Sarcomatoid

NanaLou
NanaLou Member Posts: 71
Had my following up with oncologist yesterday. I do not qualify for any trials,because they were for clear cell cancers only. Mine is Sarcomatoid. He said this is an agressive cancer. We will keep a close eye on it. My first scan will be next month followed by another in 4 months then go to 6 months. There is a 50/50 chance it will never return. Not the numbers I hoped for, he told me to look at it as the glass is half full not half empty. Do any of you have this type? Can you tell me anything about it?

Merry Christmas to you All!!!

Nancy
«134567

Comments

  • djc2
    djc2 Member Posts: 17
    Sarcomatoid
    Hi NanaLou,

    I have what they are calling clear cell renal cell carcinoma with Sacomatoid and Rhabdoid features. Some things I have read suggest this is the same as Sarcomatoid rcc. In any case it is Grade IV and agressive, like yours. My surgery was successful, margins clear and no evidence of metastasis. My three month CT scan showed no clear evidence of metastasis anywhere. I will see an oncologist tomorrow and hope to gain some more perspective. Truth is I don't think there are too many of us out here and I've been having a hard time getting much clear information. Can you tell me how large your tumor was and any details about your pathology report? I will share with you what my oncologist says after tomorrow. There is a movie out called 50-50, based on a real case of someone who got an unusual form of cancer...After many years, he's doing fine. Keep your faith; there are many worse prognoses! All the best wishes to you.
  • NanaLou
    NanaLou Member Posts: 71
    djc2 said:

    Sarcomatoid
    Hi NanaLou,

    I have what they are calling clear cell renal cell carcinoma with Sacomatoid and Rhabdoid features. Some things I have read suggest this is the same as Sarcomatoid rcc. In any case it is Grade IV and agressive, like yours. My surgery was successful, margins clear and no evidence of metastasis. My three month CT scan showed no clear evidence of metastasis anywhere. I will see an oncologist tomorrow and hope to gain some more perspective. Truth is I don't think there are too many of us out here and I've been having a hard time getting much clear information. Can you tell me how large your tumor was and any details about your pathology report? I will share with you what my oncologist says after tomorrow. There is a movie out called 50-50, based on a real case of someone who got an unusual form of cancer...After many years, he's doing fine. Keep your faith; there are many worse prognoses! All the best wishes to you.

    Size of tumor
    I don't know much about my path report. I do know it was 11cm and a grade 3. Other than that I don't know. What I have read on Sarcomatoid does not sound good. So I guess I should stop reading. Just looking for something postive.

    I wish you the best.

    Nancy
  • djc2
    djc2 Member Posts: 17
    NanaLou said:

    Size of tumor
    I don't know much about my path report. I do know it was 11cm and a grade 3. Other than that I don't know. What I have read on Sarcomatoid does not sound good. So I guess I should stop reading. Just looking for something postive.

    I wish you the best.

    Nancy

    Hi Nancy,
    I had my visit

    Hi Nancy,
    I had my visit with the oncologist today. He says my tumor was a clear cell type with 50% sarcomatoid features. Is it possible yours is one of the regular types with sarcomatoid features too? My oncologist is optimistic since the tumor was small, even though much of it was sacomatoid. I would re-read your path report carefully to be sure and if you have any questions ask your oncologist again.
    I found another web site which may have some more information for you, It is rare-cancer.org, but, honestly, you may be right that too much reading doesn't help. We would proably both be better off forgetting about the odds and trying to enjoy our lives! I hope you have a great holday season. My best wishes to you.
  • rae_rae
    rae_rae Member Posts: 300 Member
    djc2 said:

    Hi Nancy,
    I had my visit

    Hi Nancy,
    I had my visit with the oncologist today. He says my tumor was a clear cell type with 50% sarcomatoid features. Is it possible yours is one of the regular types with sarcomatoid features too? My oncologist is optimistic since the tumor was small, even though much of it was sacomatoid. I would re-read your path report carefully to be sure and if you have any questions ask your oncologist again.
    I found another web site which may have some more information for you, It is rare-cancer.org, but, honestly, you may be right that too much reading doesn't help. We would proably both be better off forgetting about the odds and trying to enjoy our lives! I hope you have a great holday season. My best wishes to you.

    Nancy, I was told my tumor
    Nancy,
    I was told my tumor was clear cell with some sarcomatoid features. It was explained to me that it was more aggressive (the original CT scan before surgery they believed it to be grade four, path results grade three). Everything I've read has a differing opinion such as clear cell progressing to sarcomatoid or is sarcomatoid its own type of cancer.

    I agree with the advice of living life without worry. Be vigilant but live freely.
    Merry Christmas
    Rae
  • NanaLou
    NanaLou Member Posts: 71
    rae_rae said:

    Nancy, I was told my tumor
    Nancy,
    I was told my tumor was clear cell with some sarcomatoid features. It was explained to me that it was more aggressive (the original CT scan before surgery they believed it to be grade four, path results grade three). Everything I've read has a differing opinion such as clear cell progressing to sarcomatoid or is sarcomatoid its own type of cancer.

    I agree with the advice of living life without worry. Be vigilant but live freely.
    Merry Christmas
    Rae

    I will have to get my path
    I will have to get my path report. I have read some of the same things Rae Rae. I have had a better day today. It is funny how one day you can be so down and the next you are ready to fight. This is a funny roller coaster I am on. I hope you two have a great Christmas. I am going to try not to worry about this Cancer for a few days at least. I have a four year old who is worried about Santa Claus coming. Which makes it all worth it.

    Merry Christmas,

    Nancy
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    djc2 said:

    Sarcomatoid
    Hi NanaLou,

    I have what they are calling clear cell renal cell carcinoma with Sacomatoid and Rhabdoid features. Some things I have read suggest this is the same as Sarcomatoid rcc. In any case it is Grade IV and agressive, like yours. My surgery was successful, margins clear and no evidence of metastasis. My three month CT scan showed no clear evidence of metastasis anywhere. I will see an oncologist tomorrow and hope to gain some more perspective. Truth is I don't think there are too many of us out here and I've been having a hard time getting much clear information. Can you tell me how large your tumor was and any details about your pathology report? I will share with you what my oncologist says after tomorrow. There is a movie out called 50-50, based on a real case of someone who got an unusual form of cancer...After many years, he's doing fine. Keep your faith; there are many worse prognoses! All the best wishes to you.

    Sarcomatoid
    I hope everyone had a pleasant festive season. This is a rare manifestation of cancer but there are many victims and much research both done and continuing. Agreed that you can get despondent reading about it. However, we can speed up our learning by pooling our resources here. It may be a little too soon for members here to have squeezed out all of the advice they will be getting from their medical advisers but maybe, in due course, it will be possible to gather here the various evaluations, recommendations for treatment and the arguments and evidence supporting the advice we are offered?

    Rae was right in saying that the jury still seems to be out on the exact nature of sarcomatous cancer cells. The best paper I've found on the topic explains that whereas cells normally develop into specialised entities with a dedicated function, sarcomatoid cells appear to be ones that have been specialised but have regressed to a more primitive, embryonic form and so are no longer classifiable. All of this may be academic but it becomes important if it suggests good lines to follow in looking for better treatments.

    Foxy has provided the perfect template for handling our situation - informed, realistic but positive and always able to maintain a sense of humour. I intend to follow his example and go on the attack at once. I've already ordered the Maars program which John has mentioned in these threads and on KIDNEY-ONC as being of great value to him. I was further encouraged to go for this after reading a paper published last year in "Psychiatry Research: Neuroimaging" which found significant changes in the brain resulting from "Mindfulness meditation".

    I'm issuing requests for help in focusing on promising treatment options and any possible relevant clinical trials. Unappetising though the prognosis is, there are quite a few grounds for being positive. (I've always seen the half-empty glass as at least three-quarters full, doubtless helped by my being Upside Down). The very fact that we're here is an immediate plus, both because of the shared support and because the mere fact of returning here speaks to our commitment to act for our own benefit and that of others.

    I dare say you've all read some bits by the late, great Steve Dunn at:

    http://cancerguide.org/rcc_subtypes.html

    A very worthwhile and inspiring piece he recommended, for good reason, is The Median Isn't the Message by Stephen Jay Gould which he reproduced at

    http://cancerguide.org/median_not_msg.html

    and which should be essential reading for all of us! It's beautifully written and very scholarly and may be rather hard going for some of us. The key point is that he was diagnosed with a rare cancer which was considered incurable and had a median life expectancy of 8 months from diagnosis but understood enough about statistics not to be flattened by that information. H emphasises a positive attitude and sense of humour. He lived another 20 years (not months!) and died of a different disease.
  • garym
    garym Member Posts: 1,647

    Sarcomatoid
    I hope everyone had a pleasant festive season. This is a rare manifestation of cancer but there are many victims and much research both done and continuing. Agreed that you can get despondent reading about it. However, we can speed up our learning by pooling our resources here. It may be a little too soon for members here to have squeezed out all of the advice they will be getting from their medical advisers but maybe, in due course, it will be possible to gather here the various evaluations, recommendations for treatment and the arguments and evidence supporting the advice we are offered?

    Rae was right in saying that the jury still seems to be out on the exact nature of sarcomatous cancer cells. The best paper I've found on the topic explains that whereas cells normally develop into specialised entities with a dedicated function, sarcomatoid cells appear to be ones that have been specialised but have regressed to a more primitive, embryonic form and so are no longer classifiable. All of this may be academic but it becomes important if it suggests good lines to follow in looking for better treatments.

    Foxy has provided the perfect template for handling our situation - informed, realistic but positive and always able to maintain a sense of humour. I intend to follow his example and go on the attack at once. I've already ordered the Maars program which John has mentioned in these threads and on KIDNEY-ONC as being of great value to him. I was further encouraged to go for this after reading a paper published last year in "Psychiatry Research: Neuroimaging" which found significant changes in the brain resulting from "Mindfulness meditation".

    I'm issuing requests for help in focusing on promising treatment options and any possible relevant clinical trials. Unappetising though the prognosis is, there are quite a few grounds for being positive. (I've always seen the half-empty glass as at least three-quarters full, doubtless helped by my being Upside Down). The very fact that we're here is an immediate plus, both because of the shared support and because the mere fact of returning here speaks to our commitment to act for our own benefit and that of others.

    I dare say you've all read some bits by the late, great Steve Dunn at:

    http://cancerguide.org/rcc_subtypes.html

    A very worthwhile and inspiring piece he recommended, for good reason, is The Median Isn't the Message by Stephen Jay Gould which he reproduced at

    http://cancerguide.org/median_not_msg.html

    and which should be essential reading for all of us! It's beautifully written and very scholarly and may be rather hard going for some of us. The key point is that he was diagnosed with a rare cancer which was considered incurable and had a median life expectancy of 8 months from diagnosis but understood enough about statistics not to be flattened by that information. H emphasises a positive attitude and sense of humour. He lived another 20 years (not months!) and died of a different disease.

    Stephen Jay Gould...
    T,

    I just read The Median Isn't The Message and loved it, thanks for the recommendation. I have also looked into the Maars program a bit, thanks to Jon, and I am considering ordering it even though my fight with cancer is currently at a truce, I'll be very interested in your intellectual opinion of it. It may also have a beneficial effect on your golf game, a nassau or two and you'll have your purchase price back.

    I'm so glad that you have picked up your sword and shield and are preparing to do battle, I was sure you would bounce back more fierce than ever, a true Fighting Scot, much like Mr. Gould. With your attitude and sense of humor I expect you'll still be "knockin' it about" in twenty years too.

    Keep smiling,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Stephen Jay Gould...
    T,

    I just read The Median Isn't The Message and loved it, thanks for the recommendation. I have also looked into the Maars program a bit, thanks to Jon, and I am considering ordering it even though my fight with cancer is currently at a truce, I'll be very interested in your intellectual opinion of it. It may also have a beneficial effect on your golf game, a nassau or two and you'll have your purchase price back.

    I'm so glad that you have picked up your sword and shield and are preparing to do battle, I was sure you would bounce back more fierce than ever, a true Fighting Scot, much like Mr. Gould. With your attitude and sense of humor I expect you'll still be "knockin' it about" in twenty years too.

    Keep smiling,

    Gary

    The Median Isn't the Message
    Glad you enjoyed it Gary. Funnily enough I was wanting your opinion of an article on which I'm in correspondence with the author who was/is (I must ask him) in the U. of Michigan Med. School. I thought it was exactly what I was looking for when I found it but I'd appreciate benefit of your engineer's brain being brought to bear on it. It's entitled "The Mathematical Relationship between Heart Rate, Cardiac Output and Pulse Pressure in the Human Systemic Vasculature." Let me know if you don't get it here:

    http://www.scribd.com/doc/35795122/The-Mathematical-Relationship-Between-Heart-Rate-Cardiac-Output-and-Pulse-Pressure-in-the-Human-Systemic-Vasculature

    I'm hoping my sword and shield are up to the job. I don't feel it's yet time for me to shuffle off this mortal coil. I won't get the full picture until a week or so into Feb. when the chips will be down and I anticipate my urologist will refer me to an appropriate oncologist. Fortunately the hospital is world renowned for cancer care but that doesn't mean they are expert in this particular problematic area.
  • garym
    garym Member Posts: 1,647

    The Median Isn't the Message
    Glad you enjoyed it Gary. Funnily enough I was wanting your opinion of an article on which I'm in correspondence with the author who was/is (I must ask him) in the U. of Michigan Med. School. I thought it was exactly what I was looking for when I found it but I'd appreciate benefit of your engineer's brain being brought to bear on it. It's entitled "The Mathematical Relationship between Heart Rate, Cardiac Output and Pulse Pressure in the Human Systemic Vasculature." Let me know if you don't get it here:

    http://www.scribd.com/doc/35795122/The-Mathematical-Relationship-Between-Heart-Rate-Cardiac-Output-and-Pulse-Pressure-in-the-Human-Systemic-Vasculature

    I'm hoping my sword and shield are up to the job. I don't feel it's yet time for me to shuffle off this mortal coil. I won't get the full picture until a week or so into Feb. when the chips will be down and I anticipate my urologist will refer me to an appropriate oncologist. Fortunately the hospital is world renowned for cancer care but that doesn't mean they are expert in this particular problematic area.

    I'll check it out...
    I'll check it out, your capacity for research is astounding!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    I'll check it out...
    I'll check it out, your capacity for research is astounding!

    Brief note on sarcomatoid cells
    http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-sarcomatoid-renal-cancer

    Contains a very brief outline, maybe useful for someone who hasn't delved into this enough to know it all already.
  • NanaLou
    NanaLou Member Posts: 71

    Sarcomatoid
    I hope everyone had a pleasant festive season. This is a rare manifestation of cancer but there are many victims and much research both done and continuing. Agreed that you can get despondent reading about it. However, we can speed up our learning by pooling our resources here. It may be a little too soon for members here to have squeezed out all of the advice they will be getting from their medical advisers but maybe, in due course, it will be possible to gather here the various evaluations, recommendations for treatment and the arguments and evidence supporting the advice we are offered?

    Rae was right in saying that the jury still seems to be out on the exact nature of sarcomatous cancer cells. The best paper I've found on the topic explains that whereas cells normally develop into specialised entities with a dedicated function, sarcomatoid cells appear to be ones that have been specialised but have regressed to a more primitive, embryonic form and so are no longer classifiable. All of this may be academic but it becomes important if it suggests good lines to follow in looking for better treatments.

    Foxy has provided the perfect template for handling our situation - informed, realistic but positive and always able to maintain a sense of humour. I intend to follow his example and go on the attack at once. I've already ordered the Maars program which John has mentioned in these threads and on KIDNEY-ONC as being of great value to him. I was further encouraged to go for this after reading a paper published last year in "Psychiatry Research: Neuroimaging" which found significant changes in the brain resulting from "Mindfulness meditation".

    I'm issuing requests for help in focusing on promising treatment options and any possible relevant clinical trials. Unappetising though the prognosis is, there are quite a few grounds for being positive. (I've always seen the half-empty glass as at least three-quarters full, doubtless helped by my being Upside Down). The very fact that we're here is an immediate plus, both because of the shared support and because the mere fact of returning here speaks to our commitment to act for our own benefit and that of others.

    I dare say you've all read some bits by the late, great Steve Dunn at:

    http://cancerguide.org/rcc_subtypes.html

    A very worthwhile and inspiring piece he recommended, for good reason, is The Median Isn't the Message by Stephen Jay Gould which he reproduced at

    http://cancerguide.org/median_not_msg.html

    and which should be essential reading for all of us! It's beautifully written and very scholarly and may be rather hard going for some of us. The key point is that he was diagnosed with a rare cancer which was considered incurable and had a median life expectancy of 8 months from diagnosis but understood enough about statistics not to be flattened by that information. H emphasises a positive attitude and sense of humour. He lived another 20 years (not months!) and died of a different disease.

    Thank you
    I read the Stephen Jay Gould message. It was just what I needed. My 1st folllow up scan is tomorrow. I am doing pretty good. But I have started to get what I call the (Cancer Crazies). I think we all have them. It is where you think every little pain (you have had your whole life)is the spread of cancer. Yesterday I miss dialed a number twice in a row. And, the silly thought it had spread to my brain popped up.LOL I have only misdialed phone numbers a million times in my life. I do try to stay positive as much as possible. Sometimes it is hard. I do believe that attitude is everything! I did have a herbal tea suggested to me. I have not gotten any yet, but you might want to check it out. I believe it is spelled Essiac.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NanaLou said:

    Thank you
    I read the Stephen Jay Gould message. It was just what I needed. My 1st folllow up scan is tomorrow. I am doing pretty good. But I have started to get what I call the (Cancer Crazies). I think we all have them. It is where you think every little pain (you have had your whole life)is the spread of cancer. Yesterday I miss dialed a number twice in a row. And, the silly thought it had spread to my brain popped up.LOL I have only misdialed phone numbers a million times in my life. I do try to stay positive as much as possible. Sometimes it is hard. I do believe that attitude is everything! I did have a herbal tea suggested to me. I have not gotten any yet, but you might want to check it out. I believe it is spelled Essiac.

    The Median Isn't The Message
    NanaLou, I'm so glad that you enjoyed that inspirational piece by Stephen Jay Gould and that the timing was so handy for you. We all know what you mean about anxiety that is probably unjustified (although staying vigilant is wise, nonetheless). I've suddenly got a tender spot over my ribs and can't think when I've knocked myself or leant badly on something, so I'll watch that space.

    I intend to re-stock on green tea this afternoon and will maybe investigate the Essiac as well, starting with http://www.whale.to/a/mccain1.html.

    I do hope you get good news from your first follow-up scan tomorrow and can breathe a deep sigh of relief. Keep up the positive attitude anyway - we've seen how much it's helped so many people to tip the odds strongly in their favour.
  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Thank you
    I read the Stephen Jay Gould message. It was just what I needed. My 1st folllow up scan is tomorrow. I am doing pretty good. But I have started to get what I call the (Cancer Crazies). I think we all have them. It is where you think every little pain (you have had your whole life)is the spread of cancer. Yesterday I miss dialed a number twice in a row. And, the silly thought it had spread to my brain popped up.LOL I have only misdialed phone numbers a million times in my life. I do try to stay positive as much as possible. Sometimes it is hard. I do believe that attitude is everything! I did have a herbal tea suggested to me. I have not gotten any yet, but you might want to check it out. I believe it is spelled Essiac.

    Tomorrow...
    NanaLou,

    Just wanted to say good luck tomorrow and add that yes we all get the Cancer Crazies prior to follow ups. It does subside a bit over time, but I doubt it will ever go away completely.

    Praying for NED,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Tomorrow...
    NanaLou,

    Just wanted to say good luck tomorrow and add that yes we all get the Cancer Crazies prior to follow ups. It does subside a bit over time, but I doubt it will ever go away completely.

    Praying for NED,

    Gary

    Latest on sarcomatoid RCC
    The current issue of the Oncologist has an 8 page paper, current as of February 14 2012, entitled
    "Sarcomatoid Renal Cell Carcinoma: A Comprehensive Review of the Biology and Current Treatment Strategies" emanating from Bethesda.
    It's not really a fun read and largely confirms a good deal of what we think we already know.

    The Abstract narrates: "Recent advancements in the molecular characterization of renal cell carcinoma altered the classification system and now kidney cancer is divided into several distinct histologic subtypes. Although once a separate histologic category, sarcomatoid renal cell carcinoma is no longer considered a separate tumor type because it can occur with all histologic subtypes. Limited research on tumors with sarcomatoid change has led to minimal progress in the understanding and treatment of these tumors. Because the sarcomatoid variant of renal cell carcinoma can account for approximately one in six cases of advanced kidney cancer, we hope to familiarize clinicians with these tumors by describing the historic background, histologic features, molecular characterization, diagnosis, prognosis, treatment strategies, and active clinical trials of this aggressive type of tumor.TheOncologist2012;17:46–54"

    One reason for uncertainty in treating sarcomatoid RCC is that it is still little understood "anticancer agents now focus on the dysfunctional cellular biology rather than as in the prior era of nonspecific immunotherapy or chemotherapeutic agents. However, one specific RCC entity, sarcomatoid RCC (sRCC), remains to be fully characterized". There seems some indication that chromophobe RCC more frequently turns sarcomatoid then papillary or clear cell. The occurrence of sRCC cells in Fuhrman grades 1 and 2 has apparently fuelled speculation that this pattern may result from activation of a separate sarcomatoid stem cell within the tumour.

    The general thrust seems to be towards immunochemotherapy combinations. Gemcitabine and doxorubicin (Adriamycin) has had some successes, as has sorafenib (Nexavar). Some indications are for further exploration of antiangiogenic therapy for sRCC.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Latest on sarcomatoid RCC
    The current issue of the Oncologist has an 8 page paper, current as of February 14 2012, entitled
    "Sarcomatoid Renal Cell Carcinoma: A Comprehensive Review of the Biology and Current Treatment Strategies" emanating from Bethesda.
    It's not really a fun read and largely confirms a good deal of what we think we already know.

    The Abstract narrates: "Recent advancements in the molecular characterization of renal cell carcinoma altered the classification system and now kidney cancer is divided into several distinct histologic subtypes. Although once a separate histologic category, sarcomatoid renal cell carcinoma is no longer considered a separate tumor type because it can occur with all histologic subtypes. Limited research on tumors with sarcomatoid change has led to minimal progress in the understanding and treatment of these tumors. Because the sarcomatoid variant of renal cell carcinoma can account for approximately one in six cases of advanced kidney cancer, we hope to familiarize clinicians with these tumors by describing the historic background, histologic features, molecular characterization, diagnosis, prognosis, treatment strategies, and active clinical trials of this aggressive type of tumor.TheOncologist2012;17:46–54"

    One reason for uncertainty in treating sarcomatoid RCC is that it is still little understood "anticancer agents now focus on the dysfunctional cellular biology rather than as in the prior era of nonspecific immunotherapy or chemotherapeutic agents. However, one specific RCC entity, sarcomatoid RCC (sRCC), remains to be fully characterized". There seems some indication that chromophobe RCC more frequently turns sarcomatoid then papillary or clear cell. The occurrence of sRCC cells in Fuhrman grades 1 and 2 has apparently fuelled speculation that this pattern may result from activation of a separate sarcomatoid stem cell within the tumour.

    The general thrust seems to be towards immunochemotherapy combinations. Gemcitabine and doxorubicin (Adriamycin) has had some successes, as has sorafenib (Nexavar). Some indications are for further exploration of antiangiogenic therapy for sRCC.

    Latest on sarcomatoid RCC (continued)
    [For general info. to other posters sending long messages, I tried in vain, on and off all day to submit this posting. I was able to make a shorter posting meantime so figured the length was the problem (maybe exacerbated by the software having trouble with the standard abbreviation of sarcomatoid RCC - hence the ****C ).

    (continued):


    As we know, most clinical trials are for clear cell. For sRCC there appear to be current trials of sunitinib (Sutent)with gemcitabine at Dana Farber and Beth Israel; bevacizumab (Avastin) + capecitabine + gemcitabine at MDAnderson; sunitinib (Sutent) with or without gemcitabine at ECOG.

    The bottom line is found in the final sentence of the Conclusion:

    "There may be a role for combination chemotherapy with antiangiogenic therapy in sRCC treatment, but the ultimate improvement will come from better molecular and genetic characterization of sRCC and design of specific therapies."

    This verifies for me the advice given by Jerry White to hang on tenaciously to the best life possible with the positive expectation that better therapies are just around the corner. For me this means plenty of exercise, good diet and social communication, in my case supplemented by the MAARS program and TM. It also helps to look for the funny side wherever possible - milkduds, furballs and the like!! In our situation I feel even non-pc humour is permissible, e.g. my golf-match playing partner yesterday said he's asked for Viagra in a drugstore; the pharmacist said "Do you have a medical certificate?" "No, but I have a picture of my wife."

    Got to keep the spirits up (but down only in moderation).
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Latest on sarcomatoid RCC (continued)
    [For general info. to other posters sending long messages, I tried in vain, on and off all day to submit this posting. I was able to make a shorter posting meantime so figured the length was the problem (maybe exacerbated by the software having trouble with the standard abbreviation of sarcomatoid RCC - hence the ****C ).

    (continued):


    As we know, most clinical trials are for clear cell. For sRCC there appear to be current trials of sunitinib (Sutent)with gemcitabine at Dana Farber and Beth Israel; bevacizumab (Avastin) + capecitabine + gemcitabine at MDAnderson; sunitinib (Sutent) with or without gemcitabine at ECOG.

    The bottom line is found in the final sentence of the Conclusion:

    "There may be a role for combination chemotherapy with antiangiogenic therapy in sRCC treatment, but the ultimate improvement will come from better molecular and genetic characterization of sRCC and design of specific therapies."

    This verifies for me the advice given by Jerry White to hang on tenaciously to the best life possible with the positive expectation that better therapies are just around the corner. For me this means plenty of exercise, good diet and social communication, in my case supplemented by the MAARS program and TM. It also helps to look for the funny side wherever possible - milkduds, furballs and the like!! In our situation I feel even non-pc humour is permissible, e.g. my golf-match playing partner yesterday said he's asked for Viagra in a drugstore; the pharmacist said "Do you have a medical certificate?" "No, but I have a picture of my wife."

    Got to keep the spirits up (but down only in moderation).

    Catch-up
    Nancy, Rae, djc2, how are you doing? Sarcomatous transformation is a game changer and it seems a good idea for us to stay in touch and compare notes.

    From 9cm. radical nephrectomy, stage 4 grade 4 predominantly sarcomatoid and extensively necrotic, I had an immediate 'recurrence' (?) in the renal bed and, consequently, a second op at the end of March. So far, it appears that I've had no distant mets at any time (but banking on that is never wise) whih seems unusually lucky. Constant monitoring but no adjuvant treatment is envisaged for me and the proof of the pudding will be in the eating.

    How have otheres in this boat been faring on their treatment, whatever that happens to be? The more we can learn, the better for us all.
  • djc2
    djc2 Member Posts: 17

    Catch-up
    Nancy, Rae, djc2, how are you doing? Sarcomatous transformation is a game changer and it seems a good idea for us to stay in touch and compare notes.

    From 9cm. radical nephrectomy, stage 4 grade 4 predominantly sarcomatoid and extensively necrotic, I had an immediate 'recurrence' (?) in the renal bed and, consequently, a second op at the end of March. So far, it appears that I've had no distant mets at any time (but banking on that is never wise) whih seems unusually lucky. Constant monitoring but no adjuvant treatment is envisaged for me and the proof of the pudding will be in the eating.

    How have otheres in this boat been faring on their treatment, whatever that happens to be? The more we can learn, the better for us all.

    catch up
    Thanks for keeping us together, Texas_wedge. I am very happy to read of your success removing the "reoccurance" and optimistic that they have now gotten the rest of this disease out of your body. With agressively growing tumors like ours, no matter what stage, grade and other characteristics, it stands to reason additional "reoccurances" would manifest quickly. Each additional day we go after that without evidence of disease therefore is a very positive marker. While this is a tricky disease, I think you have reason to be optimistic.

    I posted my status recently on another thread, but will reiterate here. You may recall, I had an unusual "pygmy shrew" of a tumor (as you called it)---1.8 cm clear cell, 50% sarcomatoid. It was removed in a partial nephrectomy in August of 2011. I recently had my third, three-month scan and was told "to the best of our knowledge you are cancer free." My doctor suggested my next scan be around October (about 5 months, rather than three) which, one can infer, indicates he is gaining confidence. I still have heard of no other rcc so small which has turned significantly sarcomatoid, apparently so quickly...but it is a good reminder about how quirky this disease can be.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    djc2 said:

    catch up
    Thanks for keeping us together, Texas_wedge. I am very happy to read of your success removing the "reoccurance" and optimistic that they have now gotten the rest of this disease out of your body. With agressively growing tumors like ours, no matter what stage, grade and other characteristics, it stands to reason additional "reoccurances" would manifest quickly. Each additional day we go after that without evidence of disease therefore is a very positive marker. While this is a tricky disease, I think you have reason to be optimistic.

    I posted my status recently on another thread, but will reiterate here. You may recall, I had an unusual "pygmy shrew" of a tumor (as you called it)---1.8 cm clear cell, 50% sarcomatoid. It was removed in a partial nephrectomy in August of 2011. I recently had my third, three-month scan and was told "to the best of our knowledge you are cancer free." My doctor suggested my next scan be around October (about 5 months, rather than three) which, one can infer, indicates he is gaining confidence. I still have heard of no other rcc so small which has turned significantly sarcomatoid, apparently so quickly...but it is a good reminder about how quirky this disease can be.

    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.
  • Olsera
    Olsera Member Posts: 38

    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.

    djc2 & TW
    I am glad you have both received clear scans & hope you both continue to receive NED.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Olsera said:

    djc2 & TW
    I am glad you have both received clear scans & hope you both continue to receive NED.

    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.