CSN Login
Members Online: 9

You are here

Stage IV to N.E.D.

Posts: 55
Joined: Jun 2011

Hi Everyone.

It's been quite a while since I posted, but it's been a rough couple of months. Here's what happened:

May 2011: Nephrectomy. Big, 8 or 9 cm tumor on right kidney. Also, some of my liver is gone in that the tumor had grown into the that organ. But the surgeon was confident that he got it all, so told me just to continue with the follow up scans.

September 2011: 2nd scan showed multiple "lesions" on my liver. The biopsy confirmed that it was RCC. I was referred to an oncologist, and started the fun drug, Sutent. 4 weeks on, 2 off.

January 2012: After 2 rounds of Sutent, I had a CAT scan. The scan showed that ALL LIVER TUMORS ARE GONE!! I am officially NED after 2 rounds of Sutent. The doctor wants me to continue for one more round though, just to make sure, I guess.

Obviously, I am over the moon about this. Though I do realize that this sneaky disease can rear its ugly head at any time, and most likely will. The doctor told me that it's very rare that the tumors disappear like mine did. Less than 5% he said. So, I have to wonder, why did it happen??? What made this happen??

The answer I keep coming back to is diet. The last thing I want to do is sound preachy here, but if it helps anyone, it's worth that risk.

After the liver news, I went completely to a plant-based diet. No meat, dairy, processed foods, and very little oils and sugar. Lots and lots of fruits and veggies, whole grains, some nuts, and lots of water.

It just makes sense that what you put into your body effects what goes on inside there, you know?

Anyways, I hope this helps someone. Even though I don't post often here, I come here often for information and not to feel so damned alone.

Thanks, and best wishes to everyone here....

Jennifer, Age 45, mother of three : )

foxhd's picture
Posts: 3183
Joined: Oct 2011

Wow!! Thats FANTASTIC!!! Another thread is discussing diet and I admit to not being good about it. So happy for you! And thanks for kicking me in the *** to watch my diet more carefully.........Boy, that's just awesome! love hearing good news. Keep taking care of yourself.

myboys2's picture
Posts: 50
Joined: Nov 2011

We are almost to NED. We did the diet change immediately. Cody and I believe that the diet augmented his response as well. He is almost to Ned. 1 of 3 liver tumors is gone and the other 2 are less conspicuous as of 1/6. He is continuing the diet at college.

So happy for you waiting for NED. The diet is a lifelong change the entire family is supporting. I lost 18 pounds!!

Gail mother of Cody 21 T3aNxM1
diagnosis 8/10/11 unclassified RCC T1B N0 M1 TFE3 negative
8/16 checked into NYU as emergency surgeon concerned head skull tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Xgeva injection. No lymph,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)
12/31 completed high dose radiation of skull mets
1/10 rescans stability and continued remission; no new evidence of new disease since initial diagnosis first week of August 2011
1/13 Dr. Dutcher confirmed what we thought to be true on 1/10; remaining on Sutent 50 mg 2/1 week cycle
1/14 We have stable disease with less conspicuous liver tumors 1 gone 2 shrinking largest is 1.1 cm. This represents improving metastatic disease. Don’t know why they just don’t say they are shrinking and necrosis is setting in but Dr. Dutcher does not. We are almost to NED and Sutent seems to be working marvelously. Hopefully we will get a long run from it. Cody will be returning to college Monday 1/16 and back to his life.
When he returns in May we have to consider HDIL2 or not, wait for PD1 which has far less side affects and rave response rate, or just remain stable w remission on Sutent.
1/22 Cody called to say last skull bump has shrunk by more then half which was to be surgically removed in May!!

live life 4 u
Posts: 25
Joined: Dec 2011

Jennifer I agree with you 100% about diet.My diet before rcc was really bad.Blessings 2 u and your family on the Awesome news!

Nicole,Age 32 mother of 4!

Posts: 55
Joined: Jun 2011

I really can't say enough about how important I think diet can be. I would encourage everyone on this board to watch "Fork Over Knives", watch a few videos from www.nutritionfacts.org and just try the plant-based diet for a while. I truly believe it can make a difference for anyone fighting cancer, heart disease or so many other illnesses.

Sorry if that sounds preachy and/or obnoxious. But I really, really think it can help!!!

Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

I hope NanaLou reads this soon and sees that both Jennifer and Cody are doing well on Sutent and also taking care with what they eat. The diet articles sound worth reading - thanks for the links folks.

Posts: 71
Joined: Oct 2011

So glad to hear this and thanks for sharing about the diet. I am going to do my best to eat healthy. I bought some veggies today. I don't know if I can do it everyday but I am giving it a try. I started my Sutent today. So I got good news there was no cancer in my brain.I need to learn some good ways to cook veggies that I will eat and my family too.

Subscribe to Comments for "Stage IV to N.E.D."