Sarcomatoid

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  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    #22
    Texas_wedge said:

    Thanks
    Thanks, Olsera, and long may you continue to 'not sweat the small stuff' and to celebrate your new-found appreciation of all the good things life has to offer.

    I'm in the same boat
    Althought this is my first posting, I have followed the site for several months and consider many here to already be friends.

    I had a radical nephrectomy in September (9-7-11)at Northside Atlanta. The tumor was 17.5cm (and I am not a large guy). Pathology showed T2b N0 M0 but grade 4 with sarcomatoid features. I had a follow-up set of MRI's in April which are clear. My urologist seems optimistic saying there is only a 20-30% chance of recurrance since he thinks he "got it all". I am obviously concerned about it more than the doctor and am probably reading too much on the internet that I don't have the knowledge to fully comprehend. The leads that all of you have provided are really helpful.

    Thanks to all of you for being there. It is nice to know that I am sharing this experience with others.

    John
  • Limelife50
    Limelife50 Member Posts: 476
    #23
    Texas_wedge said:

    Thanks
    Thanks, Olsera, and long may you continue to 'not sweat the small stuff' and to celebrate your new-found appreciation of all the good things life has to offer.

    Hi Tex
    Would you please explain that pic ,maybe i am wrong but is that the olympic torch
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #24
    Limelife50 said:

    Hi Tex
    Would you please explain that pic ,maybe i am wrong but is that the olympic torch

    Got it in one Mike
    That was the Olympic Torch arriving at the Carnoustie Golf Club. You've also saved me from the otherwise inevitable quips from Gary and Fox - 'Do you really look that young?' or, more probably, 'Is the torch-bearer your great grandson?'

    On Monday I emailed the UK's leading expert on exercise for cancer patients to arrange to meet for a chat (she's offered to comment on my current exercise programme and I want to pick her brains on the mechanisms by which exercise helps to combat cancer). She wrote back that she wouldn't be available before Wednesday because on Tuesday she was running with the Olympic Torch and then going to be interviewed at Scone Palace for a radio broadcast. I thought that was a pretty lame excuse but I let it go ;-)

    On Tuesday evening I won a singles match in a knockout tournament being played on the Carnoustie Championship Course. There are 5 clubs at Carnoustie, based around the 3 courses there and I'm a member of a couple of them. I was on my way in to the Carnoustie G.C. to put my name through in the competition when I saw a large celebratory crowd outside with wine-glasses in their hands. I figured it might be connected with the Club Championship but it all seemed a bit extravagant for that. Then a piper struck up a fine bit of music and people began to disappear inside. I noticed a car in the road right at the entrance path to the Clubhouse and saw a chap get in to move it. So, I approached his car and asked what the event was. He proudly announced "My Father has just carried the Olympic Torch into the Club!"

    So, I went on in, past the lad who was holding the torch and decided to take a snap with my iPhone camera. Amusingly, after a 4-ball there the following morning, 2 of my playing partners enthusiastically showed me pics and videos they'd taken the previous day. Each of them had driven into our County Town (Forfar) to see the Torch progress and take photos, unaware that the Torch was to come down through the County to Carnoustie. So, I was able to produce my 'phone and say "Nice pictures, and here it is in the Club last night!"

    I hope your recovery continues well and that your Family is suitably proud of the way you gritted your teeth and bounced back. Clearly you're still sharp enough to have been the first to identify the Torch!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #25
    Texas_wedge said:

    Got it in one Mike
    That was the Olympic Torch arriving at the Carnoustie Golf Club. You've also saved me from the otherwise inevitable quips from Gary and Fox - 'Do you really look that young?' or, more probably, 'Is the torch-bearer your great grandson?'

    On Monday I emailed the UK's leading expert on exercise for cancer patients to arrange to meet for a chat (she's offered to comment on my current exercise programme and I want to pick her brains on the mechanisms by which exercise helps to combat cancer). She wrote back that she wouldn't be available before Wednesday because on Tuesday she was running with the Olympic Torch and then going to be interviewed at Scone Palace for a radio broadcast. I thought that was a pretty lame excuse but I let it go ;-)

    On Tuesday evening I won a singles match in a knockout tournament being played on the Carnoustie Championship Course. There are 5 clubs at Carnoustie, based around the 3 courses there and I'm a member of a couple of them. I was on my way in to the Carnoustie G.C. to put my name through in the competition when I saw a large celebratory crowd outside with wine-glasses in their hands. I figured it might be connected with the Club Championship but it all seemed a bit extravagant for that. Then a piper struck up a fine bit of music and people began to disappear inside. I noticed a car in the road right at the entrance path to the Clubhouse and saw a chap get in to move it. So, I approached his car and asked what the event was. He proudly announced "My Father has just carried the Olympic Torch into the Club!"

    So, I went on in, past the lad who was holding the torch and decided to take a snap with my iPhone camera. Amusingly, after a 4-ball there the following morning, 2 of my playing partners enthusiastically showed me pics and videos they'd taken the previous day. Each of them had driven into our County Town (Forfar) to see the Torch progress and take photos, unaware that the Torch was to come down through the County to Carnoustie. So, I was able to produce my 'phone and say "Nice pictures, and here it is in the Club last night!"

    I hope your recovery continues well and that your Family is suitably proud of the way you gritted your teeth and bounced back. Clearly you're still sharp enough to have been the first to identify the Torch!

    Boy, Wedgie sure is young!
    ...enough said.
  • NanaLou
    NanaLou Member Posts: 71
    #26
    Texas_wedge said:

    catch up
    Thanks for the further update. I hope your unusual record will serve as a cautionary tale for others with very small but highly aggressive tumours. I'm delighted to hear how you're winning and I look forward to hearing of another clear scan in October - I'm sure your inference is correct and that it's well-justified on his part.

    That's two good stories. i hope we get equally good news from Nancy and Rae.

    update
    I am still here a fighting. I am still on the Sutent. I went to the Dr Friday for blood work. Everything is looking good. I will have a scan done at the end of July. My last scan was in April, where I showed about a 50% shrink in the tumors. My oncologist still would like to try the inteluakin at some point. He says it is the only cure. I asked him about MDX-1106. He said I was on the list. But they were taking no new cases in the trial right now. Right now it was for people with mets to manger organs. Mine is in the lymph nodes where my Kidney use to be. So for now we stay on the Sutent unitl we reach a platue. Then we hit it with the interleukin.( And pray it works).

    Nephrectomy November 18,2011
    11 Cm , 95% sarcomatoid, T2b, staging III (The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has conventional clear cell features.)
    reoccurence January 21,2012 several lymph nodes
    shurnk 50% April 6,2012

    I am still working although some days are better than others. I am doing the best I can to stay positive. I laugh as much as I can and joke about all of this when possible.
  • rae_rae
    rae_rae Member Posts: 300 Member
    #27
    NanaLou said:

    update
    I am still here a fighting. I am still on the Sutent. I went to the Dr Friday for blood work. Everything is looking good. I will have a scan done at the end of July. My last scan was in April, where I showed about a 50% shrink in the tumors. My oncologist still would like to try the inteluakin at some point. He says it is the only cure. I asked him about MDX-1106. He said I was on the list. But they were taking no new cases in the trial right now. Right now it was for people with mets to manger organs. Mine is in the lymph nodes where my Kidney use to be. So for now we stay on the Sutent unitl we reach a platue. Then we hit it with the interleukin.( And pray it works).

    Nephrectomy November 18,2011
    11 Cm , 95% sarcomatoid, T2b, staging III (The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has conventional clear cell features.)
    reoccurence January 21,2012 several lymph nodes
    shurnk 50% April 6,2012

    I am still working although some days are better than others. I am doing the best I can to stay positive. I laugh as much as I can and joke about all of this when possible.

    Humor
    They say laughter is the best medicine! Glad to hear you are doing well and keeping a positive attitude! Here's to more humor and less tumor!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #28
    rae_rae said:

    Humor
    They say laughter is the best medicine! Glad to hear you are doing well and keeping a positive attitude! Here's to more humor and less tumor!

    Sarcomatoid Club
    Thanks for answering the roll call, ladies, and it's so good to hear from you. I'm sorry you still get pain along the incision line, Rae and that you have bad days, Nancy but we're all still here and making the most of our lives.

    In our sarcomatoid versions of RCC the picture still seems unclear so I suppose I shouldn't be surprised at seeming disparities in classification. We have some highly anomalous cases in our little group. Dean had a 1.8 cm tumour which was, naturally, only stage 1 but already 50% sarcomatoid and hence classed as grade 4. On the other hand we have John with a 17.5 cm tumour (i.e. almost 1,000 times the volume of Dean's !!) but only stage 2b, although also grade 4 because of the sarcomatoid features.

    Nancy had an 11 cm. tumour and, like John, was classified as 2b but 90% sarcomatoid, with rhabdoid features but only labelled grade 3!!! Rae had sarcomatoid features but, like Nancy, was classified as only grade 3.

    I got labelled stage 4 with a 9 cm tumour because it had burst through Gerota's Fascia, which I presume everyone else here, fortunately, escaped (hence your lower stages) I'm also grade 4, so it seems we're all grade 3 or 4, due to the sarcomatoid factor. [I'm another anomaly since everyone else here is clear cell and I'm chromophobe. Chromophobe is automatically graded Fuhrman 4 but this is spurious since Fuhrman grading doesn't apply to the rarer sub-types of papillary and chromophobe. I'm awaiting finding out my grading under the new 'chromophobe tumor grading system'.]

    Sarcomatoid is bad news which is why we're all grade 3 or 4 but, luckily, stage is generally much more important than grade in respect of survival which may be why we seem to be doing pretty well, since, apart from me, we're not stage 4.

    We're all being treated differently and this reflects the remark made by Dean (in the "Fuhrman grade ... " thread):

    "I believe each of us has a unique manifestation and response to this disease....one disease broken like light coming through the trees"

    and it will be interesting to follow the outcomes of the different forms of treatment. I'm glad to hear that Nancy is doing so well on Sutent and will later be ready for a shot at IL2. But I'm disappointed that she can't get MDX-1106 so far, because it sounds as though it's having a roaring success in early appraisals and might benefit others in our group. Maybe this will soon change.

    Meanwhile, all the best to everyone and let's keep this specialised thread going for the education of all of us as we continue to compare notes.
  • garym
    garym Member Posts: 1,647
    #29
    Texas_wedge said:

    Got it in one Mike
    That was the Olympic Torch arriving at the Carnoustie Golf Club. You've also saved me from the otherwise inevitable quips from Gary and Fox - 'Do you really look that young?' or, more probably, 'Is the torch-bearer your great grandson?'

    On Monday I emailed the UK's leading expert on exercise for cancer patients to arrange to meet for a chat (she's offered to comment on my current exercise programme and I want to pick her brains on the mechanisms by which exercise helps to combat cancer). She wrote back that she wouldn't be available before Wednesday because on Tuesday she was running with the Olympic Torch and then going to be interviewed at Scone Palace for a radio broadcast. I thought that was a pretty lame excuse but I let it go ;-)

    On Tuesday evening I won a singles match in a knockout tournament being played on the Carnoustie Championship Course. There are 5 clubs at Carnoustie, based around the 3 courses there and I'm a member of a couple of them. I was on my way in to the Carnoustie G.C. to put my name through in the competition when I saw a large celebratory crowd outside with wine-glasses in their hands. I figured it might be connected with the Club Championship but it all seemed a bit extravagant for that. Then a piper struck up a fine bit of music and people began to disappear inside. I noticed a car in the road right at the entrance path to the Clubhouse and saw a chap get in to move it. So, I approached his car and asked what the event was. He proudly announced "My Father has just carried the Olympic Torch into the Club!"

    So, I went on in, past the lad who was holding the torch and decided to take a snap with my iPhone camera. Amusingly, after a 4-ball there the following morning, 2 of my playing partners enthusiastically showed me pics and videos they'd taken the previous day. Each of them had driven into our County Town (Forfar) to see the Torch progress and take photos, unaware that the Torch was to come down through the County to Carnoustie. So, I was able to produce my 'phone and say "Nice pictures, and here it is in the Club last night!"

    I hope your recovery continues well and that your Family is suitably proud of the way you gritted your teeth and bounced back. Clearly you're still sharp enough to have been the first to identify the Torch!

    Great, great grandson maybe...
    Actually I thought the guy in the background was the real you...LOL
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #30
    garym said:

    Great, great grandson maybe...
    Actually I thought the guy in the background was the real you...LOL

    Great, great grandson
    Improbable with the procreation patterns in my family history - my grandfather was born in 1841 and on the family pattern any great, great grandson of mine won't be born until 2094 so won't attain the age in the photo before the 22nd century.

    Re the guy in the background, I thought I'd headed that one off by stating that I took the photo myself!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #31
    garym said:

    Great, great grandson maybe...
    Actually I thought the guy in the background was the real you...LOL

    Great, great grandson
    See what you've done - got me stuttering :)
  • ClaraW
    ClaraW Member Posts: 64
    #32
    Texas_wedge said:

    Sarcomatoid Club
    Thanks for answering the roll call, ladies, and it's so good to hear from you. I'm sorry you still get pain along the incision line, Rae and that you have bad days, Nancy but we're all still here and making the most of our lives.

    In our sarcomatoid versions of RCC the picture still seems unclear so I suppose I shouldn't be surprised at seeming disparities in classification. We have some highly anomalous cases in our little group. Dean had a 1.8 cm tumour which was, naturally, only stage 1 but already 50% sarcomatoid and hence classed as grade 4. On the other hand we have John with a 17.5 cm tumour (i.e. almost 1,000 times the volume of Dean's !!) but only stage 2b, although also grade 4 because of the sarcomatoid features.

    Nancy had an 11 cm. tumour and, like John, was classified as 2b but 90% sarcomatoid, with rhabdoid features but only labelled grade 3!!! Rae had sarcomatoid features but, like Nancy, was classified as only grade 3.

    I got labelled stage 4 with a 9 cm tumour because it had burst through Gerota's Fascia, which I presume everyone else here, fortunately, escaped (hence your lower stages) I'm also grade 4, so it seems we're all grade 3 or 4, due to the sarcomatoid factor. [I'm another anomaly since everyone else here is clear cell and I'm chromophobe. Chromophobe is automatically graded Fuhrman 4 but this is spurious since Fuhrman grading doesn't apply to the rarer sub-types of papillary and chromophobe. I'm awaiting finding out my grading under the new 'chromophobe tumor grading system'.]

    Sarcomatoid is bad news which is why we're all grade 3 or 4 but, luckily, stage is generally much more important than grade in respect of survival which may be why we seem to be doing pretty well, since, apart from me, we're not stage 4.

    We're all being treated differently and this reflects the remark made by Dean (in the "Fuhrman grade ... " thread):

    "I believe each of us has a unique manifestation and response to this disease....one disease broken like light coming through the trees"

    and it will be interesting to follow the outcomes of the different forms of treatment. I'm glad to hear that Nancy is doing so well on Sutent and will later be ready for a shot at IL2. But I'm disappointed that she can't get MDX-1106 so far, because it sounds as though it's having a roaring success in early appraisals and might benefit others in our group. Maybe this will soon change.

    Meanwhile, all the best to everyone and let's keep this specialised thread going for the education of all of us as we continue to compare notes.

    Sarcomatoid and Rhabdoid Renal Cell Carcinoma Pathology
    Dear All,

    I am very thankful that I found this site and in particular this thread!!

    My SIL was diagnosed with sarcomatoid RCC in Jan this year following 2 weeks of haematuria and mild right flank pain. When I took her to ER, the doctors thought she had a renal calculus however a non-contrast CT kidney/ureter/bladder showed a mass in her right kidney.

    She had a nephrectomy within 5 weeks and histopathology reviewed sarcomatoid RCC with evidence of necrosis.

    My SIL and I are inseparable, and we only live a block away from eachother. However since her diagnosis she has become quite withdrawn. She is not very proactive in her treatment and she won't even let me accompany her to her oncologist's appointment anymore. She tells me that she wants to give up.

    I am extremely worried about her. I am trying to do some research regarding treatment options for sarcomatoid rcc.

    Many thanks for any advice/guidance.

    Kindest Regards,
    Clara W
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #33
    ClaraW said:

    Sarcomatoid and Rhabdoid Renal Cell Carcinoma Pathology
    Dear All,

    I am very thankful that I found this site and in particular this thread!!

    My SIL was diagnosed with sarcomatoid RCC in Jan this year following 2 weeks of haematuria and mild right flank pain. When I took her to ER, the doctors thought she had a renal calculus however a non-contrast CT kidney/ureter/bladder showed a mass in her right kidney.

    She had a nephrectomy within 5 weeks and histopathology reviewed sarcomatoid RCC with evidence of necrosis.

    My SIL and I are inseparable, and we only live a block away from eachother. However since her diagnosis she has become quite withdrawn. She is not very proactive in her treatment and she won't even let me accompany her to her oncologist's appointment anymore. She tells me that she wants to give up.

    I am extremely worried about her. I am trying to do some research regarding treatment options for sarcomatoid rcc.

    Many thanks for any advice/guidance.

    Kindest Regards,
    Clara W

    Not giving in
    Clara, what's behind your sister-in-law's change in behaviour? Maybe she's read up on this variant of rcc and has got the bad news? Perhaps she has an insensitive and brutally honest medical adviser?
    Can you tell us a bit more - e.g. her age, BMI, general health, lifestyle (smoker? Diet, physical activity level, occupation, exposure to toxic chemicals in the environment, or at home) and anything else that could be relevant, ESP. Tumour size, stage, grade, underlying cell type(s) before the change to sarcomatoid and the percentage of the sarcomatoid component.

    If you can answer some of these, we'll be better placed to rally round and help her to, in the words of one of our most highly-regarded contributors here (by me, at any rate) "regroup" and go after the disease and see it off. Do tell her that's possible and people are doing so all the time. Being in touch here is already a big step forward in improving the odds for a good outcome.
  • ClaraW
    ClaraW Member Posts: 64
    #34
    Texas_wedge said:

    Not giving in
    Clara, what's behind your sister-in-law's change in behaviour? Maybe she's read up on this variant of rcc and has got the bad news? Perhaps she has an insensitive and brutally honest medical adviser?
    Can you tell us a bit more - e.g. her age, BMI, general health, lifestyle (smoker? Diet, physical activity level, occupation, exposure to toxic chemicals in the environment, or at home) and anything else that could be relevant, ESP. Tumour size, stage, grade, underlying cell type(s) before the change to sarcomatoid and the percentage of the sarcomatoid component.

    If you can answer some of these, we'll be better placed to rally round and help her to, in the words of one of our most highly-regarded contributors here (by me, at any rate) "regroup" and go after the disease and see it off. Do tell her that's possible and people are doing so all the time. Being in touch here is already a big step forward in improving the odds for a good outcome.

    Thank you

    Some background history on my SIL:

    Age 47, BMI (around 20 I think), fit, never smoked,social drinker, diet high in meat, worked as an accountant until last year.

    In terms of her family history, the only relevant one I can think of is that her first degree cousin was born with polycystic kidneys.

    Now, the tumour....

    I saw the oncologist with her on her follow-up appointment after her surgery. My understanding is that her tumour was 6cm, mostly sarcomatoid but I don't recall the cell type prior to further de-differentiation.I have tried to ask my SIL but she did not want to talk about it. I remember her doctor said that the younger a person is, the more aggressive the tumour. I do know that her tumour is grade 4, stage 4 without evidence of distant metastasis.

    I'm hoping that someone would shed light on adjuvant treatment after surgery. From my limited readings, I understand that currently there is no standard adjuvant chemotherapy for patients with non-metastatic Sarcomatoid RCC. However, only yesterday I heard about a clinical trial that is up and running in Australia (we live in Australia)in treating patients with non-metastatic rcc with sarcomatoid transformation. I haven't found much information yet but I will persevere. All I know is that the chemotherapeutic agent is another tyrosine kinase inhibitor. I will need to look up more re: which TK inhibitor it is and what the preliminary results are.

    If anyone knows anything about such trials please shed some light. I feel there is some hope for my dear sister in law to do something about this disease before it spreads. I will post again when I have gathered more useful information.

    Once again, thank you for your reply. Yes, lets try to improve the odds!

    Kindest Regards,
    C
  • DMike
    DMike Member Posts: 259
    #35
    ClaraW said:

    Thank you

    Some background history on my SIL:

    Age 47, BMI (around 20 I think), fit, never smoked,social drinker, diet high in meat, worked as an accountant until last year.

    In terms of her family history, the only relevant one I can think of is that her first degree cousin was born with polycystic kidneys.

    Now, the tumour....

    I saw the oncologist with her on her follow-up appointment after her surgery. My understanding is that her tumour was 6cm, mostly sarcomatoid but I don't recall the cell type prior to further de-differentiation.I have tried to ask my SIL but she did not want to talk about it. I remember her doctor said that the younger a person is, the more aggressive the tumour. I do know that her tumour is grade 4, stage 4 without evidence of distant metastasis.

    I'm hoping that someone would shed light on adjuvant treatment after surgery. From my limited readings, I understand that currently there is no standard adjuvant chemotherapy for patients with non-metastatic Sarcomatoid RCC. However, only yesterday I heard about a clinical trial that is up and running in Australia (we live in Australia)in treating patients with non-metastatic rcc with sarcomatoid transformation. I haven't found much information yet but I will persevere. All I know is that the chemotherapeutic agent is another tyrosine kinase inhibitor. I will need to look up more re: which TK inhibitor it is and what the preliminary results are.

    If anyone knows anything about such trials please shed some light. I feel there is some hope for my dear sister in law to do something about this disease before it spreads. I will post again when I have gathered more useful information.

    Once again, thank you for your reply. Yes, lets try to improve the odds!

    Kindest Regards,
    C

    Sarcomatoid
    Clara,
    I had a partial nephrectomy in December of 2011. My path report showed a 5cm tumor, stage T1b with a Fuhrman grade 4 due to 5% sarcomatoid features.

    I just had my 6 month CT scans and there was no evidence of disease at this time. I will have to remain vigilant on my checkups and scans because of the aggressive nature of sarcomatoid tumors. My doctor reminded me again last week how lucky I was to have caught this sarcomatoid tumor early.

    Your post shows how much you care for your sister-in-law. I hope you'll continue to urge her to keep close tabs on her RCC. I, as a survivor, appreciate family members and friends who genuinely care and show interest. They're the ones who realize that just because the surgery is over, we're not healed. There is so much more to this after surgery. Your sister-in-law is very lucky to have you!

    Take care, David

    PS - Good luck to your Cadel Evans and the other Aussies in this year's Tour de France!
  • alice124
    alice124 Member Posts: 896 Member
    #36
    DMike said:

    Sarcomatoid
    Clara,
    I had a partial nephrectomy in December of 2011. My path report showed a 5cm tumor, stage T1b with a Fuhrman grade 4 due to 5% sarcomatoid features.

    I just had my 6 month CT scans and there was no evidence of disease at this time. I will have to remain vigilant on my checkups and scans because of the aggressive nature of sarcomatoid tumors. My doctor reminded me again last week how lucky I was to have caught this sarcomatoid tumor early.

    Your post shows how much you care for your sister-in-law. I hope you'll continue to urge her to keep close tabs on her RCC. I, as a survivor, appreciate family members and friends who genuinely care and show interest. They're the ones who realize that just because the surgery is over, we're not healed. There is so much more to this after surgery. Your sister-in-law is very lucky to have you!

    Take care, David

    PS - Good luck to your Cadel Evans and the other Aussies in this year's Tour de France!

    Mike
    Great post David!!! Congratulations on the NED.

    And great dialogue for Clare and her sister-in-law. Clare, I admire your trying to help a reluctant sister-in-law. You don't sound like one to give up; don't let her do so either. Good luck.
  • alice124
    alice124 Member Posts: 896 Member
    #37
    alice124 said:

    Mike
    Great post David!!! Congratulations on the NED.

    And great dialogue for Clare and her sister-in-law. Clare, I admire your trying to help a reluctant sister-in-law. You don't sound like one to give up; don't let her do so either. Good luck.

    Mike/David
    Think this is my second (or third) congrats on NED; but the other post(s) was addressed to Mike. Sorry
  • DMike
    DMike Member Posts: 259
    #38
    alice124 said:

    Mike/David
    Think this is my second (or third) congrats on NED; but the other post(s) was addressed to Mike. Sorry

    Thanks
    Alice,
    I can't receive too many congrats on NED!
    --David (I'm David Michael, thus the DMike, a nickname)
  • wfdesq
    wfdesq Member Posts: 1
    #39
    Good to find this subgroup
    I was diagnosed with RCC in April 2010, unclassified with 40% sarcomatoid. Mets to lung and lumph system found in June 2011. Rollercoaster ride for the last year. A lung met now stands at 6 cm x 6.5 cm and a lymph node is now 2.3 cm, and a 5+mm suspicious area in right front cortex of brain. Sutent from June 2011 to May, 2012, tried inlyta for 20 days in June but got severe headaches and leg cramping. Now on Nexavar for past 8 days.

    I am interested to hear that some with sarcomatoid have tried HDIL-2. I was disqualified because of the sarcomatoid. Anyone else have info on who may treat sarcomatoid with HD IL-2?

    Went to KCA National Conference in Houston in April - Dr. Nazir Tannir basically said that no current FDA approved drug has shown as being effective with Sarcomatoid. My oncologist says that is plain wrong. Who does one believe, a nationally known expert in non clear cell from MDAnderson or a wonderful caring oncologist at a highly respected university with ties to another world class facility?

    Any thought or comments would be appreciated.
  • Jeff2159
    Jeff2159 Member Posts: 108
    #40
    wfdesq said:

    Good to find this subgroup
    I was diagnosed with RCC in April 2010, unclassified with 40% sarcomatoid. Mets to lung and lumph system found in June 2011. Rollercoaster ride for the last year. A lung met now stands at 6 cm x 6.5 cm and a lymph node is now 2.3 cm, and a 5+mm suspicious area in right front cortex of brain. Sutent from June 2011 to May, 2012, tried inlyta for 20 days in June but got severe headaches and leg cramping. Now on Nexavar for past 8 days.

    I am interested to hear that some with sarcomatoid have tried HDIL-2. I was disqualified because of the sarcomatoid. Anyone else have info on who may treat sarcomatoid with HD IL-2?

    Went to KCA National Conference in Houston in April - Dr. Nazir Tannir basically said that no current FDA approved drug has shown as being effective with Sarcomatoid. My oncologist says that is plain wrong. Who does one believe, a nationally known expert in non clear cell from MDAnderson or a wonderful caring oncologist at a highly respected university with ties to another world class facility?

    Any thought or comments would be appreciated.

    IL-2 and Sarcomatoid
    I just asked my Oncologist about IL-2 treatment and he told me it has not shown success with sarcomatoid. He is out of city of hope. That is why I will go back on Sutent monday.Good Luck
    Jeff
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #41
    Jeff2159 said:

    IL-2 and Sarcomatoid
    I just asked my Oncologist about IL-2 treatment and he told me it has not shown success with sarcomatoid. He is out of city of hope. That is why I will go back on Sutent monday.Good Luck
    Jeff

    IL2 for sarcomatoid RCC
    If necessary, and so long as it's possible, I'll stay with the surgical route. The only drug therapy envisaged by my team is sunitinib. Janice Dutcher told me that she would favour the earlier chemo agents in my case. Prof. Hawkins at the Christie in Manchester has said he would be prepared, in principle, to try me on HDIL2 (subject, of course, to appropriate performance and cardio screening etc., given I'd be 70+) on the basis that you never know 'til you try and we don't know anything much about response to IL2 in a metastatic, necrotic, sarcomatoid chromophobe case (not exactly thick on the ground).

    It's not really an issue of who you believe. It's rather a case of how each doctor appraises the very small amount of information we have on the subject - it isn't enough so far for anyone to draw safe conclusions from the tiny corpus of data that's been accumulated.

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