To TW

Alexandra said:

Dear TW (Trevor)

I am poking my nose into the RCC board to join everyone else admiring your contributions and wishing you speedy recovery.

Your posts are always so compassionate, informative and so brilliantly written. As a former ESL student, I keep Merriam-Webster on my desk in order to understand every word.

All jokes aside, you are remarkable.

Love,

Alexandra

Like Djinnie and Tillie, the 1st response to my initial post back in early Feb was from you. Google had sent me to the "recovering from radical nephrectomy" thread, started in 2009 - I had no idea there was more to the site. Since, I have let moths fly here and am paying for high speed internet! : ) The scope of this site is amazing. I am here reading twice a day, combing through and scribbling notes - so thankful for the effort you have put into keeping us all informed. Please know how much it is appreciated.

ClaraW said:

onc appt
Hope your onc appointment today has shed some light...and I hope it is something reversible like cholestasis causing the raise in bilirubin and ALP, not the votrient. Praying for a better outcome. We are all in your corner.

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.

Texas_wedge said:

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.

 

 

 

 

 

From Buddhist teachings  'We are all but small droplets from the same great ocean, we ebb and flow with no beginning and no end' as such you will always be part of us, as we will always be part of you!

I hope we have an Indian Summer, so that you can spend many hours playing the game you love and in the place you love so much!

Djinnie xx

ClaraW said:

A privilege indeed

It has been one of the greatest privileges in my life to have met you T. I remember reading your first very fine post " greetings from across the pond". Re -iterating what I am alive has said - I love you T!

Clara, I'm so sorry to hear you confirm that you lost your dear SIL, to whom you felt so close.  Your absence of reference to her had led me to fear that was the case.  I'm a firm believer that 'where there's life, there's hope' even when it's somewhat tenuous.  You and I both felt your SIL was a bit too much the fatalist, which may not have helped her.  However, we all die sometime - it's solely a question of how soon. 

You rightly felt that reporting her death would be a downer and I'm anxious to try to mitigate that effect.  I know someone else who struggles with the same dilemma - my dear friend Fox indubitably fears that followers of his inspiring journey will take a nasty jolt when it comes to an end.  He and I, and quite a few others here, had dismal prognoses but few others are as noisy about it as we are!  The take home message when we pop our clogs is how far we ran beyond the expected time-tables.  We're fighters, both, and we'll stay that way to the last, so the message will not be that we all go in the end but that, in the (for me) immortal words of Donna Lee, we really are part of the crew that's changing those numbers!

Thanks everyone for the very kind words.  Nonetheless I'll still keep optimistic and time hasn't yet been called. 

My Practice hasn't been using INR tests (International Normalised Ratio - I can't remember that for long either!) for blood clotting since I've been on Fragmin, so, during the appointment on Friday, my Oncologist had a nurse take another blood sample for INR testing.  So assiduous is the care I'm receiving, that she took the trouble to 'phone later on Friday evening and told my Wife that the clotting test was re-assuring and that I could immediately stop my morning Fragmin injections.  This is good news.  (It's also convenient since the tumor spreading had limited my stomach injections to the other side and I've lately run out of uninjured stomach space and had to switch to injecting into my thigh instead).  

On Monday my next scan will take place [so no golf then   ].  The report will take the usual week or so but my Onc will be examining the images on Monday or Tuesday to see whether I have a visible obstruction that can be stented for relief and if so will arrange for an emergency admission to get that done.  

Clara, please remind me what you do that led you to such an astute analysis of my condition.  You characterised the possibilities brilliantly and almost exhaustively.  The remaining detective work is to determine which of the problems and symptoms are due to treatment and which to disease.  At the moment we're trying to determine (a) whether the cause is Votrient  (evidence would be if the symptoms abate now, with cessation of my taking it)  and (b) whether there is biliary obstruction that could be stented and we believe that the scan tomorrow morning will answer that question.  If the symptoms are unaltered by stopping Votrient and there's no mechanical explanation for them either, that would mean a metabolic cause, due to the cancer, and my end will come very soon.

The consequences are fairly clear.  If the cause is Votrient then I can never take it again (that will probably hold even if Votrient isn't the cause, because my ALT had also risen to prohibitive levels, orthogonally to the issue of bilirubin and ALP elevations).  The liver problems may then resolve, with cessation of Votrient, but I'll have been debarred from my one hope for containing the disease - Votrient.  There are no other drugs that could ethically be given to me within our NHS, with my liver problems, but return of liver enzymes to somewhere near normal levels would leave the use of yet-to-be-found treatments less definitely impossible. In Scotland there is only one specialist who does private work and we may consult him to see whether there is anything at all that he thinks he could in good conscience offer us.  If not then palliative measures are all, with a view to maintaining QoL at an acceptable level for as long as possible.

We know that there are no trials in the UK open to me with underlying chromophobe RCC (and probably none anywhere else either for which I wouldn't be disqualified on one ground or another).

If the cause isn't Votrient but a physical blockage, then a stent may solve the immediate liver problems.  In that event, though, for the reasons above, it seems that I still can't go back onto Votrient.  However, one source of pain and other incipient problems would be removed.   Regeneration of my liver would be helpful in my body's attempt to contain the cancering.

If the cause is neither Votrient nor obstructive cholestasis, I face the worst case scenario of cancer-induced cholestasis of a metabolic nature that is irreversible and will be best handled with as many enjoyable rounds of golf as possible in the short space of time remaining for me.

There are an awful lot of pointers to the metabolic cause but my hunch is that it's a case of obstructive cholestasis and that in no time I'll have a stent in place.

Meantime, I've been put back onto a rather longer run of dexamethasone (which my excellent Onc says is a significant piece of her daily weaponry) which will undoubtedly reduce pain significantly and contribute to combating the cancer.  I'm to continue with omeprazole to lessen reflux and will probably take metoclopramide as directed, three times a day, for a while, with a view to reducing or eliminating gastroparesis.  (Thanks, Kathy, for your points about your own experiences made here, or was it on Smart Patients?).

So, no Votrient, no Fragmin, possible discontinuation of omeprazole and metoclopramide before long and temporising use of dexamethasone, but continuing pain meds - morphine slow release and ibuprofen plus liquid morphine for breakthrough pain.  Well - silver linings - I may go back to modest ingestion of green tea at breakfast and you can bet your life I'll be carefully checking on interactions with the new line-up of drugs to see whether I can also add grapefruit juice back into my regular diet!  Breakfast with grapefruit juice and green tea included would be bliss indeed.  

Texas_wedge said:

Keeping going

Clara, I'm so sorry to hear you confirm that you lost your dear SIL, to whom you felt so close.  Your absence of reference to her had led me to fear that was the case.  I'm a firm believer that 'where there's life, there's hope' even when it's somewhat tenuous.  You and I both felt your SIL was a bit too much the fatalist, which may not have helped her.  However, we all die sometime - it's solely a question of how soon. 

You rightly felt that reporting her death would be a downer and I'm anxious to try to mitigate that effect.  I know someone else who struggles with the same dilemma - my dear friend Fox indubitably fears that followers of his inspiring journey will take a nasty jolt when it comes to an end.  He and I, and quite a few others here, had dismal prognoses but few others are as noisy about it as we are!  The take home message when we pop our clogs is how far we ran beyond the expected time-tables.  We're fighters, both, and we'll stay that way to the last, so the message will not be that we all go in the end but that, in the (for me) immortal words of Donna Lee, we really are part of the crew that's changing those numbers!

Thanks everyone for the very kind words.  Nonetheless I'll still keep optimistic and time hasn't yet been called. 

My Practice hasn't been using INR tests (International Normalised Ratio - I can't remember that for long either!) for blood clotting since I've been on Fragmin, so, during the appointment on Friday, my Oncologist had a nurse take another blood sample for INR testing.  So assiduous is the care I'm receiving, that she took the trouble to 'phone later on Friday evening and told my Wife that the clotting test was re-assuring and that I could immediately stop my morning Fragmin injections.  This is good news.  (It's also convenient since the tumor spreading had limited my stomach injections to the other side and I've lately run out of uninjured stomach space and had to switch to injecting into my thigh instead).  

On Monday my next scan will take place [so no golf then   ].  The report will take the usual week or so but my Onc will be examining the images on Monday or Tuesday to see whether I have a visible obstruction that can be stented for relief and if so will arrange for an emergency admission to get that done.  

Clara, please remind me what you do that led you to such an astute analysis of my condition.  You characterised the possibilities brilliantly and almost exhaustively.  The remaining detective work is to determine which of the problems and symptoms are due to treatment and which to disease.  At the moment we're trying to determine (a) whether the cause is Votrient  (evidence would be if the symptoms abate now, with cessation of my taking it)  and (b) whether there is biliary obstruction that could be stented and we believe that the scan tomorrow morning will answer that question.  If the symptoms are unaltered by stopping Votrient and there's no mechanical explanation for them either, that would mean a metabolic cause, due to the cancer, and my end will come very soon.

The consequences are fairly clear.  If the cause is Votrient then I can never take it again (that will probably hold even if Votrient isn't the cause, because my ALT had also risen to prohibitive levels, orthogonally to the issue of bilirubin and ALP elevations).  The liver problems may then resolve, with cessation of Votrient, but I'll have been debarred from my one hope for containing the disease - Votrient.  There are no other drugs that could ethically be given to me within our NHS, with my liver problems, but return of liver enzymes to somewhere near normal levels would leave the use of yet-to-be-found treatments less definitely impossible. In Scotland there is only one specialist who does private work and we may consult him to see whether there is anything at all that he thinks he could in good conscience offer us.  If not then palliative measures are all, with a view to maintaining QoL at an acceptable level for as long as possible.

We know that there are no trials in the UK open to me with underlying chromophobe RCC (and probably none anywhere else either for which I wouldn't be disqualified on one ground or another).

If the cause isn't Votrient but a physical blockage, then a stent may solve the immediate liver problems.  In that event, though, for the reasons above, it seems that I still can't go back onto Votrient.  However, one source of pain and other incipient problems would be removed.   Regeneration of my liver would be helpful in my body's attempt to contain the cancering.

If the cause is neither Votrient nor obstructive cholestasis, I face the worst case scenario of cancer-induced cholestasis of a metabolic nature that is irreversible and will be best handled with as many enjoyable rounds of golf as possible in the short space of time remaining for me.

There are an awful lot of pointers to the metabolic cause but my hunch is that it's a case of obstructive cholestasis and that in no time I'll have a stent in place.

Meantime, I've been put back onto a rather longer run of dexamethasone (which my excellent Onc says is a significant piece of her daily weaponry) which will undoubtedly reduce pain significantly and contribute to combating the cancer.  I'm to continue with omeprazole to lessen reflux and will probably take metoclopramide as directed, three times a day, for a while, with a view to reducing or eliminating gastroparesis.  (Thanks, Kathy, for your points about your own experiences made here, or was it on Smart Patients?).

So, no Votrient, no Fragmin, possible discontinuation of omeprazole and metoclopramide before long and temporising use of dexamethasone, but continuing pain meds - morphine slow release and ibuprofen plus liquid morphine for breakthrough pain.  Well - silver linings - I may go back to modest ingestion of green tea at breakfast and you can bet your life I'll be carefully checking on interactions with the new line-up of drugs to see whether I can also add grapefruit juice back into my regular diet!  Breakfast with grapefruit juice and green tea included would be bliss indeed.  

Trevor – Find myself in the unusual place of not knowing what to say. You know how very much you mean to me (and to John) and what an important chess piece you have been in our individual fight against this horrible disease.

I agree with the words written by so many here and—at the moment—feel unable to add anything original. So I hope you’ll forgive my role as a copycat and let me simply emphasize the words of Peg, Clare,  Alexandra, etc.  Hopefully, my voice will return a little later and I’ll be able to formulate words of my own. But—for now—know we're holding you close at heart and making you a headliner in our prayers. 

rae_rae said:

Stubborn

TW,

You are far too stubborn to stop fighting! I don't post here often but I do get on and still read posts and you are all family. You have brought so much not only to the kidney cancer forum but the entire Cancer Survivors Network, paving the way to improvements. Your tenacity, great sense of humor and knowledge is the glue that keeps this place chugging along. You simply are not allowed to give up. 

 

Well Said Rae Rae!

I'll post directly to Texas Wedge, but I loved what you said here!

rae_rae said:

Stubborn

TW,

You are far too stubborn to stop fighting! I don't post here often but I do get on and still read posts and you are all family. You have brought so much not only to the kidney cancer forum but the entire Cancer Survivors Network, paving the way to improvements. Your tenacity, great sense of humor and knowledge is the glue that keeps this place chugging along. You simply are not allowed to give up. 

 

Tex,  Rae has said it all really.  Sending lots of positive vibes your way.....I really can't add anything else that others have already said....just know we are all here for you, with you and thinking of you.

eims x

Texas_wedge said:

Keeping going

Clara, I'm so sorry to hear you confirm that you lost your dear SIL, to whom you felt so close.  Your absence of reference to her had led me to fear that was the case.  I'm a firm believer that 'where there's life, there's hope' even when it's somewhat tenuous.  You and I both felt your SIL was a bit too much the fatalist, which may not have helped her.  However, we all die sometime - it's solely a question of how soon. 

You rightly felt that reporting her death would be a downer and I'm anxious to try to mitigate that effect.  I know someone else who struggles with the same dilemma - my dear friend Fox indubitably fears that followers of his inspiring journey will take a nasty jolt when it comes to an end.  He and I, and quite a few others here, had dismal prognoses but few others are as noisy about it as we are!  The take home message when we pop our clogs is how far we ran beyond the expected time-tables.  We're fighters, both, and we'll stay that way to the last, so the message will not be that we all go in the end but that, in the (for me) immortal words of Donna Lee, we really are part of the crew that's changing those numbers!

Thanks everyone for the very kind words.  Nonetheless I'll still keep optimistic and time hasn't yet been called. 

My Practice hasn't been using INR tests (International Normalised Ratio - I can't remember that for long either!) for blood clotting since I've been on Fragmin, so, during the appointment on Friday, my Oncologist had a nurse take another blood sample for INR testing.  So assiduous is the care I'm receiving, that she took the trouble to 'phone later on Friday evening and told my Wife that the clotting test was re-assuring and that I could immediately stop my morning Fragmin injections.  This is good news.  (It's also convenient since the tumor spreading had limited my stomach injections to the other side and I've lately run out of uninjured stomach space and had to switch to injecting into my thigh instead).  

On Monday my next scan will take place [so no golf then   ].  The report will take the usual week or so but my Onc will be examining the images on Monday or Tuesday to see whether I have a visible obstruction that can be stented for relief and if so will arrange for an emergency admission to get that done.  

Clara, please remind me what you do that led you to such an astute analysis of my condition.  You characterised the possibilities brilliantly and almost exhaustively.  The remaining detective work is to determine which of the problems and symptoms are due to treatment and which to disease.  At the moment we're trying to determine (a) whether the cause is Votrient  (evidence would be if the symptoms abate now, with cessation of my taking it)  and (b) whether there is biliary obstruction that could be stented and we believe that the scan tomorrow morning will answer that question.  If the symptoms are unaltered by stopping Votrient and there's no mechanical explanation for them either, that would mean a metabolic cause, due to the cancer, and my end will come very soon.

The consequences are fairly clear.  If the cause is Votrient then I can never take it again (that will probably hold even if Votrient isn't the cause, because my ALT had also risen to prohibitive levels, orthogonally to the issue of bilirubin and ALP elevations).  The liver problems may then resolve, with cessation of Votrient, but I'll have been debarred from my one hope for containing the disease - Votrient.  There are no other drugs that could ethically be given to me within our NHS, with my liver problems, but return of liver enzymes to somewhere near normal levels would leave the use of yet-to-be-found treatments less definitely impossible. In Scotland there is only one specialist who does private work and we may consult him to see whether there is anything at all that he thinks he could in good conscience offer us.  If not then palliative measures are all, with a view to maintaining QoL at an acceptable level for as long as possible.

We know that there are no trials in the UK open to me with underlying chromophobe RCC (and probably none anywhere else either for which I wouldn't be disqualified on one ground or another).

If the cause isn't Votrient but a physical blockage, then a stent may solve the immediate liver problems.  In that event, though, for the reasons above, it seems that I still can't go back onto Votrient.  However, one source of pain and other incipient problems would be removed.   Regeneration of my liver would be helpful in my body's attempt to contain the cancering.

If the cause is neither Votrient nor obstructive cholestasis, I face the worst case scenario of cancer-induced cholestasis of a metabolic nature that is irreversible and will be best handled with as many enjoyable rounds of golf as possible in the short space of time remaining for me.

There are an awful lot of pointers to the metabolic cause but my hunch is that it's a case of obstructive cholestasis and that in no time I'll have a stent in place.

Meantime, I've been put back onto a rather longer run of dexamethasone (which my excellent Onc says is a significant piece of her daily weaponry) which will undoubtedly reduce pain significantly and contribute to combating the cancer.  I'm to continue with omeprazole to lessen reflux and will probably take metoclopramide as directed, three times a day, for a while, with a view to reducing or eliminating gastroparesis.  (Thanks, Kathy, for your points about your own experiences made here, or was it on Smart Patients?).

So, no Votrient, no Fragmin, possible discontinuation of omeprazole and metoclopramide before long and temporising use of dexamethasone, but continuing pain meds - morphine slow release and ibuprofen plus liquid morphine for breakthrough pain.  Well - silver linings - I may go back to modest ingestion of green tea at breakfast and you can bet your life I'll be carefully checking on interactions with the new line-up of drugs to see whether I can also add grapefruit juice back into my regular diet!  Breakfast with grapefruit juice and green tea included would be bliss indeed.  

TW, our buddy, we are waiting to hear from you! I surely miss watching the boards and seeing your name pop up with responses. I am praying that you are getting that stent right now or just playing golf!  Hopefully you are working on a hole in one?

Love ya!

ClaraW said:

Everyday
Not a day goes by without us thinking of you and wishing you well T.

I heard from TW this am.  He is going for testing today for possible stent tomorrow, then off to a round of golf.  He says he might not play well but enjoys himself.  I told him not to blame the jaundice if he doesn't play well!     He is a trooper our Trevor!

He appreciates all of our love and support and says not to worry if he is absent until Friday or Saturday, he is laying low a bit until then. He's got high priority in my prayers!