Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - An

Texas_wedge said:

Questions and answers
Firstly, R(ajeev) I'm guessing) - before I forget, is the book you mentioned (AntiCancer: a new way of life) a good read?

I hope you have taken full account of the reply Wayne has given you. He sought the opinions of friends here on the course of action he should take and, after that brainstorming round, came to the eminently well-reasoned decision he has taken.

It's all the more useful because, as he immediately recognised, you and he (and I) are in exactly the same situation of uncertainty which, alas, comes with the RCC territory. Consequently we are all at the stage of making considered decisions as to how best to tackle the situation we are in (a stage that I suppose almost all renal cancer survivors must go through - we are not alone in this respect!!).

The three of us are alike in some respects - all leading generally healthy lives and displaying none of the major risk hazards for this form of cancer: non-smokers and not over-weight and, I presume, with OK blood-pressure levels (?).

Wayne and I are both golfers and I've dabbled in many sports all my life, from athletics and cross-country, weight-lifting and martial arts to marathon running and rowing. You're still young and in good health. You're an intellectual and maybe your inclinations, your back pain and asthma have limited any sporting activity? Exercise is important for cancer sufferers (and everyone else, in fact). There are many different ways to get exercise and it's a good idea to do what you enjoy, without feeling you have to be a 'gym rat' or a 'fresh air fiend'. A bit of exercise boosts the immune system and it's known that more exercise has clearly demonstrable benefits. There's a limit when excessive taxation of the body (like ultra-marathoners, some of whom have been known to regularly run 30 miles every day!!!) leads to over-stressing the immune system and making one more vulnerable to infection. But I don't read you as likely to become a tri-athlete and even only in your 40's your doc's approval of exercise and tailoring it to your physical condition is advisable. You probably know all of this and perhaps you take plenty of exercise already. If not, I strongly recommend that you try to.

[continued in next posting, in case this becomes too long to transmit expeditiously]

Questions and answers (continued)
We three are all also alike in having higher stage ratings than initially predicted. In your case and Wayne's, renal vein invasion raised you from stage 1 to stage 3. I have no renal vein invasion but invasion just about everywhere else so stage 1 -> stage 4.

These rough similarities end at this point. I am a generation older than both of you. You are both Fuhrman grade 2 whereas I am grade 4. Wayne's tumour was around 4 times the size of yours and mine more than 11 times the size of Wayne's and approximately 47 times the size of yours. This should be of some comfort to you but I am pretty sure it won't be. Your brain, with your capacity for worry, will just conclude that no-one else's condition has any material bearing on yours.

It will also say that such information gives you no clue as to what you should be doing. However, I think that is wrong. It should demonstrate that on the cline of prognoses you could be a lot worse off and that you have a bit less need to worry than you think you have. Things can always go wrong - even if you're not ill - but your chances are really pretty good that it will turn out well for you.

While I have been writing this message I have learnt that the results from my first follow-up CT scan with contrast, on Wednesday, are on the computer system (but not yet available to me). They will show whether or not I have metastatic disease and if so whether it has spread all over my body or is limited, so far, to particular organs. So, you see, I fully understand the state of uncertainty in which you find yourself.

Now, I shall try to be more constructive for you. I've already gone on about exercise. Your virtually lifelong vegetarian diet is a big plus for you. By the way, it is the case that, generally, strongly coloured fruits and vegetables are particularly nutritious. Green capsica are less sweet than the yellow and orange ones that you like but also a very good food. I'm about to make up another smoothie in my Vitamix in which I'll incorporate even sweeter peppers (I think) - ramiro peppers from Israel which look the same as the sweet red peppers we usually get from Holland. The wide range of herbs and spices used in Indian cookery are another plus.

You have the benefit of a nice low Body Mass Index. I suppose you could become too frail if you have a vegetarian diet (good) but also do very little muscular work and worry yourself sick all the time. Using your body properly also brings cognitive benefits - it's a win-win for both body and mind.

On mind: attitude, as you know, is an absolutely crucial element in dealing with illness. On these threads, foxhd exemplifies the perfect attitude and garym has many times articulated the philosophy very well in terms of not being obsessed with what you know you genuinely cannot control but 'going for broke' on everything you can do to help yourself. He favours the military metaphor of 'attacking with extreme prejudice'.

Texas_wedge said:

Questions and answers (continued)
We three are all also alike in having higher stage ratings than initially predicted. In your case and Wayne's, renal vein invasion raised you from stage 1 to stage 3. I have no renal vein invasion but invasion just about everywhere else so stage 1 -> stage 4.

These rough similarities end at this point. I am a generation older than both of you. You are both Fuhrman grade 2 whereas I am grade 4. Wayne's tumour was around 4 times the size of yours and mine more than 11 times the size of Wayne's and approximately 47 times the size of yours. This should be of some comfort to you but I am pretty sure it won't be. Your brain, with your capacity for worry, will just conclude that no-one else's condition has any material bearing on yours.

It will also say that such information gives you no clue as to what you should be doing. However, I think that is wrong. It should demonstrate that on the cline of prognoses you could be a lot worse off and that you have a bit less need to worry than you think you have. Things can always go wrong - even if you're not ill - but your chances are really pretty good that it will turn out well for you.

While I have been writing this message I have learnt that the results from my first follow-up CT scan with contrast, on Wednesday, are on the computer system (but not yet available to me). They will show whether or not I have metastatic disease and if so whether it has spread all over my body or is limited, so far, to particular organs. So, you see, I fully understand the state of uncertainty in which you find yourself.

Now, I shall try to be more constructive for you. I've already gone on about exercise. Your virtually lifelong vegetarian diet is a big plus for you. By the way, it is the case that, generally, strongly coloured fruits and vegetables are particularly nutritious. Green capsica are less sweet than the yellow and orange ones that you like but also a very good food. I'm about to make up another smoothie in my Vitamix in which I'll incorporate even sweeter peppers (I think) - ramiro peppers from Israel which look the same as the sweet red peppers we usually get from Holland. The wide range of herbs and spices used in Indian cookery are another plus.

You have the benefit of a nice low Body Mass Index. I suppose you could become too frail if you have a vegetarian diet (good) but also do very little muscular work and worry yourself sick all the time. Using your body properly also brings cognitive benefits - it's a win-win for both body and mind.

On mind: attitude, as you know, is an absolutely crucial element in dealing with illness. On these threads, foxhd exemplifies the perfect attitude and garym has many times articulated the philosophy very well in terms of not being obsessed with what you know you genuinely cannot control but 'going for broke' on everything you can do to help yourself. He favours the military metaphor of 'attacking with extreme prejudice'.

Questions and answers (further continued)
Seeing your energetic and sensible contributions on some other threads, I got the impression that you were getting a grip and becoming reconciled to the fact that some uncertainty is inevitable and learning to live with it. However, you say otherwise and that is illustrated by your fixation on the not very meaningful 40% recurrence figure you've been given and the "not in control" remark by your doctor. Did you find the Stephen Gould article helpful? I presume English is your second language and although your command of it is
very good, I find some of your phrasing ambiguous and have to guess at what you mean (this may be due to emotionality causing you to write hurriedly?). I wasn't sure whether the doctor's remark meant that the medics are in control, not you, and that you shouldn't presume to know better than them or whether he was just commenting that you do not seem to be in control of yourself and this is not helping you. Please clarify this for me.

Looking at your analysis of the options currently on offer to you:

(1) Monitoring protocol - sounds fairly reasonable but you could keep pushing for greater frequency or for CT. However, there may be good enough reasons for the answer you've been given in terms of your general health and/or because the experts have a more optimistic view of your risk profile than you do. The CT scan in the trial will be a trial requirement for subsequent analysis purposes and that doesn't mean the radiation exposure isn't undesirable. It's a con in evaluating the trial option. If you're not in a trial then it might be preferable not to have the extra radiation exposure. (In contrast, in my situation this undesirability is heavily outweighed by considerations of my age and consequent life expectancy coupled with the imperative of frequent monitoring because my risks are, roughly infinitely, worse than yours.)

(2) "Blind" trial on pazopanib - the time and travel costs would be well justified if it does your health good. The pros you list are points well taken. So, looking at the cons I would comment as follows. The double-blind aspect is an essential of that trial design but it might be better for you if you don't know whether you're on placebo or Votrient (pazopanib). Often, subjects can guess which they're on according to their perceived response (though they're not always right). Don't dismiss it because of the blind aspect. Because of the power of the mind, you could get beneficial results from the placebo, with no side effects! The lists of possible side effects are a bit illusory for at least two reasons. One is that our biochemical individuality means that people respond very differently to exactly the same drug regimen, which is why a major thrust now is to tailoring meds for the individual patient. Another is that the lists look so similar from one drug to another because, under responsible government ordinances, reinforced by over-assiduousness on the part of Big Pharma's lawyers, they tend to list every conceivable side-effect which is enough to put one off ever swallowing a pill again!

Texas_wedge said:

CT Scan
Wow - a picture to take my mind off anything else! Are you pulling my leg or is that really you and not a craftily chosen photo from a promo for a meditation retreat!? Thanks for the very kind words and I hope you are continuing to thrive. I just responded to a text from my Daughter and said I can't expect a surgeon to drop his scalpel to call me about my results and a board discussion might be needed before breaking the news so I'm not holding my breath for that call.

Photo
Saw your idea on the other thread and clipped it from a magazine LOL. Just kidding, it's one of my favourite places to watch a sunset.

Texas_wedge said:

Questions and answers - a bit more
Votrient is the most recently approved of the new 6 treatments and from what I've read it's the most promising and the one with least bad side-effects - if it happens to be suitable for you. If it were to give you a life extension it would be worthwhile. If it prevented recurrence it would be worthwhile. It seems to me (no kind of guru, just my untutored opinion) that the most substantial possible cons are that you might suffer unpleasant s-e s from something you don't need because you don't have any recurrence (a quite likely scenario) and the resistance possibility. If the drug isn't needed that wouldn't matter; if it is needed and worked then it would be good you were getting it. The idea that you don't need it now, might need it later and may have developed a resistance to it while you're not needing it is stretching paranoia to new levels. It strikes me as chimaerical. I think there is a theoretical issue that you shouldn't allow your free-floating anxiety to attach to, viz that pazopanib might not offer you any benefit but might generate a cross-resistance to another agent that could have otherwise proved of use to you. This is a phenomenon currently under investigation with newer targeted therapies under trial, e.g. dovitinib, tivozanib and axitinib (one of the merits of which appears to be the absence of total cross-resistance with sunitinib, sorafenib and the cytokines). I don't think that's something you need to be concerned about.

(3) There's no inconsistency re availability to you - the progression through the approval stages is contingent on the outcome of the trials. Without guinea pigs and trials, nothing would receive approval.

Going onto the trial as a speculative prophylactic measure may be worth while, given your renal vein invasion, but shelling out big bucks for purely putative benefits is a different matter. I suppose you don't yet know whether you could get into the trial? Votrient became available on the NHS in England and Wales in late February 2011 and here in Scotland on 7th March 2011 and is in evaluation against sunitinib (Sutent) as the prospective first choice of treatment among the targeted therapies.

Questions and answers - final thoughts and a suggestion
It sounds to me as if you've understood your path. report quite well. The call about the wafer thin margin from the neoplasm in your renal cortex to the clear margin is patently one for an expert. Since I have zero medical training, I have zero authority to comment but it's great to hear that you have a top man involved.

Thanks for the reference to the interesting Brian Rini article, which I've skimmed through. It's disappointing that more progress hasn't been made on this front for all the endeavours of the past 30 years. We can always hope for change. I don't know what the status is of universal vaccines as opposed to ones derived expressly from a patient's own tumour but i wonder if your specimen happened to have been retained with a view to a vaccine derived from it, but presumably not. It would be interesting to know whether anything is known about any immunomodulatory propensities that Votrient may have, similar to Sutent but absent in Nexavar.

I hope you get responses from members here who can tell you more than I can, based on personal experiences but do remember that extrapolations from the experiences of others is fraught with danger. You can see from the dialogues on Sutent that it works wonders for some but is less effective for others and the side-effects show similar (but not necessarily correlated) variabilities.

Raj, I fully appreciate that what I've said may be of no interest or utility to you in which event I can only hope it may contain something of interest to someone else. So I'll close with a couple of general observations and a suggestion that I think really could help you.

The general observation is that there is no escaping the fact that we are faced with difficult decisions to be made from imperfect data and we have to make the best of it and hope we find the optimal solution. (It's a problem for the philosopher that we can't really even know whether we actually made the right decision because of a perpetual conundrum - the enigma of the subjunctive conditional proposition. We don't know what would have happened if we'd made a different decision - we can only make an educated guess - easy in cases like dodging a car coming straight at us but not so easy in situations like those facing us now.)

You can bet your life on it (maybe not the most felicitous formulation but you have to try to keep laughing- I really mean that) that, as you so aptly put it, "I believe the real people here feel what I feel". That's true for sure but most of us don't think about it as deeply as you do or torment ourselves as much. With a proclivity to OCPD I feel much as you do and I also brood too much sometimes on the "What if". One thing that's certain is that that mindset is counter-productive and bound to do us no good. So, now to the suggestion.

Wayne made reference to Gerald White's book. I don't know whether Wayne is using the related CD or whether you may have already explored that path yourself but it does seem to me that you are the perfect candidate to draw great strength and help from that source. You come from the most interesting and mysterious country in the world and one which has been the source of the great tradition of meditation. Gerald White's guided imagery programme (not the IT spelling!) is directed at stimulating the immune system into action, just as the vaccine approaches described in the Brian Rini article are but via natural non-invasive methods, the exact neural mechanisms of which are as yet unelucidated. There have been many success stories plausibly attributed to that approach (notably, on these threads, that of John Neary) and I strongly suggest that you give it a serious and sustained 'trial'. It would cost you next to nothing other than a time-commitment daily and will certainly help you to worry a lot less which, in itself would do you the world of good. It might be just what you need and possibly all that you need.

A closing caveat: I'm no kind of guru and I would hate you to place any sort of reliance on the ideas which I express purely out of friendship for a fellow sufferer. I hope that something I've said might have some value for you but the quote Wayne astutely made from Jerry White's book is worth repeating

"if you don't take charge of your own healthcare somebody else will and you won't like the results".

I can send you my land-line number in the UK so you can call me if you think I can be of any help, but, when all's said and done, control of your destiny should rest with you and no-one else.

Good luck in your upcoming discussions with your medical advisers and don't be shy of seeking explanations for everything that they recommend.

Texas_wedge said:

Questions and answers - final thoughts and a suggestion
It sounds to me as if you've understood your path. report quite well. The call about the wafer thin margin from the neoplasm in your renal cortex to the clear margin is patently one for an expert. Since I have zero medical training, I have zero authority to comment but it's great to hear that you have a top man involved.

Thanks for the reference to the interesting Brian Rini article, which I've skimmed through. It's disappointing that more progress hasn't been made on this front for all the endeavours of the past 30 years. We can always hope for change. I don't know what the status is of universal vaccines as opposed to ones derived expressly from a patient's own tumour but i wonder if your specimen happened to have been retained with a view to a vaccine derived from it, but presumably not. It would be interesting to know whether anything is known about any immunomodulatory propensities that Votrient may have, similar to Sutent but absent in Nexavar.

I hope you get responses from members here who can tell you more than I can, based on personal experiences but do remember that extrapolations from the experiences of others is fraught with danger. You can see from the dialogues on Sutent that it works wonders for some but is less effective for others and the side-effects show similar (but not necessarily correlated) variabilities.

Raj, I fully appreciate that what I've said may be of no interest or utility to you in which event I can only hope it may contain something of interest to someone else. So I'll close with a couple of general observations and a suggestion that I think really could help you.

The general observation is that there is no escaping the fact that we are faced with difficult decisions to be made from imperfect data and we have to make the best of it and hope we find the optimal solution. (It's a problem for the philosopher that we can't really even know whether we actually made the right decision because of a perpetual conundrum - the enigma of the subjunctive conditional proposition. We don't know what would have happened if we'd made a different decision - we can only make an educated guess - easy in cases like dodging a car coming straight at us but not so easy in situations like those facing us now.)

You can bet your life on it (maybe not the most felicitous formulation but you have to try to keep laughing- I really mean that) that, as you so aptly put it, "I believe the real people here feel what I feel". That's true for sure but most of us don't think about it as deeply as you do or torment ourselves as much. With a proclivity to OCPD I feel much as you do and I also brood too much sometimes on the "What if". One thing that's certain is that that mindset is counter-productive and bound to do us no good. So, now to the suggestion.

Wayne made reference to Gerald White's book. I don't know whether Wayne is using the related CD or whether you may have already explored that path yourself but it does seem to me that you are the perfect candidate to draw great strength and help from that source. You come from the most interesting and mysterious country in the world and one which has been the source of the great tradition of meditation. Gerald White's guided imagery programme (not the IT spelling!) is directed at stimulating the immune system into action, just as the vaccine approaches described in the Brian Rini article are but via natural non-invasive methods, the exact neural mechanisms of which are as yet unelucidated. There have been many success stories plausibly attributed to that approach (notably, on these threads, that of John Neary) and I strongly suggest that you give it a serious and sustained 'trial'. It would cost you next to nothing other than a time-commitment daily and will certainly help you to worry a lot less which, in itself would do you the world of good. It might be just what you need and possibly all that you need.

A closing caveat: I'm no kind of guru and I would hate you to place any sort of reliance on the ideas which I express purely out of friendship for a fellow sufferer. I hope that something I've said might have some value for you but the quote Wayne astutely made from Jerry White's book is worth repeating

"if you don't take charge of your own healthcare somebody else will and you won't like the results".

I can send you my land-line number in the UK so you can call me if you think I can be of any help, but, when all's said and done, control of your destiny should rest with you and no-one else.

Good luck in your upcoming discussions with your medical advisers and don't be shy of seeking explanations for everything that they recommend.

Lucky Girl
Hi,
Just curious where the picture was taken.

Thanks,
Wayne

keep searching for your answers and decisions- stay with CSN
We all have questions seeking answers. Here we can share our questions, answers, and experiences of all aspects of treatment, and it will help you daily. Modern medicine and our doctors are also working on our team - we are all playing to win - keep in touch with CSN - it is always just a mouseclick away!

livealive said:

Pics sceneries
I haven't had the opportunity to experience the beauty the earth has to offer, no vacations in the last 15 years or so...wish I did, it's so pretty, would like to know where, maybe I can go visit ?

Thx.

Pics sceneries
R,

The National Parks right here in the US are astounding and very accessible, The Grand Canyon is one of my favorites. Walking among the Giant Sequoias in California is a truly spiritual experience. Though we've never seen them, we know DaVinci and Michelangelo existed because of the body of work they left behind, I know God exists for the same reason. Taking the time to experience some of the beauty the earth has to offer may very well provide some of the answers you seek, it has certainly helped me.

Best wishes,

Gary

LISAinTN said:

Parks
I LOVE the National and State Parks. A vacation to me is staying in a rustic log cabin in one of our State Parks and getting out and hiking, etc. When I was little, my parents frequently took us camping to State Parks and I loved it. There's just something about the entire experience...the smell of a campfire, eating outside, the beautiful sky, trees, etc. I just love the parks.

Blessings,
Lisa

parks
Lisa,
There is nothing like being outdoors in beautiful areas.It is very spiritual for me and cleanses my soul. What part of TN are you in? I was born in Memphis, moved to California when I was 16, and now live in Nevada. I do miss the South at times.

Thanks,
Wayne