right decision. As far as your website im totally open to all sugestions and HELP for knowledge, I have so many reasons for living and not a one for dying but if that is the case i want better days for my last days so confused
  • renal scare 57
    renal scare 57 Member Posts: 16

    in search of right answers
    Limelife 50 what i was trying to say is they said i would not make it that i wasnt strong enough for the iv therpy and my best hope would be sutent.They said it would not cure it but but maybe buy me a few months. for as sick as i was for just those few days i seriously dont know if i want to try it again. Im suppose to make a decision by the 26 said maybe we culd drop the dose to 37.5 mg but if it is still gonna make the that sick for just a few months,Im just so confused. they said there was several several several nodules in both lungs some measuring up to 3.5 cin it is in the liver lymp nodes soft cell tissue. i look on here and see alot of good results and i just dont know what to do I ask the good Lord above to guide me with the right decision. As far as your website im totally open to all sugestions and HELP for knowledge, I have so many reasons for living and not a one for dying but if that is the case i want better days for my last days so confused

    ct follow up
    guess its a good place to air my thoughts had my ct scan yesterday and will have mri of the brain monday back to doctor tuesday said the cancer they thought had spread even more. i hope they are wrong but only time will tell if it hadnt spread to much more gonna try another chemo to see if i can take it. may God be with each and everyone keep the faith
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    ct follow up
    guess its a good place to air my thoughts had my ct scan yesterday and will have mri of the brain monday back to doctor tuesday said the cancer they thought had spread even more. i hope they are wrong but only time will tell if it hadnt spread to much more gonna try another chemo to see if i can take it. may God be with each and everyone keep the faith

    Next step
    Sorry you're having such a tough time. One thing's for sure - even the brightest and the best of the experts don't know it all in this sphere. However, we do know that we're all so different that many of the drugs have very different effects on different patients.

    Where are you being treated at present? Hang in there because they may find just the right treatment for you. You got it right when you said "keep the faith".
  • alice124
    alice124 Member Posts: 896

    ct follow up
    guess its a good place to air my thoughts had my ct scan yesterday and will have mri of the brain monday back to doctor tuesday said the cancer they thought had spread even more. i hope they are wrong but only time will tell if it hadnt spread to much more gonna try another chemo to see if i can take it. may God be with each and everyone keep the faith

    stage 4
    Renal scare - don't give up. I know at a time like this it's difficult to think positively, but new treatments are coming out all the time. Plus there's convincing documentation out there that we can help ourselves through positive thinking and guided imagery. If I'm repeating what you've already heard, my apologies. But you might want to check out Gerald White's website and book and cd. It has helped many. Stay positive and strong. Wishing you the best.
  • foxhd
    foxhd Member Posts: 3,181
    alice124 said:

    stage 4
    Renal scare - don't give up. I know at a time like this it's difficult to think positively, but new treatments are coming out all the time. Plus there's convincing documentation out there that we can help ourselves through positive thinking and guided imagery. If I'm repeating what you've already heard, my apologies. But you might want to check out Gerald White's website and book and cd. It has helped many. Stay positive and strong. Wishing you the best.

    living forward
    RS57, You've got all of our support, best wishes and good Karma coming your way. Stay strong my friend.
  • This comment has been removed by the Moderator
  • Fishknees
    Fishknees Member Posts: 73
    unknown said:

    This comment has been removed by the Moderator

    Good luck
    RS57 good luck to you. I don't know what to say; but, I will say prayers for you.

    Charlie Brown I hope you Dad is doing better. Those insurance companies are horrible. Sorry I don't know anything about the Vitamin C.
  • Donb323
    Donb323 Member Posts: 3
    RS57
    I am new to this

    RS57
    I am new to this board.

    I first found that I had Renal Cell Carcinoma, in May of 2003.I had a radical nyphrectomy,of the left kidney in July 2003.But the cancer had already gotten into my lymp nodes.

    But I was diagnoised with stage 4 RCC in March of 2006.I have been on three different medications since then.( sutent ,infinitor,nexavar)Sutent has been the best so far for me.I am awaiting delivery on the newest drug out there now.Inixtib,I think that's how you spell it.I'm hoping this will work to slow this cancer down.
    Don't give up hope. When I was first told of my cancer there was only one treatmeant available.Now there is like six or seven different drugs out there with more on the way.
    All I can say is even the doctors can't tell you exactly how long you have.Just remember to live each and every day to it's fullest.
    My prayers are with you.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Donb323 said:

    RS57
    I am new to this

    RS57
    I am new to this board.

    I first found that I had Renal Cell Carcinoma, in May of 2003.I had a radical nyphrectomy,of the left kidney in July 2003.But the cancer had already gotten into my lymp nodes.

    But I was diagnoised with stage 4 RCC in March of 2006.I have been on three different medications since then.( sutent ,infinitor,nexavar)Sutent has been the best so far for me.I am awaiting delivery on the newest drug out there now.Inixtib,I think that's how you spell it.I'm hoping this will work to slow this cancer down.
    Don't give up hope. When I was first told of my cancer there was only one treatmeant available.Now there is like six or seven different drugs out there with more on the way.
    All I can say is even the doctors can't tell you exactly how long you have.Just remember to live each and every day to it's fullest.
    My prayers are with you.

    Welcome Donb
    Not many people join this board with a message as informative and inspiring as that. You've obviously done very well so far and if this forum can strengthen your elbow yet further everyone will be delighted. It might help some of us to know what you've found most useful in your battle over the past 9 or so years. Have you been on other forums, explored mind/body medicine approaches, sought second opinions, been in clinical trials.

    You've plainly chosen the thread that you've joined first very appropriately and your experience and knowledge will be much appreciated here.
  • Donb323
    Donb323 Member Posts: 3

    Welcome Donb
    Not many people join this board with a message as informative and inspiring as that. You've obviously done very well so far and if this forum can strengthen your elbow yet further everyone will be delighted. It might help some of us to know what you've found most useful in your battle over the past 9 or so years. Have you been on other forums, explored mind/body medicine approaches, sought second opinions, been in clinical trials.

    You've plainly chosen the thread that you've joined first very appropriately and your experience and knowledge will be much appreciated here.

    Thanks T_W,for the kind
    Thanks T_W,for the kind words.
    It has been a long uphill road.If it were not for my wife,family and Oncology team at UCD(University of California Davis) I believe I would have been lost along time ago.
    One can only hope for the best.When I first found out I had cancer. My Granddaughter was only three months old.I promised her that I would be around for as long as I could.Since then my daughter,has given me two gandsons and another granddaughter. This has probably given me the most strength,for this fight.
    The first three years was more or less nromal.I did not have any indications of having cancer. Just every 12 weeks I would have to go in for chest x-rays.Then I had a change in insurance,that led me to another medical facility.(From Kiaser to UCD).That's when I found out I was stage four.
    The past six years have had its ups and downs.It hasn't been easy,but atleast I'm still here.I have had enough C-T scans that I should probably be glowing.The medications I have been on have not been fun!I started with 50mg. of Sutent for over 16 months. Then on to Infinitor.This only lasted two months,the side effects were too much for me.(Bood sugars went ski high)Then came Nexavar. I thought this one was going to work for me,but the side effects did not agree with me.(Zapped my strength ).Took a break for a couple of months .Then after this break found out my cancer was starting to run amuck again.So back on the Sutent.Things are starting to grow again,so we will be trying the next drug avalible Inlyta.I'll keep you posted.