Nivolumab Update - Birthday Scan Results

Frank302 said:

Right you are fox

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 .

Wish you well, and enjoy that drink!

Frank302 said:

Continueing treatment

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 .

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 said:

Right you are fox

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 .

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

Peggyz said:

going off a successful treatment?

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

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 said:

Once it is approved by the FDA

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.

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 .

Darron said:

Slight growth

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?

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.

foxhd said:

Expensive

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.

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.