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Trail closing -63 months NED

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

I dont post much anymore, but wanted to share this one, and actually get some feedback. I have been in a Sutent-Nivolumab trial since Feb 2013, I was stage IV with lung spots and an adrenal tumor. I have been NED since August 2014. I have continued to take Nivolumab infusions and 37.5 mg of sutent for maintenance since 2014. I had another clear scan yesterday, but after the scan, I was informed that I am the only person still taking the combination of Sutent and Nivo. They are closing the trial, no more data will be gained from just me in this arm of the trial. BMS has offered to continue to supply the drug if I want to continue taking it, but I was basically told there is not addirional Benefit from continuing to take the drugs. Immunotherapy data is showing that benefits don't increase after 2 years.

i am really excited to stop taking sutent, but a little scared that the drugs are keeping my cancer away and the combo hasn't actually killed it. Anyone out there that has had a complete response from any immunotherapy? I would love to hear any stories to ease my mind about  stopping my treatment. April and Chuck, if you still read the site, send me a note. I value your thoughts and Was curious if you have had a similar conversation.

Happy Thanksgiving to all!

John7022019's picture
John7022019
Posts: 4
Joined: Nov 2019

Darron, 63 months NED is great! Could you let me if you had removed your kidney before or during the treatment ? Thanks a lot

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

My initial diagnosis uncovered a 17 cm tumor that had overtaken my right kidney. I had a 3.4 cm tumor in my remaining left adrenal gland and had multiple lung spots. 50 mg Sutent and Nivolumab every three weeks had me clear if cancer in abiut 10 months. At that time, I stopped Sutent and continued with Nivolumab only. 4 months after that, I had a recurrece with a lung spot and re-started sutent at 37.5 mg. The spot disappeared in about 4 months. 
data is now showing that immunotherapy (at least Nivolumab) should be taken for 2 years. Seems I stopped treatment prematurely. Thought now is that there is no benefit to continue treatments, only harming my liver and heart. My last Nivo infusion is scheduled for 12/19. After tha, time will tell us more.

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Kidney was removed before treatment Started

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Wow! Great results. I hope someone can give you some good info :)

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

It’s fantastic, sim0ly fantastic! If I’m not mistaken, Manufred was taken off the drugs a while ago and is NED, hopefully he will respond

wheresgrant
Posts: 8
Joined: Nov 2019

Darron... I think it's wonderful news for you on being NED and I understand your apprehension for coming off the combo. I've been recently diagnosed Stage IV colorectal with Mets to my para arotic lymph nodes (no mets to liver or lungs yet) but I started niviolaumb about 6 weeks after surgery. I had my first treatment and my oncologist is very confident this treatment will work for my diagnosis. From what I understand the treatment is two years and there is no greater benefit beyond that. I have to say you've maintained treatment longer than anyone I know personally. You immune system must be bionic. Did you have side effects from the Nivio alone?

 

My fingers are crossed for you. Almost 7 years after S-IV is amazing and I have faith this new immuno therapy is a miracle drug. Were you diagnosed MSI or MSS? Curious as it seems for most people on Nivo it's MSI patients. 

 

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

I don't know what MSI and MSS Means. quixk read tells me it is tumor makeup. I don't know and Characterization specifics to the tumor, it has been a long time since I read those reports.

the Nivo itself hasn't given me any trouble. Sutent cycles give me the standard list of things, taste off, stomach issues, yellow skin. I am taking thyroid meds, likely Nivo killed most of my thyroid.

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

You've had a nice, long run with this trial! That is fantastic and what a great success story. Who knows what will happen next, but I sure do hope you continue to be NED for the long haul.

I was on Cabo for 15 months, then went off it for 4 months, then had a CT Scan. Progression!! So back on it again. But I also have this aggressive Papillary Type II cancer, so who knows. Can't really compare our situations, but yours is wonderful with this many years. Just go with it and keep a close eye on everything with regular scans, as I'm sure you will!! Wishing you all the very best and I hope you'll keep us posted.

Stories like yours help keep us motivated and encouraged, so thank you for stopping by and sharing. Happy Holidays and all the best to you and yours for 2020!

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