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Nivolumab Scan Results-New Met

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

I had a scan on Thursday and it was my first "bad" scan since starting on Nivolumab in Feb. 2013.

There is a new 6mm met in the lower lobe of my right lung. Everything else remained clear. When we looked back at previous January scan, it was actually there at 3-4 mm and was viewed as a blood vessel. In the back of my mind, I figured that I would see a met at some point, it just stinks it is son soon after being declared NED In January.

the plan if action is to scan again in 6 weeks for a quick snapshot. I continue Nivolumab (one progression allowed) and will start back Sutent per the trial in 6 weeks if stable or nominal increase. If it gets large enough, a resection is planned, if more mets show up, IL-2 is planned. We are trying to knock it out quick.

Antine have good success with a single met from lung removed?

 

NanoSecond's picture
NanoSecond
Posts: 589
Joined: Oct 2012

Hi Darron.  I am so very sorry to hear this.

If you have not done so you might want to ask about removing that single lung met over at SmartPatients.  I think you will hear several different ideas about how best to deal with it.

Looking at your profile I note that you stopped the Sutent part of the trial back in October 2013.  But now your doctors are acknowledging that this met actually appeared in your CT-scan back in January.  Does this not imply that possibly your NED status was due more to the Sutent than the Nivolumab?  If so, why wait another 6 weeks before starting back on it?

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

The idea is that Sutent wasn't the active agent. I had stopped it in October and continued to shrink the adrenal met. I have been re-thinking and think that I will propose starting the combo after 3 weeks. I have a vacation planned and do not want to be on Sutent while skiing.

it does make sense that I was having success with the combo, why not go back to it....

one putt
Posts: 72
Joined: Sep 2012

Sorry about your news. I'm surprised you're only allowed one progression. I'm in the nivolumab/votrient trial and 20%  progression is what knocks you out of my trial. I hope going back to sutent does the trick for you.

Neil, I've been folowing your status on SP and it seems like things could be moving in the right direction. If anyone can prove immune-based therapies work with chromophobe, it's you. Keep fighting.

NanoSecond's picture
NanoSecond
Posts: 589
Joined: Oct 2012

Many thanks for those kind words of encouragement, John. I am certainly trying to give it my best shot.  :)

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

One Putt

I should have said 1st progression. I had to sign new forms, but I am still taking Nuvolumab. I will resumes Sutent in 3 weeks if allowed. My aem was the combination, but was allowed to stop Sutent back in October. I am going back to basics and getting the mix that have me the best results from the start.

Fox, "I have not yet begun to fight". I have always liked John Paul Jones' words. 

No worries, today is a good day.

Srashedb
Posts: 217
Joined: Dec 2013

darron:

why were you expecting a met? And, how long since your initial diagnosis? Logically, I agree with nano about the sutent but what did your doctor say? It might be possible to surgically remove the met since it is just one.

Sarah

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

sblairc's picture
sblairc
Posts: 177
Joined: Feb 2014

I hope you have a great vacation and come back ready to kick those mets to the curb! 

Srashedb
Posts: 217
Joined: Dec 2013

darron:

enjoy your ski trip; my husband had a laminectomy last summer for a spinal met and the doctor nixed a ski trip this year so take a slope for him! He really missed it.

sarah

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

Cancer just sucks. I understand what you are going through. I also am very happy for those who have remained ned. It is unpredictable. Having your head screwed on tight is one thing, but ending up with it facing in the right direction takes toughness. Darron, your head is properly aligned and it is another challenge but you are up for it. I remember when I thought the nivolumab was going to cure me but the surprises continue. Ski your buns off, eat pizza and beer, and come back refreshed. Then dig your heels in and plan next years ski trip. Show the newbies how it's done.

brea588
Posts: 119
Joined: Jul 2012

Enjoy ur trip and have a great time on the slopes.  My thoughts and prayers are with you.

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Did they do a lung biopsy?  Im your friend with similar diagnosis.  In jan, i had all these tests done, due to my new oncologist.   They thought i had a lung met and did biopsy, which turned out negative, but my lung collapsed - not pleasant.  Adrenal tumor appears to have grown, but im very hesitant to remove it at this,point.  Found out in Feb that i was getting the placebo, so i guess thats good news.   I go back 4/21 for more scans and hopefully determine if i should get on some treatment or get it removed.  I wish you luck and my prayers are with you!  

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

No, waiting to see if it gets bigger. send me a message and tell me about what you has with the lung. I want to learn from your experience. Hopen you scan well and keep the adrenal.

Bellweather
Posts: 51
Joined: Jun 2013

Daron, not news we wanted but I cant help but continue to feel we are all in this together.  You are a great contributor to the mental health of many of the csn family and will continue that important role.  Have a great vacation and keep us posted, we love you brother! 

Bellweather

dancnbear1
Posts: 53
Joined: Dec 2013

Hang in there. nothing but positive thoughts and prayers coming from my way to you and your family. this is just a small bump that you will beat

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Sorry you're going thru this, Darron.  I'll keep you in my prayers. 

Try to focus on your upcomming vacation and worry about this when you get back.  Easier said than done, I'm sure.  But try.

Careful on them slopes out there!

 

texMD
Posts: 13
Joined: Jun 2013

Sorry to hear about this.  My wife's first scan after 8 weeks of nivolumab showed significant progression.  We were given the "one progression allowed" and we're about to get the next scan in 2 weeks.  Overall she's feeling OK but still having significant night sweats, weakness, and weight loss.  We may move to traditional chemotherapy if nivolumab doesn't work for us.

Jojo61's picture
Jojo61
Posts: 450
Joined: Oct 2013

So sorry for this news, Darron. Wishing you better results in 3-6 weeks. It sounds like you are in great frame of mind, though! Way to go!

Enjoy your ski trip!

Hugs

Jojo

Srashedb
Posts: 217
Joined: Dec 2013

what is tradional chemo for renal cancer? I didn't think they used that for this type of cancer.

Sarah

texMD
Posts: 13
Joined: Jun 2013

typically RCC is not responsive for traditional chemo (ie, attacking rapidly dividing cells).  However, it has been used with with aggressive RCC subtypes, notably those with sarcomatoid features.  See: http://www.ncbi.nlm.nih.gov/pubmed/21720184

danbren2's picture
danbren2
Posts: 199
Joined: May 2013

Darron,

     Sorry about the news, but in spite I hope you can have a tremendous vacation! Hope that it is full of full, rest, and relaxation and brings you home ready to kick cancer butt!

                                      Wishing nothing but good health reports for you!

                                       Brenda

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