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Well ! Not what we expected...

pamstayner's picture
Posts: 111
Joined: Apr 2014

Met my new Oncologist... Dr. Primo "Lucky" Lara.... now the Acting Director Comprehensive Cancer Center here at UC Davis in Sacramento.  Seems to be a busy man around here.... Since all my scans since Feb. 2014  have shown stable or small growth... and the Opvido scans since starting Opvido this past Feb. (have had 21 infusions) have been boringly stable.... and I feel SO GOOD, with absolutely no side effects. I have to say, the scans were done last week, and I never once thought about results ... at all... so seeing Dr. Lara was just going to be a routine meet and greet.  I have had three lung mets they follow and size up.  Diagnosed with multiple  lung mets to both lungs, it has sounded good to only have three they see anymore.  Well, they have company now.  my multiples are visable again... all measureable in the 2 to 3 mm... so really small, so that did not scare me... Dr. Lara says two of the three larger mets they follow are stable and the largest has now reached a 2.5 CM stage. (up from 7mm.) There are two more large 7-11mm mets not seen before last May.  They did not compare the August scans taken at the Oregon Cancer institute when we summered up on the coast. I wonder why?  Anyhow it goes, there was signifigant enough growth since May to show that the Opvido was "misbehaving" as Dr. Lara laughingly phrased it... so he wants to add something to the Opvido.

UC Davis here in Sacramento has started a small 30 person trial this month.  Dr. Lara has encouraged me to join this trial.  I would be patient #2.

it has a study Title of UCDCC #262 : Phase Ib/ II trial of Ibrutinib plus Nivolumab in Patients with Previously-treated Metastatic Renal Cell Cancer.  

I Have agreed to the trial, and the Clinical Coordinator will contact me with the schedules and so I begin.  

I really want to stay on Nivo.  I like the no side effect stuff.  But, if it is not working 100% by itself, then we gotta add something.  why not try this?

This sucks... check in when I know more...



JerzyGrrl's picture
Posts: 761
Joined: Jun 2016

This sucks. Just when you thought... Well, yeah.  Hopefully the trial will not BE a trial for you and the the two meds will get along together.  Keep us posted. 


Jojo61's picture
Posts: 1310
Joined: Oct 2013

Hey Pam!

Hang in there! Here's to finding the right cocktail for you!



hardo718's picture
Posts: 853
Joined: Jan 2016

And here's hoping this will be the trick that works best for you.


stub1969's picture
Posts: 888
Joined: Jul 2016

I'm so appreciative of the people that enter trials and help chart the course for possible future treatments.  Good luck, Pam.  I pray that you get positive results and those mets start "behaving".



Posts: 389
Joined: Mar 2013

Sorry you had issues, I can tell you I was in Phase IV trial with Opdivo and it did not work after the first three months, mets spread and grew.  They told my ONC sometimes it takes Divo longer to make changes. Three months later CT scans were even worse, although I was glad to help out with the trial the drug itself did no good.  I had one ONC on my team tell me he has had no success with RCC and OPDIVO, but I know there are people here that have good news. The problem is I lost six months and had the cancer spread.  Something for you to think about.


Allochka's picture
Posts: 950
Joined: Nov 2014

Pam, sorry to hear.

But it is good you are on trial, doctors need to keep searching for right combinations for you and others. Let's hope tral medicine works!

Jan4you's picture
Posts: 1327
Joined: Oct 2013

Bummer.. lesson learned. Now on to the new treatment plan!

We're here for YOU! a

hugs, Jan

foxhd's picture
Posts: 3183
Joined: Oct 2011

I think thats wonderful! You know you responded to nivo. So now adding a second attack to help nivo sounds like a great opportunity. Stay well Pam. Fox.

njkate07's picture
Posts: 19
Joined: Aug 2016

Hubbies mets in his lung significantly progressed on Opdivo, next step that Cabo one.

He has already been through Sutent and Votrient, we were liking the basically no side effects of Opdivo but unfortunately did not work for him

Footstomper's picture
Posts: 1238
Joined: Dec 2014

I went on to Opdivo last January. Like you it had great effects for a few months, with reduction of tumours in the lungs. By summer I had significant growth (this is definitely a trend isnt it). Then I went onto a mixture of Nivo and radiation, once again a reduction in the largest tumour. I think if growth returns I will have more radiation this time with Protons (I'm kinda secretly hoping one day to be treated with Quarks, Strangeness and Charm with some Tachyons thrown in for a tad of time travel), while taking a short vacation from Opdivo.

I like the no side-effectness of Opdivo to want to try anything else.

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