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survey of nivolumab and other pd-1/pd-L1 drug trialists

rook
Posts: 7
Joined: Feb 2014

Hi,

I am a caregiver/advocate for my mother who has stage IV, grade IV, clear cell renal cell carcinoma with rhabdoid features and necrosis. Post nephrectomy she was given sunitinib which resulted in stable disease for several months. The mets are confined to her lungs and are growing very rapidly. She was recently accepted into a clinical trial and will receive stand-alone nivolumab.

Using the search function, I found that many of you have participated in pd-1/pd-L1 trials. Would you mind sharing the grade and histological features of your tumor, and how you responded? There is some evidence suggesting that aggressive cancer cells are more likely to express PD-L1, thus increasing the chance of a response to PD-1/PD-L1 drugs. It would be interesting to see if such a pattern holds true to the small cohort of this forum. Perhaps it can give those with poor prognosis some hope.

Rook

 

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

June 2009 I was given 6-9 months to live. Was in original Anti PD-1 trials ( MDX 1106   aka Nivolumab) in 2010...my trial was 30 months. I have been NED for nearly 4 years ( March 26) will be 4 years. If you can get into the trial...run don't walk!!

rook
Posts: 7
Joined: Feb 2014

What dose did they give you?

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

rook, I'd have to go look up my tumor status because those details are no longer important to me. I was a stage 3 at surgery but I think they were wrong because post op I went to Dana Farber and they said stage 4. For a better picture, it can be said that in a few months I had enough tumors to play both sides of the ball in the Superbowl or I could have filled the starting line ups for the NCAA final four with some second stringers. The nivolumab wiped out 90% of them without side effects in 18 months. Unfortunately I had some growth and was bumped from the trial. I was getting 10mg/kg of body weight. It was so easy. Now IL-2, that is a real mans drug. Too bad a real man didn't take it for me.

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

I believe I was on 1 mg/kg. I was patient number 4 in the original melanoma trials and did it for 24 weeks (every other week) and then the booster phas which was 1 infusion every 3 months for 2 years. I also did 72 peptide injections. ( 6 every other week for 24 weeks)

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

I was diagnosed with stage IV in January 2013. I don't recall staging but it was a 17 cm clear cell tumor in my right kidney And right adrenal. 3 mets to lungs and a 3.8 cm tumor in my left adrenal. Not a good place to start.

See my bio, but basics look like this:

started Nivolumab-Sutent in feb 2012.

5mg/kg nivo and 50 mg Sutent, 28 on 14 off.

6week scan 12% swell of adrenal tumor with signs if necrosis, stable lung mets

12 week scan- 30% shrink of adrenal 1 met gone from lung

18 weeks additional 30% lung meta to a shadow

24 weeks adrenal down to 5mm (I think) lung mets gone

36 weeks adrenal called scar tissue or swollen adrenal

48 weeks, Jan 2, 2014 No Evidence of Disease from CT scan

I am continuing only Nivolumab infusions every 3 weeks. Sutent was dropped in October. Virtually no side effects. At this point, I am told we are trying to find the proper maintenance dosing. I have not idea how long infusions will last.

I know two others in the trial with me. One very similar results, one with continued shrinkage since starting, but his progress is slower. He is not a complete response YET. 

 

it it has given me new life!!!

one putt
Posts: 72
Joined: Sep 2012

I was diagnosed Oct. 14 2011 stage 4 grade 4 with some sarcomatoid features. Mets to lungs, left hip, right shoulder, and  right paratracheal lymph node. Started phase 1 nivolumab/ votrient trial May, 2012. To date I have 57% reduction in my tumor burden. My dosage is 2mg/ kg  of weight and 800 mg of votrient/ day. Minimal, manageable side effects which I believe are votrient related. I also get a shot of Xgeva every 28 days for bone strength. I am the longest responder in my arm of the trial at Johns Hopkins. My doctor has told me that of the patients that respond to nivolumab 20% get reduction of over 30% and that group has received long-term benefit from the drug. I received almost immediate relief from the drug.

  P.S. Darron, how did your appointment go with Dr. Hammers ? Sorry we couldn't meet up on the 20th, but that would have made a long day even longer.

one putt
Posts: 72
Joined: Sep 2012

Darron I meant that P.S. for dhs1963. Sorry.

sblairc's picture
sblairc
Posts: 92
Joined: Feb 2014

Wonderful to hear these stories, I am encouraged for the day that newer drugs come FDA approved and many lives will be prolonged, complete remission is achieved. I love reading about all of the journeys, and hope that if my husband wasn't cured by surgery at least his mets hold off until more options are available for non-clear cell. As my husband likes to say "Life your life and don't let your mind get caught up in the weeds of "what if's"

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