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Fox

Srashedb
Posts: 482
Joined: Dec 2013

i check every day for any updates on Foxy; his last posts made clear how difficult it wa to post and sometime read.

Has anyone had contact with him that they can share? 

Foxy means the world to me

Sarah

APny's picture
APny
Posts: 1886
Joined: Mar 2014

Thinking of you Foxy!

ZVM's picture
ZVM
Posts: 21
Joined: Mar 2017

You are a rock on this board...thinking of you, sending positive vibes.  

lobbyist0724's picture
lobbyist0724
Posts: 372
Joined: Sep 2016

At least I see him logging in everyday!

Bellafelice
Posts: 57
Joined: Sep 2008

Fox is truly the neatest most concerned compassionate person ever!! I hope you see this Fox and realize how much everyone thinks of you!!!

stub1969's picture
stub1969
Posts: 756
Joined: Jul 2016

Fox was online yesterday.  Abunai last checked in on Sunday.  I hope he is doing well.

Stub

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

Sending you positive vibes fox

Allochka's picture
Allochka
Posts: 838
Joined: Nov 2014

Fox and Abunai, thinking of you!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Thanks everyone. We will see how time treats me. I still have much work ahead so don't hold  your breath. I am in a tough battle and I'm currently on the wrong side.

Stay well everyone

FLY

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Good to see you still in here still kicking around  and  kicking cancer's butt. I've been out touch for a while. I'll try to stay in touch more often.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 452
Joined: Jul 2014

Hang in there and keep fighting the fight. 

angec's picture
angec
Posts: 923
Joined: Mar 2012

ElF!  Glad to see you are fighting through this. You are one tough dude!  Love you lots, keep on going!! Hugs!  Ange

Allochka's picture
Allochka
Posts: 838
Joined: Nov 2014

Fox, thank you for taking strength and time to write to us. We love you too and believe in you!

Red Corvette
Posts: 105
Joined: Jan 2016

Hello Everyone,

While I usually hang out with the wonderful warrior ladies on the uterine cancer board because of Mrs. Red‘s prior serous cancer bout (she’s NED now thank the Lord), I also look at this board a lot too because my sister bravely fought renal cell cancer for 10 years until the end. I saw a new treatment for both RNC and uterine carcinoma cancer using Keytruda and Lenvima in combination. Here’s the link. Hope this is of assistance to the brave RNC warriors here. The link to this study is below.

Red

https://www.curetoday.com/articles/drug-duo-granted-breakthrough-status-to-treat-endometrial-cancer

PS Fox is amazing and truly a wonderful inspiration.

TLAlways's picture
TLAlways
Posts: 15
Joined: Feb 2015

Hi Fox!  Thinking about you everyday stay strong.  Your mind and body will lead the way.

Skagway Jack's picture
Skagway Jack
Posts: 220
Joined: Oct 2013

Fox,  Hang in there and keep setting the bar a little higher.

 

Jack

Jan4you's picture
Jan4you
Posts: 1305
Joined: Oct 2013

LOVE LOVE LOVE ME SOME FOXY!!

I am with you in spirit buddy.. always!

Healing hugs, 

Jan

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

Always good you see your mug on the board, Fox!

JoeyZ's picture
JoeyZ
Posts: 190
Joined: Mar 2018

One day at a time - that's all any of us have, anyway. Always thinking of you.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

And to see you FLY!

Todd

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

Always on my mind. Love you!

sedonaman
Posts: 21
Joined: Jul 2018

I was recently diagnosed with rcc and had my kidney removed a month ago. Pathology report stated it as stage 3 (no Lymph) grade 3 which I was told meant it was aggressive. Although I have been sent from my urologist to a oncologist, I still feel confused. The urologist said there was new pill out that was being used for preventative for grade 3 rcc but the oncologist did not seem to push it. Has anyone heard of it or have any feed back. I am one that likes to know what is going on and I was just told I had 50% chance of it returning?? Anyone have advice. I am new to all of this and I do not know what Uncle ned means?

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

NED = "No Evidence of Disease". 

 

I had to learn that here, recently too! 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

Bit subjective.  Lots of new treatments for metastatic RCC in recent years.  Check our immunotherapy for a start.

And educate your medico's.  This is important for you.

Best Wishes

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I actually didn't realize they had approved Sutent to be used as an adjuvant therapy (taking drugs to prevent cancer recurrence instead of just taking drugs to treat existing cancer) until I went to google it just now. I also had Stage 3 Grade 3 about 6 years ago and had a nephrectomy. At that time they were doing clinical studies with Votrient and Everolimus (as I remember). I actually did the study with Everolimus for 1 year. However, my cancer returned in my adrenal gland 2 years after my first tumor was removed and they unblinded me from the study and I found out I had been on the placebo arm.

As far as I know only Sutent has been approved for adjuvant therapy. The FDA report I read said that after five years following something like 615 patients, 58% of the placebo arm had their cancer return while 51% of the Sutent arm had their cancer return. I wouldn't call that stellar performance (check with your oncologist, but maybe that's why he/she wasn't pushing it). The drug is a hard drug to be on. It has a lot of side effects and can damage your liver. If you decide you want to look into it, you might want to really look into the side effects of Sutent.

I was told I had somewhere between a 30-50% chance of my cancer returning. It did return.

If it were me, I'd go for close surveillance instead of taking a drug like Sutent with those kinds of results. After my cancer returned I was offered another drug study to take Votrient as adjuvant therapy. In that study they were looking at Stage 4 RCC patients that were NED after surgery. I declined to do another study. I really didn't want to take Votrient as a trial when I had no cancer.

One of my fears about taking these drugs as adjuvant therapy, is, we know that these drugs most of the time lose their efficacy and have to be replaced with another drug. I don't think they know long term how taking the drug before you even have cancer will affect how long they will work if your cancer returns while you are on the drug. It might be that you would lose the ability to use that drug right away (because it'd obviously be not working if you got cancer while on it).

You should really discuss all of this with your oncologist. Ask why they don't recommend the adjuvant therapy use of Sutent for you.

I would push for close surveillance and I would keep it going longer than what they recommend. For me it was CT of chest/abdomen/pelvis (with contrast if possible) every 3 months the first year, every six months the second year forward. However, when my cancer returned and was removed my oncologist felt I needed to be on a 3 month follow-up indefinitely.

Make a list of your questions and take them to an appointment and ask your oncologist all of your questions. You deserve full answers to all of your questions and you deserve to have all of this explained. You may have a better idea of what to ask after reading and posting here for awhile. A list is really important so you don't forget anything. Take someone with you to listen to the answers. That helps too.

Best wishes,

Todd

 

sedonaman
Posts: 21
Joined: Jul 2018

Thank you Todd for all your great information. All of this can be so confusing and I appreciate all the knowlege I can get. I will take your advice and ask questions! If you dont mind be asking, how long was it when you cancer came back and where was it. This is a fear of mine but I understand what you are stating about being on meds for preventative and not being able to use it later if comes back. Thanks again for listening to me and responding with great ideas and thoughts.

Deanie0916
Posts: 234
Joined: Nov 2016

Thanks. You are in my thoughts and prayers. Thanks for sharing your experience, strength and compassion with all of us. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thinking about you and sending you BIG HUGS!

 

XOXOXO

Jojo

Tapman63's picture
Tapman63
Posts: 132
Joined: Dec 2017

We need your wisdom around this board for a long time to come - relax and get to feeling better!

Jim

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Fox!!! We are all with you. So sorry for your current situation. You are an amazing man. Don't ever forget that.

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

just got back to civilization and wanted to send you a big hug. Always with you in my mind and my heart.  Sending loving thoughts your way my wonderful friend.

JoeyZ's picture
JoeyZ
Posts: 190
Joined: Mar 2018

Still thinking of you, Fox. Every day. Wishing you nothing but the best.

Jan4you's picture
Jan4you
Posts: 1305
Joined: Oct 2013

No matter what you are going through, Foxy, know that WE ALL LOVE YOU!

 

Sending you all that you need on a spiritual level. 

Sending you HOPE and HEALING in all the ways you need the most!

You are remembered... and NEVER, EVER FORGOTTEN, see? 

LuvUsoMuch!

Jan

Wehavenotimeatall
Posts: 472
Joined: Aug 2017

I am  not a  fan of people knocking on our door to ask you how you are

but i think of you and pray for you every day

Sending strength and much love from across the big pond

Annie

i love you Big Guy... changed me a lot

 

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