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Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - Any Vaccines ? Options

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Diagnosed 11/2011 - Open Partial 01/2012 - Pt3a - 2.5 cm clear cell, Fuhrman grade 2, renal vein invasion, am a high risk - with prognosis of 40% recurrence probability - Early 40's, with generally OK health (some back pain from a disc herniation - well managed, asthma - well managed)

Options being given to me are

(1) Monitor with ultrasound + xray every 6 months - I am saying this is not adequate, but they tell me - that is standard monitoring protocol. When I asked for monitoring by CT, I was told "we don't want to expose you to so much radiation (but they can on the blind trial ???)"

(2) Blind clinical trial of Pazopanib for 1 year - 2 hour trip 1 way for doctor visits, will need several during trial, CT at month 5, 9, and 12, blood tests for liver function (I suppose there are serious side effects ?)

Pros -
-- Monitoring,
-- "Maybe" the drug helps prevent recurrence, "maybe' delays it ? That's what they are testing for
-- Clinical trial led by one of the best RCC doctors in the NY area

Cons -

-- Blind Trial - They won't tell me if they give me drug or placebo
-- Side Effects of drug - hypertension, diarrhea, nausea, vomiting, liver damage (10%), Possibility of heart failure(rare),
-- Side Effects - They are in phase 1 of Study To Assess Long Term Safety Of Pazopanib - ClinicalTrials.gov Identifier: NCT00387205
-- For placebo, what use is it to me ?
-- Resistance to drug - should there be a recurrence
-- Drug only proven for PFS by 12 months in metastatic patients - we really don't know if it prevents formation of tumors or spread

(3) I could - not sure yet, but go on Pazopanib directly,

-- they say it's not approved for stage 3, (but OK to give under blind trial ???),
-- may have to pay directly, about $8000/month, which is very pressing
-- resistance possibility should recurrence occur
-- I don't know whether I will need it, but am told I am high risk due to the renal vein invasion
-- They tell me tumor size was small,
-- I did not remove the kidney, they had margin, I don't understand the path report, but frozen section states cortical neoplasm < 1 mm from benign margin - and 1 doc says that is very little, consider removing the kidney, except the surgeon here is the best in NY - every doctor has attested to his capability

Questions / Requests

(1) Does anyone know of any adjuvant therapy ? Experiences ?
(2) Knowledge of vaccines ? I did find this - if anyone cares - http://kidney-cancer-journal.com/rini_v9n4.pdf

I meet all the doctors again this week, but, I am thinking, for weeks, what do I do ? I have consulted various oncologists, tired of thinking, prayed, and forgive me for saying this (should there be a god, listening) tired of praying, scared (very, when I think of the magnitude of what's happened over the last 3 months since November 28, 2011).

I want to do every single thing I can to help myself, at-least while I can. I did read the median is not the message, and I am reading the book "AntiCancer A new way of life", but the real question is, has this "Tangibly" helped other people, the diet, the exercise ?

Soliciting Concrete specific proven recommendations. Please write if you have any. I am not sure - but doctors look at this in an abstract manner, I believe the real people here feel what I feel.

Many thanks, and my best wishes.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi Friday,

Well first off, let me say I am sorry you are joining the club. Our stories are very similar. I am 47, non-smoker, very active and in shape. I have never had anything wrong other than normal colds, alergies, etc. In early December I suddenly had blood in my urine followed by flank pain. A trip to the ER and a few ct scans later I get the sobering news that I have a mass in my kidney. Two days later the urologist is telling me that it is small (4cm), caught it early, and surgery will take care of it. I did all the scans and tests before surgery and all pointed to stage 1. I had the surgery 1/ 17 and it went well, got it all. All was good. About a week later I had my follow up appointment. The path report came back as 4 cm, grade 2, clear margins, encapsulated but with some renal vein invasion, so stage 3. The urologist said that even though I went from stage 1 to 3 that the followup would be the same, chest x ray every 3 months, ct scan every 6. I didn't like that answer so I asked my family doctor for advice. After some research, she told me the same. I researched on my own and found a trial in my area for a drug, Everolimus, in a phase 3 trial for preventing spread in stage 3 patients like myself. I made an appointment with the oncologist conducting the trial. He had me do all the testing, blood work, ct scans of chest, pelvis and abdomen. The blood and chest were fine, will get the results of the others next week. If all is good, I can begin the trial. It is a blind trial as well, but the way I see it is that whether or not I get the drug, I have established a relationship with an oncologist, and I am going to be closely monitored. If it does come back, it will be caught early. In Gerald White's book he says that " if you don't take charge of your own healthcare somebody else will and you won't like the results". I am doing everything in my power to increase my chances of staying cancer free. Exercise, dietary changes and most of all, a positive attitude.

Best wishes ,

Wayne

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I sent you a private email, if you can reply ?
Thx.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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]

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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'.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Dear Tex,

I really really hope your scan results come back much better than you think. I can't say how much I admire the support you provide to all the other members here when you are facing such uncertainty yourself. You're an incredible person. PS I love the strongly-coloured fruits & veggies too :-)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

One Lucky Girl - how arch can one get? Now I really don't know! That's worthy of the very best jokers on this forum.

Anyway, I shall choose to believe that you're married to One Lucky Boy!!!

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

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.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

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

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Wayne,

I live in East TN, about 30 minutes west of Knoxville. I've not been to Memphis yet. I was born and raised in Minnesota, but moved here 14 years ago. I love both places. MN is much flatter, but the further north you went, we had wonderful places to visit like Duluth, MN with Lake Superior and lots of other pretty scenery. Lots and lots of lakes. (Land of 10,000 lakes. Why they call it that, I don't know since there are closer to 12,000. lol) I don't miss the tornadoes and that type of weather that came with the flat land up there. Although, we had several different tornado warnings here last weekend and ended up with myself, my husband, a 50 lb. dog and 2 cats under the basement stairs. We lost 2 trees, but nothing like what other people suffered throughout the country last weekend.

I've been to CA twice and to NV, once. (Las Vegas) It's fun to see different parts of the country.

Blessings,
Lisa

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi,
Just curious where the picture was taken.

Thanks,
Wayne

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Wayne,

The photo was taken at Cala d'Hort, Ibiza. The island (rock) is called Es Vedrà, an uninhabited nature reserve. Legend has it that it's a mystical place with magnetic forces around it (i.e. compasses go haywire). Sunsets there are spectacular :-).

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi Lucky Girl,

Spain is on my bucket list, as is Italy and Greece. Got to start scratching them off and getting it done! The photo reminds me of the Big Sur coastline, a mystical place of it's own.

Thanks,
Wayne

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Wayne,

I think you'll love them all (don't forget Switzerland ;-). I have also visited Big Sur and have hiked in the Grand Canyon and think they are awe-inspiring. It's wonderful to live on a planet with so many beautiful places -- I want to see as many as I can. Love your pic too.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Tex, thank you, I am sincerely grateful for you taking the time to write. If you would, yes, please send me your #. I have an appt. tomorrow morning, but I can try and call - in your email, please also let me know what hours I can call until.
The book is worth it to me, I don't have much knowledge about cancer, so it's worthwhile, next I will check out the book Wayne recommended, I read the median is not the message.
I have to get a walk, they still have a stent in me, so I am somewhat restricted per their direction, but I want to walk some.

Wayne, I have your #, will call either tonight or tomorrow.

Thank you both.

In gratitude,
R.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Wayne, I left a message. I didn't realize you had a cold until I checked your post. Tylenol is not advised for CKD, maybe Advil ? I don't know, but ask your doctor if they are still around. You may also call any large pharmacy's 800 number and ask the pharmacist available.

Texas -

The book, is a good read for me, it's informative, and somewhat inspiring, prods you to turn away from the statistics, I kinda need that, I have only read 3 chapters so far. For you, I am not sure, but, check it on Amazon, has excellent reviews. ISBN-10: 0670021644.

I tried golfing, bruised a finger, didn't have gloves, my friend and neighbor takes me to the driving range when he goes, I managed to get some off the ground. That said, despite the asthma, I have been doing some moderate exercise about 4-5 times a day at the local health club, had barely started riding a mountain bikes, albeit on the streets, and the local park, so not a couch potato, but not hyperactive, sweated sometimes.

I still have a stent inside, so they want me to restrict activity until they take it out.

I met with an oncologist today (still feels weird saying this, it was "other" people went to oncologists, I know, get over it, it's already established, trying, still surreal), he says he can monitor me more aggressively than the surgeon, 6 month CT's or something, whereas surgeon offered ultra-sounds and x-ray or the trial.

Today's guy said he really does not "know" whether the risks from the drug outweigh the benefits, the risk reward profile is not established for stage 3, which is why the trial. In people with spread, the risk reward is easier to establish, as the risk from cancer is now much higher. He offered the Everest trial, Wayne is intending going into. I did mention I could just take the drug they were offering me in the trial, and he acknowledged the internal inconsistency of his argument, i.e. OK to take drug in trial, but not OK outside. That's besides the point though, the unknowns are (a) I don't know whether I will need the drug (b)In a trial, whether I receive the drug, and (c), whether the drug works. They are testing an extrapolation from metastatic treatment to metastasis prevention.

I may be able to get the 6 monthly monitoring outside the trial, so I don't need to get into the trial for that. That leaves the 50% chance of getting the drug in trial, which I don't know whether I need, nor do I know whether it works, and NOR do we know the long term (if there be such a term) side effects of these drugs.

I already computed the benefit probability of the drug on trial, is 0.10 or 10%. The benefit probability outside the trial is 20%, doubled since I know I receive the drug. Flip side, placebo effect, unlikely, I know the 50%ness of receiving it.

I am also cynical, by nature, don't trust corporations and governments, who says the trial is randomized, the computer does, so who's to say the allocation is not "managed" to skew the metrics of success towards patient with better prognostic indicators ? Oh, the IRB (Internal Review Board), and who is that made of ? You scratch my back, I scratch your back.

The doctor from the NY hospital told me "You are not in control" when I pushed him to mitigate the risk of recurrence. I am trying to mitigate the risk of recurrence, and he said I am not in control. I guess he is right, but I am meeting people, might I "feel" better. No one really knows though. Nomograms works for populations, situations like ours, and anomalies to these large statistical data based models. 4 people in a trial of some hundreds had small tumors invade a renal vein.

I have hit a wall, can't analytically solve this one, reached a failure of intelligence, given the absence of information. Now it's coming to other skills, trust, faith, the higher power, the inner voice. Always been too dense to listen. Maybe it's an event to form a karmic imprint ? Or maybe there is a God, after all ? It's all in question.

Raj.

stacy1111
Posts: 3
Joined: Mar 2014

Hi Wayne,

I'm Stacy and have similiar situation. Im 39 healthy no risk factors and ended up in ER dx with CCRCC stage 3 grade 4. Radical Nephrectomy 1/15/14 tumor size 8.5 cm. My oncologist wants me to ge into Everolimus study for adjuvant therapy. The center is 3 hours away and I was wondering what your experience with the drug was if you did not reveive the placebo. ANy advice would be greatly appreciated. Thanks! stacy

adobe
Posts: 72
Joined: Feb 2012

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's picture
livealive
Posts: 127
Joined: Feb 2012

So I have some updates.

I did the CT scan, next they need me to do an EKG, after which they may clear me for the double blind trial for Pazopanib. However, I have the options of going on the drug directly, as well being monitored as well as I would on the trial, without going into the blind trial. Many schools of thought, however, why blindfold myself and go on a trial ? If I can with open eyes, either take the drug (same as on trial), or monitor (as if on placebo)?

I also have to do some blood tests etc. Maybe soon.

Looking for guidance, prayers, wishes, will take anything that helps.

Thanks.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Raj,

With all else being equal, knowing that you are actually taking the Pazopanib as opposed to being in the trial and adding more anxiety wondering if you are getting the placebo, sounds like an easy decision to make. Unless there are some cons, like cost & who is footing the bill etc., I'd take the drug. That way at least you will be in control.

Good luck,

Gary

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

The doctor brought these questions up - maybe GaryM and he chatted.

- Insurance may, or may not cover, they definitely need a pre-authorization. If they tell me for sure, I can sell the condo, but, no one is telling me for sure.
- It might actually prevent / delay recurrence - no one knows, hence the trial (pro)
- 5 out of 6 doctor's will not prescribe the drug outside trial, since it's not approved for stage 3, and yet, they are willing to subject me to it under the label of trial.
- One of the most prominent doctor's on RCC tells me the cells can survive by osmosis, but Pazopanib prevents the growth of new blood vessels and keeps tumors from forming. Not sure if it kills cells that have not yet formed a tumor. So what about after the medication is done ?
- She also tells me why subject your immune system to this drug, and my immune system might be able to kill if there are residual cells that might have entered through the vein invasion.
- She is willing to monitor me
- She said she won't push the trial on me, it's not necessarily the silver bullet.
- Resistance, I might be using up one of the "bullets", when it's not needed.
- Quality of Life - Side-Effetcs
- The Altruistic aspect, I have told them, I can't give what I don't have, I have to try and save myself before I save others.

About the benefit of extra monitoring from the trial, I got that covered, some of the best doctors are willing to monitor me very aggressively.

If I don't do the drug,

- and there is recurrence, then, it would be like, "Had I taken that drug..."..
- no one knows - if the drug works, I might be taking away the most aggressive way of treating this..
- I feel OK, right now, but I also felt OK, when I had the tumor in me, so, it's what we don't see...

If I do the drug -> back to the cons..and pro's

The question remains on the drug. I am the one who has to decide, and am aware of how frustrating this can be for others.

The one thing, the anger has diminished. I am thankful to everyone for their candor, specially, Fox, Tex, Lisa, and Gary.

The question still remains. Drug ? Trial ? Monitor ?

Gratefully,

R.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Raj,

Have you considered trying Gerald White's MAARS program? I don't "yet" have first hand knowledge/experience with it (perhaps Tex or Jon will offer more), but it would seem to be a very good option for you.

As I understand it, it involves meditation and the power of the mind to bolster your immune system and help identify and kill cancer cells. Long story short, Mr. White had a 20lb (yes 20lb) RCC tumor and kidney removed about 20 years ago and was eventually given 3 months to live. He did not accept this and went about developing the MAARS program which he credits with saving his life. He remains alive and well today and is dedicated to helping others beat cancer, the program cost (book & CD) is under $50 I believe, and of course there are no side effects. Just Google Gerald White MAARS for complete information.

You could take advantage of being closely monitored as mentioned in your post, actively go on the attack using that impressive brain of yours, protect and improve your own immune defenses, and save the drugs for IF IF IF it comes back. Maybe by then we will have that magic silver bullet, I'll defer to foxhd on that.

Just a thought,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Spot on Gary! I was about to ask Raj if he's spoken with Wayne about MAARS or ask Wayne if he's dipped into the programme himself.

I've told Jerry that I thought Raj a perfect candidate for MAARS and he has said he would like to do anything he can to help him.

So, Raj, if you would like to invite extra help from the grand old man in this arena please either phone me or post here and let me know and I'll put you in touch with Jerry. He's a highly accomplished engineer, plasma physicist and inventor so you would be on the same wavelength intellectually.

Otherwise, Gary has anticipated the analysis I was intending to make. Is there a closing date for the pazopanib trial? Even if there is, my guess is that it would be a soft date and they would welcome you in later should you elect to offer yourself as a subject. It seems a good option to defer the decision, get your stent out, keep getting fitter and build your immune strength as much as possible, all the while being closely monitored so as to be able to leap into action IF/when the need should arise.

Let me know about Jerry - I'll be available this afternoon and evening from about 7:30 GMT and probably on these threads off and on meantime.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

So I met my surgeon, I trust him, and like him, enough to put my life in his hands.
First thing, as I enter the room, I heard
"I don't mean to be judgmental, but we, the doctors, nurses simply don't have enough time to keep going back and forth with your over email. Just give it up (i.e. control".
And in all fairness, I have keep a sustained dialogue going with the nurse, but she had told me, email me if you have questions.
I thanked him for his candor, and that I prefer being talked to directly.
He explained my pathology report.
In all this I forgot to tell him about my groin pain, he had walked out of the room and led us out. All sorts of thoughts keep going through the mind, some of you can appreciate. More worry. Maybe that's destiny now, i.e. comes with the territory ?
No decision yet on the trial. It was an experience - so if you'll think the best institutes in NYC are better, well, depends, on what you are looking at / for.
Long day. It's still surreal sometimes.

Gary, I talked with Texas, I am sincerely obliged by both of you. Thank you.

Raj.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Raj,

Just catching up on the posts I missed. Sounds like you have a few decisions to make. The guys are giving you great advice. As for me, I'll be continuing to keep you in my prayers.

Blessings,
Lisa

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Thank you Lisa. I need and will gratefully accept all prayers I am offered.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I have had debated the efficacy of the way trials are conducted, and Wayne, I think has decided on a trial. I myself had vascular invasion, still considering a trial, but there are varying aspects of this. Gerald White (the others can point you to him or find hin by a search) has stated his views on how trials are conducted.

Here are some questions and answers I had with a surgeon - I think he made sense, along with Dr Dutcher here in NYC. I am also told "In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm." - i.e. the situation I find myself in is very rare, and yet, I must deal with it.

(Q1) What is appropriate level of monitoring ? Does it help to monitor and detect earlier ?
(A1) There is no general accepted surveillence and many people have their own ideas. I will leave this up to you and your physician of choice. I would be a little more aggressive because of your age and health (more imaging).

(Q2) By monitoring alone, have I not already missed the bus - should they detect something ?
(A2) In theory, yes, but that is only assuming that we have an effective treatment to kill any residual cancer cells. And we do not have any treatment that has shown a benefit in patients without measureable metastatic disease.

(Q3) I went to a hospital, they presented a double blind clinical trial for Pazopanib or Placebo.
(A3) A clinical trial is a good idea as long as you accept that there is no evidence showing benefit in your case.

(Q4) I could go to another country and get on the drug v/s go on a blind trial, and have them monitor me. Any argument against this ?
(A4) I wouldnt do this personally. It is not as if there is any known agent which can help you but is unavailable. I'm sorry I cannot give you specific answers. Honestly, I would be worried if anyone tries to do this since the studies have not been performed that would allow definitive answers for you.

I am also told that going on the drugs in trial (i.e. Evorolimus, Pazopanib) is not the silver bullet, we expect them to be. There have been several trials since 2005 which they haven't published results - for a reason ?

So why deal with the side-effects ? Why weaken your immune system further ? They tell me altruistic purposes, help man-kind, well, fine, forgive me for saying this, I can only help others if I am around, so first tell me how I can live ? No one can answer this one. So, the emotional altruistic nonsense doesn't fly with me for now.

At a deeply cynical level, I feel, these trials can be rigged, with people with better prognostic indicators receiving the drug and thus skew the results. My faith in the medical community, from what I have seen, is well, doesn't exist (I was going to say shaken).

The debate continues...I think going on the drug outside trial, I don't want to do. So question remains, and answers are welcome, if I haven't already frustrated the others by now...do I do the trial ? Thinking...still thinking..

Wayne, thank you for your replies. I find hope in what you emailed me.

Tex - likewise.

Gary, thanks.

Raj.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Still scratching my head - what the heck hit me ?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Raj, can you re-cap your analysis?
What do you see as the worst-case scenarios if you don't/do enter the trial?
Other than worst case, what other downsides to not entering it?
Is this decision really a unique occasion - a one-off life and death commitment (I seriously doubt it). Have you been put under much pressure by a statement that this is your one and only chance?
How likely do you see it that if you don't go for it it will prove to have been an irremediable and fatal decision?
Fundamentally, I'm asking how palatable is plan B - if you decide not to enter the trial what are the ways you will deal with the various possible courses your life might take. I think reviewing the possible future choices might help take some of the sting out of the feeling that today's decision is SO critical.

ejones_pa's picture
ejones_pa
Posts: 8
Joined: Mar 2012

Female 51, 11cm tumor, open radical nehprectomy right kidney 2/24, pathology reports no nodes involved, microscopic cells found in renal vein, Stage 3 Clear cell.

1st local Oncologist, 3 options, 1)do nothing monitor every 6 months (walk on eggshells), 2) enter the Everest trial (the only one he offered), 3)take Chemo outside of a trial that insurance may or may not cover, may do something or do nothing. How do I fight something that may or not be there?

2nd oncologist U of Penn, offered 2 options. 1)monitor with scans every few months or 2) enter the Pazopanid or the Everest trial, he felt the Pazopanid to be the better option for me. Will be monitored every 3 to 4 weeks, using the local facility and see him after the tests for follow up.

I am feeling the second Dr and the Pazopanid is the right choice for me and the best decision I can make at this time. I am so afraid if I do nothing and something shows up I will feel regret. I seem to find solice in the fact that if I am in a trial and something does show up I will be aware of it sooner and get it treated quicker. This has to be the hardest thing I have ever had to deal with in my life.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good luck. How felicitous for Raj that he can see someone else grappling with precisely the problem he is faced with! Your tumour is miles bigger than his but your situations are otherwise remarkably similar.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Find out what facility is in the MDX-1106 trial in your area. Maybe, if you qualify, you may want to do this. My numbers may not be perfect but, as I understand it, over the last year or so, they haven't filled 80 spots for the trial. Considering 50,000 kidney cancer cases are diagnosed each year, and this MIGHT be the miracle drug, I suggest EVERYONE looks into it. For those that follow these threads regularly,let me say, I am feeling great! Next scan is in mid April. And I am pumped. I am lucky. And I know it........so far.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Fox, from what I see, A Phase 1b Study of MDX-1106 in Subjects With Advanced or Recurrent Malignancies, it is not available as adjuvant therapy.

Texas- Yes, there may be trials later, but adjuvant has to be started within 84 days (some other trial may say XyZ days), but there will be a limit. I just want to ensure you knew this constraint when you made your suggestion.

Thanks.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Was the rationale for this explained fully? If so, do you find the explanation persuasive? I wonder whether there is a reason which will stand in the future or whether it is an artefact of the present model and our current state of knowledge. Have you signed up for it now?

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

The rationale was not explained, it's the "Terms of the protocol", and I have seen a view of these "agreements". Any "adjuvant" therapy has to be started within a certain time. The reason may be the theoretical speculation as explained in that book I read, but that is speculation. Regardless, that is the reality of adjuvant therpies.
Not yet signed up, sitting on it.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A minor technical hitch prevented my communicating the info. below to Raj by CSN email and it since occurred to me that the content might interest others here too, as well as, I hope, Raj.

Someone on the KIDNEY-ONC forum was contemplating the Votrient (pazopanib) trial and wrote this on 23 Dec 2011:

"Hi all,
> I'd like to hear about side effects of pazopanib. Not just the long list
> that comes with the drug, but what someone on the list has actually
> experienced. The oncologist tells you all the bad stuff and it's pretty
> scary. I have the opportunity to get into a study for Stage III RCC. I've
> had my right radical nephrectomy and have no known cancer today (as of
> 10/20/11). The study is to see if pazopanib prevents recurrence.
>
> It's hard to weigh the risks of recurrence (35-50% according to the
> oncologist) against the chances of severe side effects (like death!). On
> top of that the whole point of the study is that nothing has yet been found
> to prevent recurrence and they're trying this drug now.
> Thanks for the list, it's a real help."

He received the following helpful answer:

"Do not hesitate at all. I have been on Pazopanib for the last 4+ months.
Apart from Diarrhea I have no other issues whatsoever. I had a nightmare of
a time on Axitinib. Compared to the adverse effects of the other TKIs,
Pazopanib is a walk in the park.

So chin up man, fear not, take the pazopanib and get well soon."

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I cannot tell you what you should do, and I know you didn't ask.
That said, be wary of the need to do "something", it feels like our eyes are closed, and something might pass us by, so we should first grab it, then open our eyes to see what we grabbed. Something might show up if you receive placebo, or even the drug, you run the risk of side effects, weakening your organs, risk of resistance, and cross-resistance. Risks are either way, and Tex tells me there are many better drugs coming out of the pipeline.
Not an easy decision by any means, and no telling how this all will turn out. This cannot be solved analytically, or by thinking. Get some guidance, prayer etc. seems to help. Yet, no guarantees, but you will feel better.

rccstage3
Posts: 1
Joined: Jul 2012

Hi ejones_pa,

Like yourself I was diagnose with rcc stage 3 last nov of 2011. My tumor is 6cm with renal vein, & vena cava involvement. Did radical nehprectomy.They open my Vena cava & got rid of the blood clot.They did the pathology & No lymphnodes were affected. I had my CT scan this past March & no signs of recurrence. I'm a 42 yr old male. I couldn't beleive I got diagnose with this at my age.
I went to UCSF cancer center(San Francisco,ca) & had a specialist/uroligist did the operation with a team of his other doctors..I'm just on a watch full eye right now according to him. He didn't suggest any type of other options.I feel confident with his suggestion because hes a specialist. I was actually referred to him by another uroligist who I first initially saw. He felt that I needed a specialist to handle my type of situation because it involve the vena cava. I don't know if medication is needed if there is no sign of possible tumors. You & I are both on a trial period if something shows up we will get the proper treatment right away. But I do feel what your saying that even if there is no signs doing something extra will enhance the chances of no recurrance. But I don't know. I'm just trusting what my specialist said.Let me know your progress.Hopefully we will beat this thing.

Phil

angec's picture
angec
Posts: 614
Joined: Mar 2012

Hi there, i have been reading older posts here. My mom 9 had her right kidney removed almost two weeks ago. She had almost 7cm mass (which showed 4.3 on scan). Stage 3, one node and renal vein margin. Is Dr. Dutcher in Sloan Kettering in NYC? I am supposed to make an appt. to take her there any time now. Just waiting for her to heal a bit to make the trip, it is a bit of a drive by car and she still has some pain. Thanks for any info you can give on him? In the meantime you can check out this doctor who uses homeopathy in advanced form. My mom has been on it since we found out about her tumor in February. He says he has rcc survivors of all stages and no side affects. He also says he can prevent the spread to other areas. You can write to him and ask questions yourself. I would be interested in the answers he would give you. I have been pretty happy with him for 6 years now and he has helped us alot in many way, including my dads prostrate cancer which he cured. Here is his site. www.drpbanerji.com.. If you write to him tell him you met me on the kidney boards.. Angela. He does this work through telemedicine..you dont' even leave your house. He is a great doctor. I wish the best for you and my mom and all the friends i have met on here. Did you do the trial?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Angela, Dr. Dutcher is very highly spoken of everywhere. Apart from here, if you read the appraisals of her on KIDNEY-ONC you'll see what I mean. There is a useful lengthy video of her in action in her office to be seen here:

http://www.columbusandthevalley.com/voiceofthevalley/?p=1039

I suggest you also ask Raj ("livealive" here - the posting above yours, since he has recently consulted her. Jerry White also knows her well and, I believe, has a high regard for her. If you get a chance to view the video, I'd like to hear whether you agree she would be good for your Mom.

angec's picture
angec
Posts: 614
Joined: Mar 2012

Thanks TW i will check it out asap and let you know. I hope you are doing well. Any news yet on your surgery? :)

angec's picture
angec
Posts: 614
Joined: Mar 2012

She seems like she is very knowledgeable and i like her bedside manner. I am just thinking all of this stuff will be too harsh for mom. I think she is in Roosevelt Hospital? We were thinking Sloan Kettering. Very informative.. thanks for the link ;)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

At least it gives you another option of known quality who puts the patient before everything else. Good luck, however you choose to go. The MAARS CD will be very calming. Keep us posted. (By the way, I won't get much feedback on my situation until a clinic in about 5/6 weeks time but I'm told the op went smoothly this time. Thanks for asking.)

angec's picture
angec
Posts: 614
Joined: Mar 2012

Yes, it is good to see what is available. Mom said she did not want to listen to anything. She is prepared to just pull the covers over her face and even the slightest thing wrong like a sneeze gets her nervous. She is so nervous i feel bad for her and know how hard it must be. She had breast cancer aout 18 years ago and was nervous with that. I totally understand. However, i am going to get the books and cd for myself and i can relate what i hear and read in my own way. 5/6 weeks is a long time to wait TW.. but I am hoping it is all good! Did you check out that website? I was wanting to hear your thoughts on it. You are so intelligent. www.drpbanerji.com.... Have a good day!! Keep smiling, the body will feel better!

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