Sarcomatoid

13567

Comments

  • DMike
    DMike Member Posts: 259

    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.

    Sarcomatoid Article
    Interesting article on sarcomatoid RCC from a radiology perspective. There is even an interactive section to scroll through a CT scan like we've all seen. Maybe, with a few viewings,it will help me understand when my doctor scrolls though my scan.--David

    http://www.radiolopolis.com/index.php/radiology-journal-radiology-case-reports-radiology-review-articles.html?id=976
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    DMike said:

    Sarcomatoid Article
    Interesting article on sarcomatoid RCC from a radiology perspective. There is even an interactive section to scroll through a CT scan like we've all seen. Maybe, with a few viewings,it will help me understand when my doctor scrolls though my scan.--David

    http://www.radiolopolis.com/index.php/radiology-journal-radiology-case-reports-radiology-review-articles.html?id=976

    Sarcomatoid
    Bruce wrote:

    Tue, 08/28/2012 - 12:49pm

    "I had my tumor removed on 8/8/2012. It was 11x12cm in size. I was told it was a rare form of Sarcomatoid type cancer. Not sure of what's next. I see oncologist in 2 weeks."

    Stick around Bruce. Hope your recovery is on course. Sarcomatoid isn't good news (me too) but we can beat the rap and beat the crap out of this cancer. Only some of us get to have sarcomatoid RCC and we need to hang out together.
  • ourfriendjohn
    ourfriendjohn Member Posts: 72

    Sarcomatoid
    Bruce wrote:

    Tue, 08/28/2012 - 12:49pm

    "I had my tumor removed on 8/8/2012. It was 11x12cm in size. I was told it was a rare form of Sarcomatoid type cancer. Not sure of what's next. I see oncologist in 2 weeks."

    Stick around Bruce. Hope your recovery is on course. Sarcomatoid isn't good news (me too) but we can beat the rap and beat the crap out of this cancer. Only some of us get to have sarcomatoid RCC and we need to hang out together.

    The few, the proud
    Amen Tex,

    Those of us with sarcomatoid issues need to hang-out together. I met with an oncologist for the first time yesterday. I put more details under Bruce's post. The oncologist took the time to slowly go through my pre and post op scans and explain what I was seeing. I can't believe my good fortune of finding a doctor who is so interactive.

    John

    David, thanks for the link to scan interpretation.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    The few, the proud
    Amen Tex,

    Those of us with sarcomatoid issues need to hang-out together. I met with an oncologist for the first time yesterday. I put more details under Bruce's post. The oncologist took the time to slowly go through my pre and post op scans and explain what I was seeing. I can't believe my good fortune of finding a doctor who is so interactive.

    John

    David, thanks for the link to scan interpretation.

    Interpretation
    And now we have Jeff as well things are looking up more than ever.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Interpretation
    And now we have Jeff as well things are looking up more than ever.

    Posting
    Bruce, maybe you could post on this thread rather than the newer, duplicate one? That way we can avoid fragmenting the topics and losing sight of all the useful info and contacts on this thread. John could have read your reply to him here just as well. Even if it takes longer to load, it keeps all the material together about this, the most slippery of RCC slopes!

    I hope your oncologist has good news for you tomorrow.
  • Jeff2159
    Jeff2159 Member Posts: 108

    Interpretation
    And now we have Jeff as well things are looking up more than ever.

    Things are Looking Up
    Completed my bucket list items of playing Pebble Beach and going on a 11 day cruise to the Baltic Sea but in the mean time had to stop the sutent for the second time after 23 days as it was ripping up the previous surgical site in my mouth. The skin graft from June 20 just dissolved and I have a gash in my mouth again which is painful but tolerable but makes eating food challenging. The good news is from my CT Scan from thurs and my ONC says I can stay off Sutent for as long as I need to get my mouth to heal (and as long as I continue to get good scan results). Will get the full info tomorrow but he wanted to give me the early good news. Sutent and the power of prayer have sure worked for me

    Jeff
  • Bruce1955
    Bruce1955 Member Posts: 7

    Posting
    Bruce, maybe you could post on this thread rather than the newer, duplicate one? That way we can avoid fragmenting the topics and losing sight of all the useful info and contacts on this thread. John could have read your reply to him here just as well. Even if it takes longer to load, it keeps all the material together about this, the most slippery of RCC slopes!

    I hope your oncologist has good news for you tomorrow.

    Oncologist
    Apparently the oncologist at the local VA Hospital doesn't understand Sarcomatoid. He treatment options are " lets wait and see in 6 months" and do a localized CT then. I've made plans to see aa Oncologist in Richmond,Va's VA Hospital where I had my surgery done.
    I'm a little frustrated, maybe because they almost wrote me off and didn't do the surgery, thinking it was so large and too advanced. But I'm not giving up.
  • ClaraW
    ClaraW Member Posts: 64
    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.

    thank you dmike and alice
    My sister in law 's recent scan showed retroperitoneal lymphadenopathy and enlarging lytic lesions in her sacrum. She has declined all chemotherapy. She is comfortable and loves eating. I take her out to dinner three times a week. We have tasted all the degustation meals the restaurants have to offer within 10km radius of where we live.
    I realised a short while back that this is not about me. I want aggressive treatment for her, be it surgical or chemoradiotherapy. I stayed up numerous nights worried about her lack of interest in her own treatment. I now have come to terms that it is quality of life that she wants and if she can live the way SHE wants, then she has my full support.
    Thank you so much.
    Kindest regards,
    Clara
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    ClaraW said:

    thank you dmike and alice
    My sister in law 's recent scan showed retroperitoneal lymphadenopathy and enlarging lytic lesions in her sacrum. She has declined all chemotherapy. She is comfortable and loves eating. I take her out to dinner three times a week. We have tasted all the degustation meals the restaurants have to offer within 10km radius of where we live.
    I realised a short while back that this is not about me. I want aggressive treatment for her, be it surgical or chemoradiotherapy. I stayed up numerous nights worried about her lack of interest in her own treatment. I now have come to terms that it is quality of life that she wants and if she can live the way SHE wants, then she has my full support.
    Thank you so much.
    Kindest regards,
    Clara

    Clara's SIL
    Clara, I was happy to read your statement that your SIL is feeling well at the moment but a little concerned about her mindset, nonetheless. Even if she's highly intelligent, it's possible that she's falling into too resigned an attitude because she's recognised that her prognosis isn't as good as that of many of the contributors here. I hope I'm mistaken and she's actually taking a realistic but balanced view of her life.

    Your degustation schedule sounds just the ticket and great fun for both of you, but you say that she doesn't go out much anymore, and has little apparent interest in her treatment. You also say that she takes no exercise (not a good idea, even though you guess her BMI at about 20, which means she is slender, with no obesity-related problems - please confirm). Is she under treatment for depression? If not, might there be a case for her getting help? Depression is an almost inevitable concomitant of cancer (held at bay to some degree by some of us by exercise) and always merits exploration and help whether that be medication or talking therapies like CBT, CAT, or whatever.

    Is she receiving SRS or some other form of treatment for the lytic sacral lesion? Fox may have some useful thoughts on that subject.

    Your SIL and Fox, and Alice's John, and myself are all stage 4 grade 4, with more or less sarcomatoid change (not too sure about Fox on this parameter - ?) and the rest of us are all fighters. I hope she can draw strength from the rest of us, as we do from each other.

    A main concern for me is retroperitoneal lymphadenopathy, just like your SIL and we need to remember that it may, OR MAY NOT, be sinister. I'm suffering increasing discomfort at present and my case isn't to be discussed in detail for another week but that involves a different issue, where further surgery is imminent. The PET/CT scan I had on Thursday won't, I gather, throw any further light on the cause of the lymphadenopathy but I suppose it will reveal whether there has been further enlargement. Perhaps we can continue to compare notes on this topic?

    Have you ventured onto KIDNEY-ONC lately? There has been a spate of very interesting contributions from your antipodean (as seen from UK!) fellow-countrymen. There are some important debates being had there and there's a lot of detailed and up-to-date info to be gleaned.

    Keep enjoying those gourmet outings and please wish your dear SIL well from me.
  • ClaraW
    ClaraW Member Posts: 64

    Clara's SIL
    Clara, I was happy to read your statement that your SIL is feeling well at the moment but a little concerned about her mindset, nonetheless. Even if she's highly intelligent, it's possible that she's falling into too resigned an attitude because she's recognised that her prognosis isn't as good as that of many of the contributors here. I hope I'm mistaken and she's actually taking a realistic but balanced view of her life.

    Your degustation schedule sounds just the ticket and great fun for both of you, but you say that she doesn't go out much anymore, and has little apparent interest in her treatment. You also say that she takes no exercise (not a good idea, even though you guess her BMI at about 20, which means she is slender, with no obesity-related problems - please confirm). Is she under treatment for depression? If not, might there be a case for her getting help? Depression is an almost inevitable concomitant of cancer (held at bay to some degree by some of us by exercise) and always merits exploration and help whether that be medication or talking therapies like CBT, CAT, or whatever.

    Is she receiving SRS or some other form of treatment for the lytic sacral lesion? Fox may have some useful thoughts on that subject.

    Your SIL and Fox, and Alice's John, and myself are all stage 4 grade 4, with more or less sarcomatoid change (not too sure about Fox on this parameter - ?) and the rest of us are all fighters. I hope she can draw strength from the rest of us, as we do from each other.

    A main concern for me is retroperitoneal lymphadenopathy, just like your SIL and we need to remember that it may, OR MAY NOT, be sinister. I'm suffering increasing discomfort at present and my case isn't to be discussed in detail for another week but that involves a different issue, where further surgery is imminent. The PET/CT scan I had on Thursday won't, I gather, throw any further light on the cause of the lymphadenopathy but I suppose it will reveal whether there has been further enlargement. Perhaps we can continue to compare notes on this topic?

    Have you ventured onto KIDNEY-ONC lately? There has been a spate of very interesting contributions from your antipodean (as seen from UK!) fellow-countrymen. There are some important debates being had there and there's a lot of detailed and up-to-date info to be gleaned.

    Keep enjoying those gourmet outings and please wish your dear SIL well from me.

    Treatment
    TW,

    I couldn't agree with you more. I suspected my SIL's loss of interest and pessimism pointed towards depression with an obvious organic cause (cancer). We consulted a psychiatrist a few months ago who did not think she had clinical depression but prescribed a SNRI for her and also suggested that cognitive behaviour therapy may be more effective. She took the SNRI for a month with minimal effect (as predicted by the psychiatrist). If fact, I think the medication flattened her emotions in that she didn't feel sad or happy. She was reluctant to attend the CBT and the psychiatrist did not think she needed to persevere with it either. I guess, we have come to the conclusion that her decision was and still is informed, competent and voluntary.

    We have all expressed our concerns, worries, pain on this website. On the contrary, you have always helped others, given us hope. Yet have hardly ever breathed a word about how you feel. You write that you are suffering increasing discomfort. I am very sorry to hear that TW. Is it causing you pain? flank? abdominal?

    We are all thinking of you.

    All the best,
    C
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    ClaraW said:

    Treatment
    TW,

    I couldn't agree with you more. I suspected my SIL's loss of interest and pessimism pointed towards depression with an obvious organic cause (cancer). We consulted a psychiatrist a few months ago who did not think she had clinical depression but prescribed a SNRI for her and also suggested that cognitive behaviour therapy may be more effective. She took the SNRI for a month with minimal effect (as predicted by the psychiatrist). If fact, I think the medication flattened her emotions in that she didn't feel sad or happy. She was reluctant to attend the CBT and the psychiatrist did not think she needed to persevere with it either. I guess, we have come to the conclusion that her decision was and still is informed, competent and voluntary.

    We have all expressed our concerns, worries, pain on this website. On the contrary, you have always helped others, given us hope. Yet have hardly ever breathed a word about how you feel. You write that you are suffering increasing discomfort. I am very sorry to hear that TW. Is it causing you pain? flank? abdominal?

    We are all thinking of you.

    All the best,
    C

    Treatment
    Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

    You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

    I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.
  • foxhd
    foxhd Member Posts: 3,181 Member

    Treatment
    Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

    You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

    I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

    Alzheimers
    There must be a point where alzheimers would be welcome for some. For you wedgie, I say cut the suckers out if that option opens up. I know you will get the best care.
  • alice124
    alice124 Member Posts: 896 Member

    Treatment
    Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

    You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

    I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

    Treatment
    Tex,

    Not great news and you undoubtedly will have some difficult, important decisions to make. But believe my sincerity when I say I can't think of ANYONE more capable and informed to make the right choice(s). We all are in your corner; lean on us. In my thoughts and prayers,

    Alice
  • angec
    angec Member Posts: 924 Member

    Treatment
    Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

    You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

    I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

    TW & Wifey
    I am so sorry to hear about the new update. But please, don't even think there is a chance you will escape Alzheimer's! Take our dear FOX there! His case was much worse than yours and look how fabulous he is doing. His doctor already told him he will probably not die of RCC. TW...I forget what hospital you are seeking treatment with, I suspect it is a good one! But I urge you to get the treatments that you know are out there. Of course there is something that will prove useful for you! You have enough knowledge to know better than to think otherwise!

    I am a bit confused that you say there may have been mets before the original dx. How could that have been missed? Was it due in part to the fact that they did not use a Pet/ct scan and just a regular scan?

    I have faith that all will be ok. Please keep your spirits up and give the wife a big hug! Tell her my money is on Wedgie and she should get in on the bet that you will be just fine!

    My prayers are with you and pray that God direct you and your doctors in your decision making next week. In the meantime, you will be playing this week yes?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    TW & Wifey
    I am so sorry to hear about the new update. But please, don't even think there is a chance you will escape Alzheimer's! Take our dear FOX there! His case was much worse than yours and look how fabulous he is doing. His doctor already told him he will probably not die of RCC. TW...I forget what hospital you are seeking treatment with, I suspect it is a good one! But I urge you to get the treatments that you know are out there. Of course there is something that will prove useful for you! You have enough knowledge to know better than to think otherwise!

    I am a bit confused that you say there may have been mets before the original dx. How could that have been missed? Was it due in part to the fact that they did not use a Pet/ct scan and just a regular scan?

    I have faith that all will be ok. Please keep your spirits up and give the wife a big hug! Tell her my money is on Wedgie and she should get in on the bet that you will be just fine!

    My prayers are with you and pray that God direct you and your doctors in your decision making next week. In the meantime, you will be playing this week yes?

    What's coming
    Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

    I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

    Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
    that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

    Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

    Best wishes to your Mom.
  • ClaraW
    ClaraW Member Posts: 64

    What's coming
    Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

    I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

    Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
    that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

    Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

    Best wishes to your Mom.

    Your post upset me greatly,
    Your post upset me greatly, upon initial reading. The occult metastasis and the fast growing tumour is not very palatable. However, TW, if anyone is going to get cutting-edge, targetted treatment, it will be you. I know you will be getting the best medicine can offer! If anyone is going to respond to systemic treatment, it will be you. You are fit,have a healthy immune system, active and have a great state of mind. I am betting that your treatment will be very effective and that you will repond well!!!
    Yours truely,
    C
  • emkat
    emkat Member Posts: 21

    What's coming
    Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

    I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

    Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
    that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

    Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

    Best wishes to your Mom.

    Just wanted to share with you..
    For what its worth...
    When I joined this board a week ago, I shared what I found of your story with my husband. When I told him that you had had 3 surgeries this year, he was blown away. For him, he said surgery was the hardest thing he ever did (he's 38) and it would be a last option for him. He took a lot of strength from your story. He has been on xeloda, gemzar, and avastin for 9 cycles (21 days on, 7 days off) and has had great results with minimal side effects- (some hand/foot syndrome that is controlled by good lotion and socks, minimal fatigue) anyway, you have other options and they are still great options.
    I wish you a speedy and boring recovery! Is your wife going with you on your trip? I hope you guys have a great time with lots of golf, laughter, and fun.
  • angec
    angec Member Posts: 924 Member

    What's coming
    Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

    I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

    Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
    that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

    Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

    Best wishes to your Mom.

    That's the spirit
    TW and keep it going!

    I know there will be systemic therapy for you and that sounds like it would be the best thing. Any chance of you getting MDX by you in the UK? I am not too sure what they offer at your end.

    A few weeks back my Chiropractor was mashalling (calling wind shots - same thing?)the games that Tiger Woods had here along with many others, in Long Island, NY. He told me that there is a new driver that will let you hit the ball with so much accuracy you can do it with your eyes closed (not really :)as Tiger couldn't). So with you being an avid golfer, you must be doing fantastic!! Glad to hear that in spite of all the news you are still feeling reasonably well and going strong!

    On a side note, i suffer greatly with Fibromyalgia and it puts me flat on my back with many different symptoms daily. So to say my hats are off to all of you going through this is an understatement. Makes me say i dare not complain about any of it. You are a trooper and I can't wait until you start treatment and we see those little guys clearing up.

    Have yourself a great time this week and please keep us posted!! Hugs coming your way! Mom sends her regards, I have spoke to her about you and some others here on the boards. You all have become just like family ;)
  • garym
    garym Member Posts: 1,647

    Treatment
    Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

    You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

    I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

    Understatement...
    T,

    Not often in my life have I found myself at a loss for words, this is one of those times. Your wife is not alone in the weepy department as I find myself choked with emotion. You are one of the most informed and determined people I have NEVER met, but knowledge can be both a blessing and a curse. I suspect that the predilection for understatement applies to you as well and that you have been shielding us a bit as things have progressed, if this is true please don't hold anything back, you are entrenched in our lives so deeply that you are more than a friend. I have an enormous amount of respect for you and the star of this board you have become, if it is possible to love someone that you could pass on the street without notice then that's how I feel. I do not know what is in store for you as this battle continues, but I know it will be fought with honor and grace. I pray for an outcome that warms our hearts for years to come, but should your destiny follow a different path I know in my heart that this too will be walked with head held high.

    Godspeed my friend,

    Gary
  • angec
    angec Member Posts: 924 Member
    garym said:

    Understatement...
    T,

    Not often in my life have I found myself at a loss for words, this is one of those times. Your wife is not alone in the weepy department as I find myself choked with emotion. You are one of the most informed and determined people I have NEVER met, but knowledge can be both a blessing and a curse. I suspect that the predilection for understatement applies to you as well and that you have been shielding us a bit as things have progressed, if this is true please don't hold anything back, you are entrenched in our lives so deeply that you are more than a friend. I have an enormous amount of respect for you and the star of this board you have become, if it is possible to love someone that you could pass on the street without notice then that's how I feel. I do not know what is in store for you as this battle continues, but I know it will be fought with honor and grace. I pray for an outcome that warms our hearts for years to come, but should your destiny follow a different path I know in my heart that this too will be walked with head held high.

    Godspeed my friend,

    Gary

    Ok, now I am in tears! That
    Ok, now I am in tears! That was very sweet! Let's all keep our prayers going and pray that TW is going to get the treatment that will help him. I know it is out there!