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Good morning

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Good morning everyone. I hope you all are doing fine. I have been having up days and down days. I go to see my oncologist tomorrow and I am sure she is going to bring up the Everolimus trial to me again. At the risk of repeating myself (guessing I just need a little more reassurance) My dx was stage 2 grade 1 clear cell contained in the kidney which was removed. I have decided not to participate in the trial. My tumor was 7.5cm. I have read of many people, Ice, included who have had small tumors and done so well. I am so happy for all of you, but is a 7.5cm tumor a lot worse as far as survival or cure rate? Im sorry, I was doing so well but now I am on that rolleroaster again. I know it will pass. Thats what I love about this site, you all listen when one of us is feeling a little insecure. Thank you

Judy

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

Hi Judy,

As I understand it staging is determined by size and stage 2 starts at 7.0cm so you were just there and the rest of your pathology was very good. Your risk of recurrence is a tiny bit higher than if you were stage 1 and only you can determine if that will be worrisome enough to keep you from enjoying an otherwise "normal" life. If it is then my question would be why a trial where you might get the placebo? On the other hand, if you can put it out of you mind and stay vigilant with your follow ups you can deal with it "IF" it ever returns.

Just my $0.02,

Gary

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

Judy, I'll put my two cents on Gary's number also. Your prognosis, based on the stage and grade you have, is too good to justify going into that trial, in my opinion. As Gary says, stay vigilant and expect to be fine. If anything untoward were to show up, then that would be the time for treatment, but not now. (It occurs to me that I'm in a fairly similar situation in the sense that I'm not on any treatment at present and none is recommended unless and until the necessity for it arises. However, in my case it's much more likely, at stage 4 and grade 4 etc but I'm happy not to do anything before there's a clear indication that it's called for.)

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

Now if somebody would just offer a penny for our thoughts we'd have a nickle!

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Ok.. I will offer a penny for your thoughts :-) not sure what a nickle will buy these days but you have it now. lol.. Thank you both. This site is sooooooo fortunate to have you both here to help the rest of us.

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

Sunlover,

First I want to apologize as I see my last post upset you and made you question your decision. That was not my intention at all. I was just expressing my opinion on my decision on what I thought was right for me. Every situation is different and only you know what is best for you. The most important thing for all of us is to remain positive no matter what our odds are. I believe the power of the mind is more effective than any drug.

Health and happiness to all,

Wayne

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

No need to apologize cww. It was me.. I was insecure sometimes about my decision but I am not anymore. I was sorry I posted that post right after I hit post. (now thats a lot of "posts") haha.. I dont think I worded it very well and I didnt want you to think you were to blame for me questioning my decision. I believe we both made the right choices for each other. I hope for the best for all of us.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

i am not sure if i am a stage four or not,i have asked but no real clear answer,have been told my situation could be unilateral but then again i have not gotten that in writing.I am like you Texas ,i am just going on with my life and have decided to adopt a wait and see attitude,the downside is my CT scan schedulle has been changed from 6 months up to every 3 months along with the lab work and doctor visits which does annoy me ,but this is the hand that has been dealt to me so i move forward and remain thankfull.As for you Sunlover you mention the gade of your cancer as being a grade 1 ,for me that is as good as it gets,i know maybe some people might not agree with me but i would rather be dxed with a slightly larger tumor with a low grade tumor verses a smaller tumor but with a higher grade cells.Good fortune Sunlover and stay strong.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Thank you. it must be hard to be in the dark as you are. I love your positive attitude. I am going to take your lead and strife to be as strong and positive as you and everyone eles here. And yes I was worried a little about the size of my tumor but I am so very thankful for the low grade .. I was also blessed to have found it as early as I did. and now I will repeat to some good advice someone gave me. "Good fortune to you, Limelife50, and stay strong" :-)

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Judy,
We posted back and forth before about this and I mentioned I turned down the offer to join this trial. I'm one of those Limelife talks about with a low stage but high grade (Stage 1, Grade 4) but I made my decision not to participate and I'm fine with it. I didn't like a couple of things about the trial and the placebo was the first red flag. I'm working on staying positive.

I love music and the title track, Wrecking Ball, from Bruce Springsteen's new album is my anti-cancer anthem. In broad terms it's about tearing down Giants stadium, but it's also about growing older, resilience and a fighting spirit. It motivates the heck out of me!

Give it a listen on youtube:
http://www.youtube.com/watch?v=8DNwaojAJ18

Take care, David

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

let's see. you give a penny for our thoughts. But we give our two cents worth.?????????Anyway, I did the wait and see thing at first. Glad I did. You've got time to research other clinical trials and when and if it's time, you'll have a more informed choice.

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

Hey, we're up to 7 cents, 3 more and we'll have a dime...this is better than the stock market!

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