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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.

angec's picture
angec
Posts: 664
Joined: Mar 2012

TW.. do you have a personal email? I wanted to forward you something from the dr. i have been speaking about. If not i understand. You can send it to me at hnachan@aol.com. I think he may be able to help alot of others on this board. Especially those who are stage one and thinking about trials with bad side affects.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Please email me at hnachan@aol.com.. I have something for you I am totally sure of! Angela

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

Angela, in order that people don't have to reveal their email addresses here, ACS makes a special facility available, which you can access by clicking on "CSN email" which you'll find in the brown box on the left of the window, under the heading CSN. Do try that. By the way, I've looked at the homeopathy site you mentioned quite thoroughly in the past and have it bookmarked. I look forward to hearing from you.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Ok. I see the email sight but don't know how to send mail to you... But if you have seen the site then that is good. I was going to forward the email where he says that most of his patients live many years longer and have a better life with less pain and suffering just taking his meds. I felt much better to hear that. I am hoping he can help someone else because this disease is fierce. Texas maybe you should write to him as well. It wouldn't hurt to see what he can offer you. He is very, very low cost as well so no problems there. A few hundred dollars i pay every six months and i have him at my fingertips whenever i have a new issue come or and i usually get a response within 24 hours or more immediate if it is an emergency. Just want to let you know and keep the hope alive. Thanks for all of your help. Let's see if i figure out this email thingy now.. lol By the way, i hope your mother in law is doing well.

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