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Nivolumab Update - Birthday Scan Results

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

Birthday scan results today are simple and to the point. 

"1) No Evidence of Metastatic Disease."

lung mets- GONE!

3.8 cm Adrenal tumor-GONE!

See my bio for more information.

Protocol from phase I Nivolumab- Sutent trial has been revised and I will continue with Nivolumab infusions every 3 weeks until any adverse effects are encountered. I have not taken Sutent since October when adrenal tumor was reduced to possible tumor or swollen adrenal gland.

Drinks are on me tonight, who needs a Dirty Banana?

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

What a great Birthday Present Darron, Congratulations! It looks like this group is on a roll at the moment with clear results:) I'd love to celebrate with you, so pour one for me, with an extra,extra long straw!

Well done:)

 

Djinnie xx

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

That is some great news Darron ! I'm on Nivolumab too so your result has special meaning for me . I'll be getting a scan in two weeks .

todd121
Posts: 580
Joined: Dec 2012

Here's to many more clean scans!

Todd

Bellweather
Posts: 46
Joined: Jun 2013

Darron, I am stoked about your NED status!!  Thank you for sharing, proof of the advances of rcc meds.  You really made my day, I can only imagine how pumped you and your loved ones must be at this time.  Nivolumab  is sure to gain approval soon, hopefully before the end of the year.  Great work my man!  I will have one on the D man, hold the bananas:)

 

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

Awesome! Awesome! That feels so good to hear. Lets hear it for nivolumab!! Good for you Darron! I'm so happy that more and more people are getting good results with nivolumab. I want to get back on it. I feel so good for you. Nice.

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

Great news.! Thanks for sharing.. Ron

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

Darron, What great news!  And on your birthday, doesn't get much better than that.  You have much to celebrate, so bottoms up! 

 

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

Heck!  I'll take a couple of those!!!  And a Jamaica Smile!  I could not be happier for you!  That is SOOOO excellent! Hugs from FL. (Yes, we just got home and I am totally wiped out!  Going to beddie-bye shortly, not even going to unpack)

Jojo61's picture
Jojo61
Posts: 379
Joined: Oct 2013

Congratulations and Happy Birthday, Darren!

Such great news! Celebrate, celebrate, celebrate! This group is kicking RCC's butt!

Cheers!

And Tillie - welcome home!

Jojo

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

Welcome home!!  It's something to return from vacay only to have to rest up.  Whomever said vacations were restfull and relaxing was no doubt, a man.  Glad you enjoyed your trip, would be fun to see pics.

hugs,

Sindy

tonib's picture
tonib
Posts: 33
Joined: Nov 2013

Awesome!  What a birthday gift!

Srashedb
Posts: 186
Joined: Dec 2013

Awesome for you and happy birthday!!!! Encouraging for those who follow

Sarah

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

I did Nivolumab trial for 30 months ( Anti PD 1). I was dx'ed with Stage 4 Melanoma...given 6-9 months in 2009. I have been NED for 3 years, 9 months and 1 week!!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

That is brilliant Lynn congratulations, such posts are so encouraging for others:)

 

Djinnie x

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

Lynn, what an inspiration you are!  Stories like yours brings hope to so many people.  Thanks for sharing and I pray for continued good health for you!! 

Happy 2014!!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Bam!!! thats what i call KICKIN IT!! enjoy your drinks.

dancnbear1
Posts: 47
Joined: Dec 2013

ALL RIGHT...HOT DAMN...and Happy Happy

 

BDS's picture
BDS
Posts: 100
Joined: Aug 2012

Just Logged on after Holiday break.  Darron Congratulations !!! Your NED status just made my day.  What a great way to start the New Year with HOPE!  Now, if only Bristol-Myers Squibb would file Nivolumab for FDA approval. I really wonder why is this taking so long and when they plan to file. - BDS

 

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

Wow! so many good stories of people who are now ned due to nivolumab. 2 years ago when I was put on it, I was the only one posting about it. And I was doing well. That's why I was the poster boy. From no chance to probably will be cured. I had some new growths which bumped me out of the trial due to the protocol this past june. Bummer. But at that time I think everyone knew that this drug was a miracle. I am thrilled for everyone on this drug. I hope to return to it sometime.....if necessary.....We will make a plan after my next scan. Perhaps my time with nivolumab and Il-2 will be the combo I needed. When I grow up I want to be just like you guys......I'll tell you my dream....I'll be 62 in march. Fully retired. No cancer. Harley full of gas. Golf clubs polished and ready to go. Back to jogging. I think I'll also paint my house. Then many more years of NED. Pipe dream? I hope not....I forgot to add that nivolumab will be available for EVERYONE!

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

My Dr. is so convinced that Nivolumab is the real deal that he plans to take me off it as soon as it is approved and then just monitor how I am doing and then if the cancer ever comes back retreat with Nivolumab .

I want to see this drug approved for everyone ASAP !

It's such an easy treatment to take with very minimal side effects . And it's effect on my own RCC is astonishing .

This is my experience with this treatment . After loseing my left kidney I was found to have two tumors . One in left lung , one in abdomin and lymph nodes were hinky . Tried Sutent alone for six months . It didn't help me . I started Nivolumab on Dec. 8 ' 2011 . The day before my birthday . I went back six weeks later for a ct scan . Both tumors were still growing especially the one in my abdomin . Probably due to all those years of clean living and exercise . Went back in six weeks for another scan . Lung tumor about the same size , abdominal tumor bigger yet . It must have been pumping iron .

I went home convinced Nivolumab was not going to work for me .

The following week I went to bed one night experienceing the the usual pain in my lower back . Took Oxycontin planning to wake up and take more as needed during the night . I slept through the night for the first time in months . The next morning the pain was completely gone . As though it had never existed . I was not about to start celebrating because I figured the tumor had probably just grown so big and bad that it had destroyed the nerves and I couldn't feel the pain anymore .

With my next scan all signs of cancer were completely gone . I went from hearing " Your tumors are still growing " to hearing " Your tumors are completly gone " in six weeks time .

I really want to see Nivolumab approved . I hate to think that it could be helping so many people and they just can't get it yet .

johns son
Posts: 12
Joined: Jan 2014

Wish you well, and enjoy that drink!

texMD
Posts: 13
Joined: Jun 2013

Great news!  My wife just started the nivolumab arm in the checkmate trial.  So happy we got this drug given the promising results.  Frank --  I'm curious about your experience. You initially progressed on nivolumab -- what was your doc's rationale for continuing treatment after 2 consecutive scans?  I'm glad you stayed on it(!!) but wonder what would define failure after 12 weeks of growth.  My wife's my first scan is at 8 weeks (she'll have 4 infusions by then) and I was under the assumption we'd know at that point if it's working or not.  Also did you (or anyone else with positive results with nivolumab) have sarcomatoid features?  

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

my scan results are in my bio, but I had 12% growth on my 1st scan. the scan showed signs of cell death on the inside of the tumor. I think 15% growth was the threshold for being kicked out of the trial. on that scan, the doctor saw it as good news and we felt it was mixed news because of the size change, but it was basically swelling from T-cells attacking and killing it. my doctor was spot on in predicting just about all of my scans.

Don't be alarmed if there is small growth the 1st scan ask them if there  are signs of cell necrosis .

best of luck on the trial. Is your wife taking anything else with Nicolumab?

texMD
Posts: 13
Joined: Jun 2013

Thanks for the heads up regarding tumor necrosis.  She was on votrient for about 4 months and the tumor grew substantially.  I'm curious to know about others pathology.  Any one with sarcomatoid features who did well on Nivolumab?  I think approval isn't far off - at least for melanoma - and then physicians will be able to at provide infusions off-label.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

My doctor's thinking in keeping me on Nivolumab is , if it ain't broke , don't fix it . Because Nivolumab has not yet been approved if I stopped Nivolumab and cancer returned I would not be able to go back on it because I would have dropped out of the trial . Once it is approved I can stop taking it and if cancer recurs I will be able to start taking it again . Since my cancer was stage four and agressive why tank the chance ? Once my cancer was gone if there had been any recurrence I would be out of the trial . I'm in the phase 2 dose ranging trial . Next week I get my 25th scan and 36th infusion . Since side effects , at least for me  ,have been a breeze I'm more than happy to take it for the rest of my life if need be .

If this isn't real clear , forgive me . I'm not fully awake yet .

Don't be overly alarmed if your wife sees no improvment  for the first several scans . It seems that Nivolumab takes awhile to start  working but once it kicks in results are dramatic .

Wishing for the best possible outcome for you .

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

That I would have been in your boat , Frank.  I was more than willing to stay on nivolumab for life. Must admit I'm a little jealous. I was still in a phase one trial. Protocols were different. I was told that earlier participants were bumped from the trial because of swelling and inflammation of tumors. Then they decided that the swelling and inflammation were a good sign. When I got bumped it was because of new tumor growth. Now my trial protocol has allowed for some new growth. But too late for me. I am SO happy so many people are now on nivolumab and are doing well. Proud to have been a part of it.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

The protocols are all in favor of the trial and us guinie pigs have to take what we get . It ain't good , it ain't right and it's a darn stinkin' shame . I hope to God they get this stuff approved soon . I've heard mention of late this year or early next year . I wish it could be today .

Peggyz
Posts: 7
Joined: Jun 2011

Additional questions: what type of RCC do you/did you have?  What was the pathology, and how did you choose this trial?  Is this with Nivolumab alone or in combination with other drugs?  Did you have nephrectomy, and at what stage were you diagnosed?

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

Click on my bio and there are details, 

17 cm clear cell in right kidney. I don't have the specifics handy, but it included right adrenal and fatty tissue within the capsule. some renal vein intrusion but removed with clear margin.Radical right in Oct 2012. 3.4 cm tumor on a left adrenal and 3 mets to lungs Treated on trial.

sutent-Nivolumab combination, started with 50 mg Sutent and Nivolumqb every 3 weeks.

At time of trial start, option was IL-2, trial, or remove adrenal gland by surery. IL-2 scared the crap out if me and my doctor felt Nicolumab was a potential cure. He said he would have not recommended it over IL-2 unless it presented a good chance of a cure. He he had the spot in the trial now. It it didn't work, I could always do IL-2 later. He was not sure he would have a spot if I did IL-2 first.

it was a no brained to me, I could live a normal life and have a shot at a cure. IL-2 was hospital time, disability from work and famy, and expense. It was worthodox the try.

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

My original protocol was to be dropped from the drug as soon as there was no evidence of cancer. It it my understanding that in an effort to get correct maintenance dosing, they ammended the trial and allowed for continued dosing to get it right And figure of what the best maintenance does is for future patients.

I hate it for guys like Fox that got kicked out. I was nearly dropped as well on two occasions for platelets and for tumor growth. Maybe it is my Doctor and his staff, but I feel they have always fought for me and what is beat fir me. The protocol must be set and followed for patient safety and accurate information. Yes, we are guinea pigs, but we chose that path.

The change to allow for a maintenance dose tells me they know it is good stuff, let's get it right in phase I.

Peggyz
Posts: 7
Joined: Jun 2011

Frank, I am confused to hear you say that your doctor would take you off Nivolumab once it is approved; assume that means you are in  a clinical currently getting it.  Are you on some maintainence use of it?  If the cancer is gone, thanks to Nivolumab, or at least invisible to the CT scans, how long would you continue to take it to wipe up any unseen mets?  I would be concerned that something could start up suddenly.  Love to hear more about this approach.

Of course, I am thrilled to think there is another drug in the arsenal, but want to understand the usage issue.

Peggy

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

At this time Nivolumab has not been approved for use by the FDA . It is in the clinical trial stage . The only way to get it is to be a participant in one of the clinical trials now being conducted  as a part of the approval process .  When I signed on to be a part of the trial the agreement was that I would take the treatments until such time as the cancer  progressed when I would be dropped from the trial. My tumors completely disappeared from the ct scans after the first few treatments .They knew it would take a few treatments before Nivolumab would be effective .As far as my oncologist is concerned I no longer need the treatments because no cancer is visable on my ct scans and he has gone so far as to say that he dose not think it will return . Those are bold words coming from an oncologist specialsing in RCC . We all know how stubborn and unpredictable RCC is.  Who knows but what there might be cancer cels floating around my body just waiting for an oppurtunity to pounce ? If that were to happen then hopefully the Nivolumab would nock them out before they would show up on ct scans . That is why I continue to get the treatments . Just to be on the safe side . If I stopped taking Nivolumab today and cancer showed up in six months I would not be able to get treatments again until it is approved for use . I'm not into taking chances with cancer. I know Nivolumab has knocked the cancer down , I'm not 100% sure it has knocked it out .

Researchers think Nivolumab has a long lasting effect against cancer even after patients stop treatment bacause it works with the immune system . It " takes the brakes off the immune system " allowing the immune system to destroy cancer cels . That is something our immune systems  will not normally do because it does not recognize cancer cels as being a threat . It is thought that our immune systems have  " memory " . Once Nivolumab has made it possible for the immune system to recognize cancer cels as a threat and to attack and destroy them the effect might last for a long time . In the same way that vacination works against smallpox or measels or chicken pox .

After Nivolumab is approved by the FDA as a treatment for RCC my oncologist plans to stop the treatments and have me come in for regular scans in case cancer should return . I would then be able to start the treatments again because at that time Nivolumab will be available for everyone .

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

the pharmaceutical companies won't be giving it away for free. They will expect to get big bucks in return from the insurance companies. So at that time they will  most likely discontinue the "free" trials. Then it will be available for all with clear cell carcinoma. Survival rates will jump through the roof.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

Good point fox .

My insurance has paid a huge amount in hospitol fees and all the doctors and nurses and everything else under the sun . The only thing free is the Nivolumab itself . I figure I am one of the most expensive people walking around today . Oh well I'm worth every penny .Wink

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

Thank god for insurance. Just my IL-2 treatments were about $300,000 per week!..x4! I had paid thousands for biopsies and testing that were supposed to be covered by the trial. I contested and they eventually sent the money back to me. Medical billing is more slimey than used car sales. You never know what you are paying for or the real value of the services you recieve.

one putt
Posts: 72
Joined: Sep 2012

Fox, I had a recent discussion with my onc about nivolumab (when you and I started it was called MDX1106) being approved and he told me one of the recently approved melanoma drugs is costing over $100,000  per infusion.  He figures nivolumab will be similarly priced. For those of you unfamiliar withmy history : rt radical neph Nov 2011, IL-2 treatment Jan 2012, nivolumab/votrient trial since May,2012.  II'm stage 4 mdx with multiple lung mets, multiple bone mets.Since teatment most lung mets gone and a total of 60% reduction in tumors since beginning my trial. In my trial  a 20% progression knocks you out of my trial. In my case my doc will probably pull me sooner if he determines I'm no longer getting any clinical benefit from it. I'm currentlythe longest responder at Hopkins in my arm of the trial. Hopefully nivolumab gets approved next year so many others can benefit from the drug that literally has changed my life.

P.S. Fox my IL-2 treatment "only " cost $250,000 a week. I can't imagine  Hopkins gave me a discount or that they are any cheaper than New Haven so I guess we'll have to chalk it up to inflation. Stay well.

foxhd's picture
foxhd
Posts: 1914
Joined: Oct 2011

John, I guess you got the Wal-mart generic version. Made in China. Do you remember having to bring in a coupon? I'm glad you are still responding. I think we can live this way for another 10-20 years. It's OK with me. You can't be *****in too much. Be good. Fox....by the way, let Alice know that I got my money back. Thanks.

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I heard a very similar number for each infusion. That is a heck of a lot of money for 600 ml.

Glad to hear you are still responding. I have a friend on the votrient arm here in Charlotte since Nov 2011. He has also seen 69-70% reduction. He was 60% on his first San and slower, but steady since then.

Say hi to Alive for me!

a_oaklee
Posts: 167
Joined: Nov 2013

Hi Darron.  I haven't been online in awhile during the holidays and new year festivities.  I am thrilled that you are NED, and my husband and I are looking forward to trying this medicine when it is available.  Thank you for all the information that you shared with all of us. 

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