Update Kidney Cancer Treatments

danbren2
danbren2 Member Posts: 311
edited June 2013 in Kidney Cancer #1

I had my PET/CT Scan with contrast done last Friday.  It was a really bad day, whatever could have gone wrong went wrong.  We arrived at Georgetown Hospital at 9:20 am and left there at 4:40 pm.  The best part of the day was that all the test were finally able to be done.  My last scan was in March with no defintative cancer showing.  I will find out the results on Friday, I am hoping and praying that I will be ok.  It really is scary just waiting to hear, I am praying that the tests will be clear again! I will let everyone know about the results Friday afternoon, my appointment is at 1:00 pm.  Thank you for being here and for all the well wishes and prayers!

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Comments

  • Galrim
    Galrim Member Posts: 307
    Lung mets

    Youre not posting all details on youre tnm, grade etc, so take the following words with some precaution. But, less than a miracle might do it. Total complete resection of RCC lung mets actually gives approx. a 30 percent chance of long term survival.

    /G

  • MDCinSC
    MDCinSC Member Posts: 574
    Out of my league!

    But I'm here to talk, support and cheer whenever you need it.    I also listen well.

    In the short time I have been on this discussion board, I have heard inspiring stories of courage and great success in the face of tremendous odds.  This isn't hyperbole, the stories are here.  The support is here for whatever the diagnosis turns out to be.

    Praying for all the best for you!

    Michael

  • danbren2
    danbren2 Member Posts: 311
    Galrim said:

    Lung mets

    Youre not posting all details on youre tnm, grade etc, so take the following words with some precaution. But, less than a miracle might do it. Total complete resection of RCC lung mets actually gives approx. a 30 percent chance of long term survival.

    /G

    Many Thanks!

    You are sounding just like my Doc, that is exactly what he has said! Thank you so much for making my day a little brighter!

  • danbren2
    danbren2 Member Posts: 311
    MDCinSC said:

    Out of my league!

    But I'm here to talk, support and cheer whenever you need it.    I also listen well.

    In the short time I have been on this discussion board, I have heard inspiring stories of courage and great success in the face of tremendous odds.  This isn't hyperbole, the stories are here.  The support is here for whatever the diagnosis turns out to be.

    Praying for all the best for you!

    Michael

    All Prayers are Welcome

    I wish I had of found this sight in 2011.  In just the few short post I have read, I have learned alot, and feel that this battle is being fought everywhere by so many of us!  I am so thankful for the support and the prayers, and just to be able to vent when I need to give my husband a break! Thanks for being here, it is so extremely helpful!

  • alice124
    alice124 Member Posts: 896 Member
    danbren2 said:

    All Prayers are Welcome

    I wish I had of found this sight in 2011.  In just the few short post I have read, I have learned alot, and feel that this battle is being fought everywhere by so many of us!  I am so thankful for the support and the prayers, and just to be able to vent when I need to give my husband a break! Thanks for being here, it is so extremely helpful!

    In the right spot

    Admittedly biased here, but this site IMHO has the most compassionate and understanding supporters on the web. Post anytime you need someone to listen or wring out the tear towel. Most of us have been there. Stay strong.

  • dhs1963
    dhs1963 Member Posts: 513
    alice124 said:

    In the right spot

    Admittedly biased here, but this site IMHO has the most compassionate and understanding supporters on the web. Post anytime you need someone to listen or wring out the tear towel. Most of us have been there. Stay strong.

    If you have to have a met, lung is the best

    Having metastatic kidney cancer is not a good thing, of course.  But Lung Met(s) that can be removed surgically has the best outcome.  I am in the same boat, as I had the Kidney removed 1 year ago. At six months (in dec, 2012), a growth was identified on the lung.  It was resected.  My 3 month scans were clear; The Doctor I saw made it clear that, when treating my cancer (Sarcomitoid), the best treatment is surgical resection when possible.  Save the drugs for when you need them.

    The studies of Adjuvant theropies have not had the desired results.  Some are showing decreased long term survival; none are showing statistically significant increased survival.

     

  • danbren2
    danbren2 Member Posts: 311
    alice124 said:

    In the right spot

    Admittedly biased here, but this site IMHO has the most compassionate and understanding supporters on the web. Post anytime you need someone to listen or wring out the tear towel. Most of us have been there. Stay strong.

    Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

    You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

  • Djinnie
    Djinnie Member Posts: 945
    danbren2 said:

    Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

    You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

    Best wishes

    Hi Danbren, I am sorry you are having to go through this, cancer is not easy company. Determination, a hope filled heart and your faith can pull the rug from under any statistics. From where I am standing, you sound as if you have all the right ingredients to win through.

    All the best with your scans next month, we will be routing for you, and you are automatically on my prayer list:) 

    Djinnie x

  • Galrim
    Galrim Member Posts: 307
    danbren2 said:

    Many Thanks!

    You are sounding just like my Doc, that is exactly what he has said! Thank you so much for making my day a little brighter!

    Just to expand a little on the topic...

    Obviously metastatic disease is not somehting that in general increases your longterm odds, but, and its an important but:

    - Patients with lung mets posing AFTER the original curatively intended nephrectomy have a much better outlook than patients with so called synchronous mets.

    - If you have a relapse and new mets to the lungs, and a complete resection is possible, the above thirty percent odds doesnt change.

    Have in mind that I am only referring here to lung mets, and only those were complete resection is possible.

    As for addltional treatment, its pretty much standard that if complete surgically removal is obtained control regimes are all that is done. In very few cases adjuvant therapy might be deemed suitable. If you are unclear about this you should discuss that part with your oncologist, and Im stressing oncologist, not GP or the surgeons.

    Lastly, when NED, have in mind that your lifestyle and general health is an important barricade against any MCC getting a chance to manifest as something malign.

    /G

  • Blueraidermike
    Blueraidermike Member Posts: 25
    danbren2 said:

    Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

    You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

    You are a case study of n=1

    Do not focus on the stats.    Understand your personal case.   Make sure you have the best ONC for RCC you can get access too.    Think about what you can do (exercise, eat the right diet, undertand future theraphys) versus what may or may not happen.     Empower your self - you are in charge, not your doctor - YOU.

    You have a lot to live for!

  • cran1
    cran1 Member Posts: 139
    Wishing you the best

    Wishing you the best Danbren2.

  • cran1
    cran1 Member Posts: 139
    Wishing you the best

    Wishing you the best Danbren2.

  • dhs1963
    dhs1963 Member Posts: 513
    danbren2 said:

    Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

    You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

    The message is not the median

    If you look at the survival statistics most of us should not be here.  My msRCC (solitary lung met) gave me a median survival rate of 8 months.  So I am now 4 months into bonus time, and "NED".

    The survival rates are statistical, and based on old data.  They do not know the 5 year rates for people diagosed in 2012....they will know it in 2017.  Treamtents are improving...better meds, better imaging, and less invasive surgeries. 

    Best advice is to enjoy each day.  Worry about the numbers when buying life insurance.  If anyone is willing to sell it to us, let me know :)

    Also, my Dr says, with operable met, the 5 year rate is more like 50%.  You are NED. Celibrate that.

    (and disregard my future post when I am feeling down about the odds).

  • danbren2
    danbren2 Member Posts: 311
    dhs1963 said:

    The message is not the median

    If you look at the survival statistics most of us should not be here.  My msRCC (solitary lung met) gave me a median survival rate of 8 months.  So I am now 4 months into bonus time, and "NED".

    The survival rates are statistical, and based on old data.  They do not know the 5 year rates for people diagosed in 2012....they will know it in 2017.  Treamtents are improving...better meds, better imaging, and less invasive surgeries. 

    Best advice is to enjoy each day.  Worry about the numbers when buying life insurance.  If anyone is willing to sell it to us, let me know :)

    Also, my Dr says, with operable met, the 5 year rate is more like 50%.  You are NED. Celibrate that.

    (and disregard my future post when I am feeling down about the odds).

    Smile on my face

    Dear dhns1963,

         Thank you for putting me in my place, and putting a smile on my face.  You are right, yesterday is gone, today we are here, and tomorrow are gifts!  Thanks for reminding me, and making me thankful for today and to stop wasting time worrying about tomorrow!

         I fully plan to be here for your down days and to remind you to smile and keeping living for today and not to worry about tomorrow!

  • alice124
    alice124 Member Posts: 896 Member
    danbren2 said:

    Thank you Alice for your reply.  All of the replies have been great, and it seems things are not looking too good for me with what people are saying.  I will keep praying and hope that God is willing to see that I get more than the 5 years statistics are saying.  Everyone has been extremely helpful and candid.  I will be asking my Oncoligist more questions about my Cancer on the 14th of June.  I will be having PET/CT Scan with contrast on the 7th of June and results on the 14. 

    You know someone has to make up that 20 and 30% survivial rate for Stage IV Kidney Cancer and I am planning on being one of them.  Please remember to include me in your prayers, and I will most definately include you in mine!  Keep the faith!

    Stay clear of those statistics!

    Let me repeat what I tell my husband. Those statistics are dated and do not take into account the numerous new treatments being tested nor have they been updated with the success being experienced by so many in trials now. Those trials are still in progress (many showing remarkable success, e.g., Fox and John), but that success won't be documented in the survival statistics as long as the trials are still ongoing. Read the thread by "BDS" on "What's coming down the pike". The advances seem to be coming faster than our ability to keep up with them. So surround yourself with this positive info, no negative stuff allowed; it only feeds the cancer. When John was first diagnosed (October 2011), I googled and googled and googled, and what I found was depressing. John was given months, not years.  John is now five months short of the two year mark and going strong. I fullly expect him to bury me!Smile

    I hold on to the point made here a year or two ago in discussing the many options now available to late stage kidney cancer patients. Kidney cancer is no longer a fatal disease; it's a chronic one. I believe that.  

     

  • todd121
    todd121 Member Posts: 1,448 Member
    dhs1963 said:

    If you have to have a met, lung is the best

    Having metastatic kidney cancer is not a good thing, of course.  But Lung Met(s) that can be removed surgically has the best outcome.  I am in the same boat, as I had the Kidney removed 1 year ago. At six months (in dec, 2012), a growth was identified on the lung.  It was resected.  My 3 month scans were clear; The Doctor I saw made it clear that, when treating my cancer (Sarcomitoid), the best treatment is surgical resection when possible.  Save the drugs for when you need them.

    The studies of Adjuvant theropies have not had the desired results.  Some are showing decreased long term survival; none are showing statistically significant increased survival.

     

    Adjuvant Therapies

    I'm very interested in which adjuvant studies have shown decreased long term survival. What drugs/studies are you referring to? Are you referring to studies that are complete? Or early results from some of the ongoing studies?

    I'd thought there weren't very many studies complete using any of the new drugs (if any at all)? Since they haven't had drugs prior to these new drugs that were effective in metastatic disease (other than HD-IL2), I'm not sure what they would have studied unless it was HD-IL2? 

    Thanks!

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    todd121 said:

    Adjuvant Therapies

    I'm very interested in which adjuvant studies have shown decreased long term survival. What drugs/studies are you referring to? Are you referring to studies that are complete? Or early results from some of the ongoing studies?

    I'd thought there weren't very many studies complete using any of the new drugs (if any at all)? Since they haven't had drugs prior to these new drugs that were effective in metastatic disease (other than HD-IL2), I'm not sure what they would have studied unless it was HD-IL2? 

    Thanks!

    Todd

    Adjuvant therapies

    Todd, there's a number of completed studies with the newer targeted therapies showing zero benefit from using them for adjuvant purposes. 

    Don't get too jumpy though about the observation that there has been some evidence of reduced long term survival - as I recall , it's not a pronounced effect - otherwise no-one would be continuing to do such studies, although there seems to be very little theoretical justification for conducting them.  

  • dhs1963
    dhs1963 Member Posts: 513

    Adjuvant therapies

    Todd, there's a number of completed studies with the newer targeted therapies showing zero benefit from using them for adjuvant purposes. 

    Don't get too jumpy though about the observation that there has been some evidence of reduced long term survival - as I recall , it's not a pronounced effect - otherwise no-one would be continuing to do such studies, although there seems to be very little theoretical justification for conducting them.  

    Actually, there are studies that show negative benefits

    Targeted therapies are not curative.  Rather, they are to slow or stop the progression.  The idea is they target the pathways which enable tumor growth (as explained by one of my Dr's).  

    Often, the tumor will adapt to the targeted therapy.  When done Adjuvantly, the adaptation occurs with smaller tumors.  Then, when something observable is growing, it is resistant to that drug.  

    The net result is you might have a longer disease free interval (by months), but the survival time is not any longer, and possibly shorter.  And you have the toxcicity of the medicine for no benifit.

    You save the systemic therapies for when you need them.  Surgery first, then drugs if there is not a sugical option.  Less that optimal, but that is life with RCC.

  • GSRon
    GSRon Member Posts: 1,303 Member
    cran1 said:

    Wishing you the best

    Wishing you the best Danbren2.

    Stats lie..

    Those stats do lie.. as others have said.. they are old and do not take in to account all that has been learned since those stats were printed.  In fact, if you can read this.. then you are reading a posting from a ghost..!   Oh wait.. I am real and alive...!  Many of us have passed the stats... me included... and I plan to be here a long time...

    Practice for the TT Races start in less than an hour... life is good..!!

    Cheers.!

    Ron

  • todd121
    todd121 Member Posts: 1,448 Member
    dhs1963 said:

    Actually, there are studies that show negative benefits

    Targeted therapies are not curative.  Rather, they are to slow or stop the progression.  The idea is they target the pathways which enable tumor growth (as explained by one of my Dr's).  

    Often, the tumor will adapt to the targeted therapy.  When done Adjuvantly, the adaptation occurs with smaller tumors.  Then, when something observable is growing, it is resistant to that drug.  

    The net result is you might have a longer disease free interval (by months), but the survival time is not any longer, and possibly shorter.  And you have the toxcicity of the medicine for no benifit.

    You save the systemic therapies for when you need them.  Surgery first, then drugs if there is not a sugical option.  Less that optimal, but that is life with RCC.

    Could you name some? Or tell where the info came from?

    Could you please name some of the drugs studied, or maybe name some of the studies? Or tell me where to look? I'd like to see these papers.

    I was under the impression that the new drugs like Votrient and Everolimus and some of the others were so new, and it takes so long to do these studies (5-10 years), that there were no completed studies.

    I'm interested in knowing which drugs were studied and how, and for how long, etc. I'd like to see the papers.

    Or could you tell me where you got the information? Are you relaying information your oncologist told you?

    I would hope if they've found negative benefits, it shouldn't be ethical to continue to study similar drugs and they wouldn't do it. Unless the negative benefit was so slight that it wasn't clear if it was neutral or negative....

    Thanks,

    Todd