To TW

1246

Comments

  • ClaraW
    ClaraW Member Posts: 64
    Djinnie said:

    So Good to See You Back Texas!

    It is so good to see you back Tex! How are you doing? 

    Djinnie x

    Good to see you back TW :)
    TW, is your jaundice resolving? Hope your LFTs are heading in the right direction and you can get back onto Votrient soon!
  • NanaLou
    NanaLou Member Posts: 71
    ClaraW said:

    Good to see you back TW :)
    TW, is your jaundice resolving? Hope your LFTs are heading in the right direction and you can get back onto Votrient soon!

    Sending prayers your way Tex

    I just want to let you know I have enjoyed all of the research you have done and shared with all of us. I have learned so much from reading your post. Thank you for sharing with us. Know that I am Praying for you ,Thinking about you and that I Love you. keep posting we are all pulling for you. 

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

    Sending prayers your way Tex

    I just want to let you know I have enjoyed all of the research you have done and shared with all of us. I have learned so much from reading your post. Thank you for sharing with us. Know that I am Praying for you ,Thinking about you and that I Love you. keep posting we are all pulling for you. 

    Prayers

    Thanks, Nancy, it's comforting to feel appreciated and that my efforts to help us all get better informed aren't a waste of time.

  • Limelife50
    Limelife50 Member Posts: 476

    onc appt

    I continue to remember that you painted the last leaf for me Clara.

     

    There's no doubt in my mind that if sheer goodwill could cure us, none of us here would ever be ill!  The fund of affection and generous thoughts on the forum is infinite.  Just as we rejoice together at every success, we all feel it when we lose one of our friends to this awful malady.

    For that reason, I want to put out a message in this posting, while I remember, and to make the point right now in order to get past the role of the tragedian before I return to my normal optimistic take on life.  So, if (as now seems not unlikely) I leave this scene in the near future, I don't want any friends here who have unfavourable prognoses to make too much of my departure and get unduly depressed at their own prospects. 

    Before my Wife and I went to my appointment with my Oncologist yesterday, I played a very enjoyable 3-ball at Carnoustie and golfers will appreciate it when I say 'it never pains on a golf course' - I had a lot less pain (physical, that is - a joke for golfers again!) than if I'd been sitting right here at my PC.  I then dashed home to collect my Wife and drove the further 45 minutes to the appointment, all without excessive discomfort (after taking some liquid morphine, admittedly).   It was therefore a bit surreal to learn just how close to death I probably am.  (For the first time, my Wife broke down a bit as we summed up the discussion and arrived at the bottom line.) 

    I recognise that it will be all too easy for anyone knowing of my continuing physical performance levels to conclude 'Well, if it can happen to him at such short notice, what does that mean for me?!' 

    Therefore I want to make the following observations.  I'm fitter and stronger than most men but do remember that I'm nearly 71.   That's not so very old these days, but I'm not 30 or 40, or even 50 or 60 and so my life expectancy would be limited accordingly, even if I weren't ill. 

    Next, I've never met (and now almost certainly will never meet) any of you good folks.  Consequently none of you has watched my formerly smooth skin, taught over firm muscles, turn into crepe paper draped over bones, my native pallor (when not burnt) turn yellow with jaundice in the past few days and my natural gauntness transform into the sunken cheeks of a survivor of the camps.

    Finally, it must be remembered that I have an extremely aggressive pathology.  At dx (in October 2011) I was classified as Stage 4 Grade 4 with predominantly sarcomatoid histology and extensive necrosis, despite the fact that I had no observable mets and all of my other organs were completely clear.  On the most recent research into typical survival with necrotic sarcomatoid chromophobe RCC, my median survival prediction was about ten weeks from the time of my nephrectomy.  I'm thus on a lot of borrowed time, now almost two years on and they've been a very enjoyable couple of years.  I've never suffered from fatigue and for quite a while I felt a real fraud, having almost no pain (I don't feel such a fraud now, after making up a lot of time on the pain front!).

    Stage 4, Grade 4 even with no mets was indicative of a dubious future.  With a pathology that moved like greased lightning, I got a recurrence in the renal fossa, close to my spine, within weeks of my nephrectomy but that was cured with a speedy second open op, using  9 inches or so of previous incision.

    Cruelly, with the wisdom of hindsight, at that point I was declared NvED since all organs were scanned and found clear.  However, within not many more weeks, an abdominal wall tumor appeared and grew at a phenomenal speed, going from 2.5 cm to 5 cm. in 23 days!  At the same time, a couple of lymph nodes were confirmed as compromised.  Multiple mets, albeit still regional, coupled with their intrusiveness, size and location precluded any further surgical option, leaving systemic treatment as the only medical route and, although there is no known treatment for sarcomatoid chromophobe RCC I was afforded a choice between Sutent and Votrient, within our NHS. That was a no-brainer for me and I started Votrient in November 2011.  I was on it for 7 months, with the 3 month scan showing shrinkage and the 6 month, stability.  

    Liver enzymes suddenly sky-rocketed (ALT to 758) and I was off the drug for 6 weeks.  I went back on after liver numbers had become OK again and did well for the first month but figures ran amok once more after about five to six weeks and I stopped taking Votrient on Tuesday past, endorsed as having been sensible by my Onc at Friday's consult.  Unfortunately, the scan on 16th July gave a very diffeent picture from the labs tests numbers.  The ab wall tumor had progressed a little, lymph nodes were unchanged but, out of nowhere, some small lung nodules had appeared and (the real kicker) serious liver mets had appeared.  At consultation after learning of the new sites of mets, my Wife enquired about the feasibility of surgery on the liver lesions but was told that they are too serious and too extensive for any possibility of surgical intervention.

    On Monday I was alarmed by suddenly dark urine and with persistence into Tuesday, we decided to take a sample to our Practice and seek comments.  There was no blood, the colour being due to bilirubin.  I had a bloods appointment for Wednesday but it was decided to bring it forward and do it forthwith, which we did. All the numbers are now way out of (normal ranges) with bilirubins 98 (0 - 21) ALT 288 (5 - 55) alkaline phosphatase 725 ( 30 - 130). 

    At Friday's consult we were advised that with such material damage, it wouldn't pass protocol to put me on any drug treatment in place of Votrient.  Some detective work is now under way, notably CT with contrast early on Monday morning.

    My short point here is that my cancer is exceptionally aggressive and that no-one on the forum, on witnessing my precipitate demise after still being at an apparently fairly high level of physical performance, should extrapolate to their own case and conclude that they might be at death's door.

     

     

     

     

     

    Hi Texas

    I Love You

  • Limelife50
    Limelife50 Member Posts: 476

    onc appt

    I continue to remember that you painted the last leaf for me Clara.

     

    There's no doubt in my mind that if sheer goodwill could cure us, none of us here would ever be ill!  The fund of affection and generous thoughts on the forum is infinite.  Just as we rejoice together at every success, we all feel it when we lose one of our friends to this awful malady.

    For that reason, I want to put out a message in this posting, while I remember, and to make the point right now in order to get past the role of the tragedian before I return to my normal optimistic take on life.  So, if (as now seems not unlikely) I leave this scene in the near future, I don't want any friends here who have unfavourable prognoses to make too much of my departure and get unduly depressed at their own prospects. 

    Before my Wife and I went to my appointment with my Oncologist yesterday, I played a very enjoyable 3-ball at Carnoustie and golfers will appreciate it when I say 'it never pains on a golf course' - I had a lot less pain (physical, that is - a joke for golfers again!) than if I'd been sitting right here at my PC.  I then dashed home to collect my Wife and drove the further 45 minutes to the appointment, all without excessive discomfort (after taking some liquid morphine, admittedly).   It was therefore a bit surreal to learn just how close to death I probably am.  (For the first time, my Wife broke down a bit as we summed up the discussion and arrived at the bottom line.) 

    I recognise that it will be all too easy for anyone knowing of my continuing physical performance levels to conclude 'Well, if it can happen to him at such short notice, what does that mean for me?!' 

    Therefore I want to make the following observations.  I'm fitter and stronger than most men but do remember that I'm nearly 71.   That's not so very old these days, but I'm not 30 or 40, or even 50 or 60 and so my life expectancy would be limited accordingly, even if I weren't ill. 

    Next, I've never met (and now almost certainly will never meet) any of you good folks.  Consequently none of you has watched my formerly smooth skin, taught over firm muscles, turn into crepe paper draped over bones, my native pallor (when not burnt) turn yellow with jaundice in the past few days and my natural gauntness transform into the sunken cheeks of a survivor of the camps.

    Finally, it must be remembered that I have an extremely aggressive pathology.  At dx (in October 2011) I was classified as Stage 4 Grade 4 with predominantly sarcomatoid histology and extensive necrosis, despite the fact that I had no observable mets and all of my other organs were completely clear.  On the most recent research into typical survival with necrotic sarcomatoid chromophobe RCC, my median survival prediction was about ten weeks from the time of my nephrectomy.  I'm thus on a lot of borrowed time, now almost two years on and they've been a very enjoyable couple of years.  I've never suffered from fatigue and for quite a while I felt a real fraud, having almost no pain (I don't feel such a fraud now, after making up a lot of time on the pain front!).

    Stage 4, Grade 4 even with no mets was indicative of a dubious future.  With a pathology that moved like greased lightning, I got a recurrence in the renal fossa, close to my spine, within weeks of my nephrectomy but that was cured with a speedy second open op, using  9 inches or so of previous incision.

    Cruelly, with the wisdom of hindsight, at that point I was declared NvED since all organs were scanned and found clear.  However, within not many more weeks, an abdominal wall tumor appeared and grew at a phenomenal speed, going from 2.5 cm to 5 cm. in 23 days!  At the same time, a couple of lymph nodes were confirmed as compromised.  Multiple mets, albeit still regional, coupled with their intrusiveness, size and location precluded any further surgical option, leaving systemic treatment as the only medical route and, although there is no known treatment for sarcomatoid chromophobe RCC I was afforded a choice between Sutent and Votrient, within our NHS. That was a no-brainer for me and I started Votrient in November 2011.  I was on it for 7 months, with the 3 month scan showing shrinkage and the 6 month, stability.  

    Liver enzymes suddenly sky-rocketed (ALT to 758) and I was off the drug for 6 weeks.  I went back on after liver numbers had become OK again and did well for the first month but figures ran amok once more after about five to six weeks and I stopped taking Votrient on Tuesday past, endorsed as having been sensible by my Onc at Friday's consult.  Unfortunately, the scan on 16th July gave a very diffeent picture from the labs tests numbers.  The ab wall tumor had progressed a little, lymph nodes were unchanged but, out of nowhere, some small lung nodules had appeared and (the real kicker) serious liver mets had appeared.  At consultation after learning of the new sites of mets, my Wife enquired about the feasibility of surgery on the liver lesions but was told that they are too serious and too extensive for any possibility of surgical intervention.

    On Monday I was alarmed by suddenly dark urine and with persistence into Tuesday, we decided to take a sample to our Practice and seek comments.  There was no blood, the colour being due to bilirubin.  I had a bloods appointment for Wednesday but it was decided to bring it forward and do it forthwith, which we did. All the numbers are now way out of (normal ranges) with bilirubins 98 (0 - 21) ALT 288 (5 - 55) alkaline phosphatase 725 ( 30 - 130). 

    At Friday's consult we were advised that with such material damage, it wouldn't pass protocol to put me on any drug treatment in place of Votrient.  Some detective work is now under way, notably CT with contrast early on Monday morning.

    My short point here is that my cancer is exceptionally aggressive and that no-one on the forum, on witnessing my precipitate demise after still being at an apparently fairly high level of physical performance, should extrapolate to their own case and conclude that they might be at death's door.

     

     

     

     

     

    Hi Texas

    I Love You

  • Miashelle1
    Miashelle1 Member Posts: 44

    Prayers

    Thanks, Nancy, it's comforting to feel appreciated and that my efforts to help us all get better informed aren't a waste of time.

    God Bless you

    x x x

  • ClaraW
    ClaraW Member Posts: 64

    God Bless you

    x x x

    how are you TW?
    How are you doing TW?
    Love, Clara
  • cran1
    cran1 Member Posts: 139

    Stent operation successful!

    Hello friends,

     

    just to let you know dad's had the stent put in successfully and is drowsily returning to his normal self.

     

    love and best wishes to you all,

     

    Dee-dee (I think that's what Fox called me? :-D )

    Outstanding news! Your

    Outstanding news! Your bravery is an inspiration TW.

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

    how are you TW?
    How are you doing TW?
    Love, Clara

    How are you TW - Status report

    Not to beat about the bush, Clara, I'm not doing very well - but I'm feeling fine quite a lot of the time. In a way this is about where we came in - when you started this very comforting thread, in turns poetic and charged with generous sentiments. Foxy, you've just said on another thread that members can keep the good reports coming but I'm afraid I can't hold my end up at this point.  I fear there's a risk that the general enthusiasm for believing we can all get better will undo what I tried to achieve the other day in imploring my friends here not to compare their own status with mine and get into a downer when they see me go.

    Your analysis was brilliant, Clara, but unfortunately its correctness doesn't entail any prospect of return to Votrient - Votrient is now a closed book for me, the more's the pity. 

    The position now is that there is still no drug known that does anything against my histology and I'm now too ill to be admissible to any kind of trial, even if one ever appears that I might otherwise qualify for.  So, predictably, with no surgical methods, radiotherapy, chemo or other drug therapy to deploy and no possibility of any clinical trial, we're into pure palliation, aiming to buy a few more weeks of acceptable quality life and hoping that something might turn up. 

    One never knows until the end - the fact that no drug has so far been found that can handle my pathology doesn't underwrite the proposition that no such silver bullet is possible. We may have such a drug already that hasn't been tried on it.  After all, in the whole,  world-wide medical literature only about 20 cases of my histology have been reported so far and so far as we know I'm the only case of widely metastatic, extensively necrotic and predominantly sarcomatoid Chromophobe RCC still alive - so none of the newer drugs has so far been tried out on it. Votrient did seem to be working for me!

     

  • angec
    angec Member Posts: 924 Member

    How are you TW - Status report

    Not to beat about the bush, Clara, I'm not doing very well - but I'm feeling fine quite a lot of the time. In a way this is about where we came in - when you started this very comforting thread, in turns poetic and charged with generous sentiments. Foxy, you've just said on another thread that members can keep the good reports coming but I'm afraid I can't hold my end up at this point.  I fear there's a risk that the general enthusiasm for believing we can all get better will undo what I tried to achieve the other day in imploring my friends here not to compare their own status with mine and get into a downer when they see me go.

    Your analysis was brilliant, Clara, but unfortunately its correctness doesn't entail any prospect of return to Votrient - Votrient is now a closed book for me, the more's the pity. 

    The position now is that there is still no drug known that does anything against my histology and I'm now too ill to be admissible to any kind of trial, even if one ever appears that I might otherwise qualify for.  So, predictably, with no surgical methods, radiotherapy, chemo or other drug therapy to deploy and no possibility of any clinical trial, we're into pure palliation, aiming to buy a few more weeks of acceptable quality life and hoping that something might turn up. 

    One never knows until the end - the fact that no drug has so far been found that can handle my pathology doesn't underwrite the proposition that no such silver bullet is possible. We may have such a drug already that hasn't been tried on it.  After all, in the whole,  world-wide medical literature only about 20 cases of my histology have been reported so far and so far as we know I'm the only case of widely metastatic, extensively necrotic and predominantly sarcomatoid Chromophobe RCC still alive - so none of the newer drugs has so far been tried out on it. Votrient did seem to be working for me!

     

    TW :(  I have posted some

    TW :(  I have posted some info for you on SP not too long after your post about resuming Votrient at 200 mgs.  Did your enzymes (liver) come back to normal as of yet? Mom's Onc did say he would try once more at 200 mgs. if it was a go.  That would be the last time and the least amount you can or should use. (Even though we know of someone who has used less).  

     

    OK, I did a little brain storming.  I would even start the Sutent as another resort.  It was offered to you in the beginning and what have you got to lose? Just because no other drug has been tried doesn't mean another drug shouldn't be tried.  If there were no trials to say for sure it didn't work then who is to say it won't work?  Am I missing something here?

    Check also this link here from SP.. Is evormilus an option for you? 

    https://www.smartpatients.com/sb_posts/search?utf8=%E2%9C%93&q=sarcomatoid

    TW, i would take a chance and use the 200 mgs. if the choice is yours.  I am sure you even have some left at home, no doubt.  How about the 37.5 of Sutent? I just feel like they have given up when they should be offering something more.  

    https://www.smartpatients.com/forums/1-conversations/topics/1876-husband-has-metastatic-renal-cell-carcinoma-with-sarcomatoid-tendencies#sbposts-18186

    In the link above they are going to use Sunitinib/Gemcitabine or Sunitinib for his sarcomatoid RCC.

     

    Is Cabo an option?

    Here is another article i found.

    http://www.archivesofpathology.org/doi/full/10.1043/1543-2165-133.11.1857

     

    I hope you don't mind that i have posted the ideas and info above, but giving up can't be an option.  In any case, my prayers and heartfelt thoughts are with you.  Are you home yet TW?

     

    Love you,

    Ange

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    cran1 said:

    Outstanding news! Your

    Outstanding news! Your bravery is an inspiration TW.

    Order of messages

    Just in case anyone reads cran1's message and thinks my latest news is all good, I should point out that the postings here aren't in strict chronological order at this juncture!

  • ClaraW
    ClaraW Member Posts: 64

    How are you TW - Status report

    Not to beat about the bush, Clara, I'm not doing very well - but I'm feeling fine quite a lot of the time. In a way this is about where we came in - when you started this very comforting thread, in turns poetic and charged with generous sentiments. Foxy, you've just said on another thread that members can keep the good reports coming but I'm afraid I can't hold my end up at this point.  I fear there's a risk that the general enthusiasm for believing we can all get better will undo what I tried to achieve the other day in imploring my friends here not to compare their own status with mine and get into a downer when they see me go.

    Your analysis was brilliant, Clara, but unfortunately its correctness doesn't entail any prospect of return to Votrient - Votrient is now a closed book for me, the more's the pity. 

    The position now is that there is still no drug known that does anything against my histology and I'm now too ill to be admissible to any kind of trial, even if one ever appears that I might otherwise qualify for.  So, predictably, with no surgical methods, radiotherapy, chemo or other drug therapy to deploy and no possibility of any clinical trial, we're into pure palliation, aiming to buy a few more weeks of acceptable quality life and hoping that something might turn up. 

    One never knows until the end - the fact that no drug has so far been found that can handle my pathology doesn't underwrite the proposition that no such silver bullet is possible. We may have such a drug already that hasn't been tried on it.  After all, in the whole,  world-wide medical literature only about 20 cases of my histology have been reported so far and so far as we know I'm the only case of widely metastatic, extensively necrotic and predominantly sarcomatoid Chromophobe RCC still alive - so none of the newer drugs has so far been tried out on it. Votrient did seem to be working for me!

     

    T
    Dearest T,
    I am so hoping you could go back on votrient! Is your LFT not coming down? Oh T, I wish a drug will become available to you soon. In the meantime can you take something at a reduced dose to bridge gap?
    You cannot leave us T!! None of us will let you leave!!!!
    We love you dearly.
    Clara
  • ClaraW
    ClaraW Member Posts: 64
    ClaraW said:

    T
    Dearest T,
    I am so hoping you could go back on votrient! Is your LFT not coming down? Oh T, I wish a drug will become available to you soon. In the meantime can you take something at a reduced dose to bridge gap?
    You cannot leave us T!! None of us will let you leave!!!!
    We love you dearly.
    Clara

    sincerely
    T, I sincerely feel that I've known you for a long time. You've been my kindest friend and my mentor in this journey. I love you and I can't let you go :(
  • cran1
    cran1 Member Posts: 139

    Order of messages

    Just in case anyone reads cran1's message and thinks my latest news is all good, I should point out that the postings here aren't in strict chronological order at this juncture!

    Indeed TW. I apolgize for the

    Indeed TW. I apolgize for the order of these things. Hang in there T.

  • angec
    angec Member Posts: 924 Member

    Order of messages

    Just in case anyone reads cran1's message and thinks my latest news is all good, I should point out that the postings here aren't in strict chronological order at this juncture!

    TW, I am with Clara.  I don't

    TW, I am with Clara.  I don't think I will be able to come back to these boards if I do not see your name there, daily, as always!  I am not ready to give up!   We all have so many questions at this point and i know you are not able to answer them, like about your liver numbers improving.  I hope you don't feel too bad at the moment!  Remember what i wrote to you in the PM last week. This is not the end at all!  I hope to speak to you again when all is said and done!  You know what I mean! ;)  

    I want to send my thoughts and love out to your dear wife and daughter and let them know we are here for them and thinking of them! I love you Trevor and I am very sad at the prospects at the moment... UNLESS!

    Your friend always,

    Angela

     

    PSS.. remember the 100 mg dose.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    cran1 said:

    Indeed TW. I apolgize for the

    Indeed TW. I apolgize for the order of these things. Hang in there T.

    Indeed TW

    cran1 - thanks for the good wishes and there was nothing for  you to apologise for - you weren't out of time order - I was out of time sequence when I wrong-footed you by using the facility the CSN s/w has for manipulating these things.  I wanted to respond as closely as possible to Clara's message so I hit the response button on her message and repeated the first words of her subject title to optimise the likelihood that my reply would be close to hers instead of appearing as the last message, right after yours, where it 'should' have appeared.  So your message, which you wrote before hearing my bad news just unfortunately looked as if it came after it!

    A robust sense of humour is a great asset for us all and in a macabre way, the 'I'm about to die' - 'Wow, great news, outstanding!'  was fairly funny!

  • srbelle1
    srbelle1 Member Posts: 123

    How are you TW - Status report

    Not to beat about the bush, Clara, I'm not doing very well - but I'm feeling fine quite a lot of the time. In a way this is about where we came in - when you started this very comforting thread, in turns poetic and charged with generous sentiments. Foxy, you've just said on another thread that members can keep the good reports coming but I'm afraid I can't hold my end up at this point.  I fear there's a risk that the general enthusiasm for believing we can all get better will undo what I tried to achieve the other day in imploring my friends here not to compare their own status with mine and get into a downer when they see me go.

    Your analysis was brilliant, Clara, but unfortunately its correctness doesn't entail any prospect of return to Votrient - Votrient is now a closed book for me, the more's the pity. 

    The position now is that there is still no drug known that does anything against my histology and I'm now too ill to be admissible to any kind of trial, even if one ever appears that I might otherwise qualify for.  So, predictably, with no surgical methods, radiotherapy, chemo or other drug therapy to deploy and no possibility of any clinical trial, we're into pure palliation, aiming to buy a few more weeks of acceptable quality life and hoping that something might turn up. 

    One never knows until the end - the fact that no drug has so far been found that can handle my pathology doesn't underwrite the proposition that no such silver bullet is possible. We may have such a drug already that hasn't been tried on it.  After all, in the whole,  world-wide medical literature only about 20 cases of my histology have been reported so far and so far as we know I'm the only case of widely metastatic, extensively necrotic and predominantly sarcomatoid Chromophobe RCC still alive - so none of the newer drugs has so far been tried out on it. Votrient did seem to be working for me!

     

    I have not had an opportunity

    have not had an opportunity to know you since I am relatively new here; I respect what you are sharing and the description of your particularly aggressive cancer type.

    my husband is having a nephrectomy tomorrow and I am terrified; your taking the time to describe your cancer and distinguish it from other types is truly an act of grace and unselfishness.

    by so doing, you are sharing hope for others at a time when you are I'll and facing the end of your treatments with all that this means.

    i want to thank you and hope to see you posting here; thank you for keeping it real.

    sarah

  • BDS
    BDS Member Posts: 172
    To Texas_wedge

    Well unfortunately, I have been behind on reading/writing posts on CSN.  A week ago me, my wife and my daughter jumped out of a perfectly good airplane. What a rush! To use your previous post quote from Dr. Daivd B. Agus "Some people live to the day they die; others die the day they are diagnosed."  Without getting too sappy, it is with great concern and sorrow that I now read about your current condition. Your knowledgeable contributions here on CSN have touched many lives and my thoughts and prayers are with you. You have left lifelong impression on all of us here on CSN. I think I can speak for all of us, when I say, even though none of us will probably ever meet face to face know that you have friends here on CSN. - BDS   

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

    TW, I am with Clara.  I don't

    TW, I am with Clara.  I don't think I will be able to come back to these boards if I do not see your name there, daily, as always!  I am not ready to give up!   We all have so many questions at this point and i know you are not able to answer them, like about your liver numbers improving.  I hope you don't feel too bad at the moment!  Remember what i wrote to you in the PM last week. This is not the end at all!  I hope to speak to you again when all is said and done!  You know what I mean! ;)  

    I want to send my thoughts and love out to your dear wife and daughter and let them know we are here for them and thinking of them! I love you Trevor and I am very sad at the prospects at the moment... UNLESS!

    Your friend always,

    Angela

     

    PSS.. remember the 100 mg dose.

    Differences in survival

    Well, duly re-installed at home and feeling much better than we need to remember that I truly am.  Seated at my PC after grocery shopping on the way home and getting us a light evening meal and keen to catch up a bit more with everyone.

    Ange and Clara, I can only offer you one guarantee viz that I won't go any sooner than I have to.  You are two of our most valiant carer/supporters who give a great deal to every member of the forum so please don't think of stopping unless you have to for some reason.  Remember that we have a wide spectrum of patients with widely divergent prognoses and so it's inevitable that some will go as time passes.  I've been hard hit by the passing of two fine men recently in Chris Battle and Tony Johnson, major figures on the now defunct ACOR KIDNEY-ONC site and a key precursor of the magnificent re-incarnation in SP  (for those who don't yet know, that's the Smart Patients website that's leading the charge in the new model of participatory medicine and the patients' power to expedite progress on both research and treatment fronts alike - particularly commended to those who are most ill and those who are more academically inclined.)

    Those of us who were stage 4 (and even more so if also grade 4) at dx are bound to pop off a bit, or a lot, sooner than those who aren't. However, how much sooner is to a surprising extent down to us. Fox and I were sensibly anticipated to hand in our dinner tickets a couple of years ago but we've resisted so far.  Hell, what's life worth without a bit of a challenge! 

    Anyway, I've too many substantial projects going on, a lot of things I want to get written and too much curiosity to assuage.  I want to stick around to be certain that Alice is going to be fine (and that's not to the exclusion of John and our other 4 x 4 companions and our whole band of warriors); I want to follow the Fox saga for as long as I can and I want to continue to enjoy my series of debates with Neil and Gary's unapproachable talent for jokes, hilarious stories etc, all shot through with the insights of a real philosopher of life.

    So, going to keep going on to study what inspires, see what transpires, and find out when this body expires.  Love to everyone, T.  

  • foxhd
    foxhd Member Posts: 3,181 Member
    BDS said:

    To Texas_wedge

    Well unfortunately, I have been behind on reading/writing posts on CSN.  A week ago me, my wife and my daughter jumped out of a perfectly good airplane. What a rush! To use your previous post quote from Dr. Daivd B. Agus "Some people live to the day they die; others die the day they are diagnosed."  Without getting too sappy, it is with great concern and sorrow that I now read about your current condition. Your knowledgeable contributions here on CSN have touched many lives and my thoughts and prayers are with you. You have left lifelong impression on all of us here on CSN. I think I can speak for all of us, when I say, even though none of us will probably ever meet face to face know that you have friends here on CSN. - BDS   

    Prognosis

    Tex you are of course correct. Stage 4 kidney cancer patients are living on a prayer. But since I don't pray, I guess I haven't pissed off enough of the gods yet. Which goes to prove something. But I won't over think it. I'll just keep moving forward as you do. If there is nothing else to share with others, I hope they learn to not dwell on the final bell. Far to much to do first. Unlike you and Neil, I have decided to enjoy every minute as a retiree. I so much enjoy not being to academic or clinical. I may be getting stupider but sometimes ignorance is bliss. Things may change after my next rounds of IL-2 but I will be so miserable for the next couple months that I don't want to even think about it yet. If I could share my time left with you, I would. I should be gone already so my longevity has only been borrowed anyway. Thank You whoever has been looking out for me. (still a fair amount of survivors guilt going on.) But..... we can't spend time on negative thoughts. Can we?.... I have next week to live free. If only I could cure my slice... Maybe I'll just put on my leathers and ride. Fall foliage is beginning and southern New England is beautiful! I can get to the beach or mountains and be home for supper. It kind of helps having both so close because time is so precious. Now if Alex was within reach.........who would need golf clubs.