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Opdivo

Sadiestorm's picture
Sadiestorm
Posts: 1
Joined: Sep 2017

I've been opdivo for about a month and a half. Just wondering if anyone else is. I have stage 4 rcc. I'm wondering what side effects people are having and what their experience is. Also is it working for you? 

penitent
Posts: 79
Joined: Jun 2016

My SIL has stage IV, grade 4 SRCC and has been on Opdivo for probably 6 months or more.  He basically reports extreme fatigue and now, most recently elevetaged liver enzymes which can be a possible SE of Opdivo (hepatitis).

BUT, that aside, it has worked well and kept tumors at bay along with some SBRT.

Keep it up!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Sadiestorm, I've been on Opdivo for 8 months after being on Votrient for ~3 years. Just got my PET/CT scan results today. Not NED, but mostly good: all mets have reduced with the exception of two bone lesions.

My most notable side effect has been skin rashs. I switched to off-the-shelf moisturing, sensitive skin soaps to abate that problem.

So far, it works for me!

donna_lee's picture
donna_lee
Posts: 1018
Joined: Feb 2009

She had most of the truly bad SE after about a year plus.  Fatigue, unable to eat or have a desire to eat and the worst was the problems with vision.  She saw an Opthalmologist who looked up all the side effects and determined that they were caused by the cancer drug.  She's been off it for about 4 months and is doing OK, with all the SE going away.

donna_lee

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Sadiestorm,

There is a fair bit of information on Opdivo efficacy and side effects on this discussion baord - read the threads on Checkmate 214 and BMS for a start.

My own expereince has been nothing short of miraculous (so far).

Best of luck,

angec's picture
angec
Posts: 924
Joined: Mar 2012

I  have seen people on it with very little or no side affects.I hear that the first scans after you start can show things lighting up but is only a reaction/ inflammation from the drug. Not an indication of progression.

Rhominator, will they radiate the bones?  All the best!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Yep. Ready for the next round.

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

 

I also have stage 4 RCC diagnosed at the end of 2016.  It was several months from diagnosis before going on meds (I had surgeries etc.), but when I did it was Votrient.  My doc told me that was the medication of first choice so I guess I am just curious why your doctor put you on Opdivo?

 

I have had one scan since starting the regimen, and Votrient seems to be working.

 

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

read back to when i joined this forum. I posted a pretty detailed history of being on opdivo/nivo.

larry, nivo vs votrient are 2 different drug mechanisms. nivo uses the immune system. Votrient is a blood vessel growth inhibitor. There are indications for each. It's good to know about the treatments available so you can choose them with your doctor. This is important because one is a potential cure, and the other is just a tumor suppressor.

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

This is not one of the treatments recommended  to me as far as I remember.  The Votrient seems to be working thus far, but the fatigue is severe at times (like today).  My next meeting with the doc is in October and will ask him.  I will look into this myself as well.  The only other treatment was Interluekin which is pretty severe with limited success.

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Larry,

I was given Nivo (in combination with Ipilumumab for the first three months) as part of a Stage 3 open label trial called Checckmate 214.  This compared Nivo/Ipi against Sunitinib, also an angiosupressor like Voltrient, for clear-cell mRCC.  The trial has been completed and was reported recently at European Society for Medical Oncology (ESMO) - Google that and Checkmate and read the presentation.

I understand from the people running the trial at my local hospital that the Nivo worked better for more people than the Sunitinib, and the overall report confirms this especially for people with well-advanced disease, but of-course everyone is different. 

The angio-inhibitors can limit tumour growth but cancer is smart and often mutates to eventually win the day.  The Nivo option enhances your own immune response to recognise and kill cancer cells, and for me that has apparently been succesful as no tumours now show on my scans. 

I too suggest you discuss this potentially alternative treatment with your oncologist.

Best of luck

Qt34167's picture
Qt34167
Posts: 41
Joined: Nov 2015

Just finished my third treatment.  SE are minimal compared to Sutent I was on.  I do have liver problems thoughand currently have a liver drain which is draining lots of bile.  This was a problem prior to Opdivo.  Thhey tell me it doesn't effect the liver bt the brochure says different.

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