25th infusion

So happy to hear that things went well.  I am passing along another hug to you. I  know it is not a worthy as your doc's but want to send it anyway!! Keep up the good work. And another hug going out to everyone on these boards! You all deserve it!!  

Great also to hear that the med Nivolumab is also helping with lung cancer. I hear it is used for ovarian and colon also.  I think they are onto something with the immuotherapy! Anyone ever hear of the following?

http://www.envita.com/cancer/finally-chemotherapy-game-changer-for-stage-cancer/

?

TerriNick said:

confused

OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects or implications of treatment? Why isn't it a cure and what are the implications for the rest of the people with this illness? And I guess also when does it look likely to be available to Joe Public if it is such a good option?

All these questions are running around in my mind. Can anyone help please?

Terri

"OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects"  

Fox is on a Harley and the way it works is the wheels go round and round - main side-effect appears to be exhilaration!

He's on one of the hottest drugs yet found for RCC. It's an immunomodulator - helps the body spot the enemy and attack it more effectively.  It's generic name is nivolumab and it's still at a trial stage, so not available on the market yet. Many of us are praying that stories like Fox's will enable the manufacturer (Bristol Myers Squibb) to get expedited approval from the FDA so that we can get our hands on it.  Things are moving fast - all the more reason for hoping Nick gets full worth out of Sutent and can be ready to switch to nivolumab if it looks a good idea later on.

angec said:

 
I hope I didn't squeeze you

 

I hope I didn't squeeze you too tight Fox!!  But you deserve it!!    

 

Thank you Neil for the info.  I will read it.  I like all of the info you pass onto us!! Thank you!!

 

Just have to add my Good Cheers.  I'm so glad that things (healthwise) are going well.  We want you on that Harley.

Donna

foxhd said:

Why it is not available

Terri, I was fortunate to have stumbled upon a drug trial called MDX-1106. I was looking at certain death in a matter of months and felt that I had nothing to lose. It seems that most people still don't accept unproven treatments and the risks involved. This may delay the proof of effectiveness. It is also why it takes awhile before approval of even "miracle drugs". This drug allows my immune system to identify the cancer(and who knows what else) and attack it. I often wonder what long term side effects may come down the pike, but I am alive and prospering now. This is more than a year than expectations of my life.

I had some guilt at first as to why I had this oppotunity while others were dieing. I asked "Why me?"  Then a friend asked me, "If you think you feel bad, think about how your doctor feels knowing that there is a drug which can save many lives and they cannot use it".

That is what clinical trials are all about. We are research rats for the future treatment of everyone.

Trials take many years to prove their effectiveness before being offered to the public. However, this drug may be advanced quickly and be available years ahead of many trials and they are talking about 2015.

So do whatever it takes to stay alive, and be here for the opportunity up the road.

One more thought, it is working for me. It does not work for everyone. Some have died. Research is progressing. I am fortunate to be a part of it. For me. And for everyone.

Thank you Fox. I realise that not everything works for every person but it is great to hear good news like yours. Please continue to do

well on MDX. You deserve a fantastic life and you are an inspiration to others. 

Terri

25th infusion! Huge inspiration!

My brother has been offer a spot in the  BMS anti-pd1with ipilimumab trial. His first meeting with them in Monday here in Toronto.

I'm looking for personal common/umcommon side effects of pd1, and any news of response rates. since fox is such a superstar, I told my brother his experience with it.

The max dose of pd1 is 3 mg/kg in this trial. But I have no idea what to expect when it's combined with the 1 mg yervoy infusion.

We're excited to have the opportunity, but nervous:)

If anyone has info to pass along, I'd be very grateful. In turn, I'll post his experiences both here and on smart patients.com.

Kim

Advocate and sister to Shawn, 45, mcrcc

Radical nephrectomy 2010, Nov.

mets to chest/abdomen found June 2012

2 rounds of interferon

Dec12 - present - sutent individual dose trail - 75mg. Small reduction/stability. Now showing signs of minor growth.

MuayThaiSister said:

Congrats Fox! Do you know the response rates seen thus far?

25th infusion! Huge inspiration!

My brother has been offer a spot in the  BMS anti-pd1with ipilimumab trial. His first meeting with them in Monday here in Toronto.

 

I'm looking for personal common/umcommon side effects of pd1, and any news of response rates. since fox is such a superstar, I told my brother his experience with it.

The max dose of pd1 is 3 mg/kg in this trial. But I have no idea what to expect when it's combined with the 1 mg yervoy infusion.

We're excited to have the opportunity, but nervous:)

If anyone has info to pass along, I'd be very grateful. In turn, I'll post his experiences both here and on smart patients.com.

Kim

Advocate and sister to Shawn, 45, mcrcc

Radical nephrectomy 2010, Nov.

mets to chest/abdomen found June 2012

2 rounds of interferon

Dec12 - present - sutent individual dose trail - 75mg. Small reduction/stability. Now showing signs of minor growth.

 

You should get some rapid responses at Smart Patients from those already in the trial, although it's too early to get much info other than initial responses.  I believe that nivolumab is better tolerated than ipilimumab which has been in use for a little while now for metastatic melanoma. 

Shawn is pretty tough and must be a good candidate for this very promising trial.  Has he been on the 'pulsing'  regimen of Sutent (extra-high dose -> break -> extra-high dose)?

foxhd said:

uncertain answers

Our smarter members are probably more exact when answering this question. Take what I say loosely.

Research identified a molecule on our T-cells responsible for telling the T-cells (which is part of our immune system which attacks foreign viruses, bacteria, or cancer cells.) to die off when they do not have a target to destroy. Called "Programmed die off."  Next time invading cells get detected, our immune system produces killer cells and they repeat the process. Again, when they complete their job, they have nothing to do, and die. Some cancer cells have the ability to initiate this die off which allows them (cancer cells) to protect themselves. They grow and prosper. ( everyday, we have hundreds of normal cells reproducing with errors which can become cancer.)

Alright to this point?

Researchers found a molecule that can bind with the T-cell blocking it's programmed die off. MDX-1106, is one of them. It is an "Antibody" that can be produced in the lab. Now this T-cell remains active, and continues it''s job in destroying foreign cells (at least in the case of some kidney, skin,lung, prostate and hopefully some other cancers, this is showing promise.) The cancer cells become vulnerable and get destroyed. In our case, it is being studied for "Clear Cell Renal cancer."

In developing a plan to try this discovery on people, they call the early stage of experiments on people "Phase 1". The phase 1 trial was to determine safe dosage to be used. I guess the dose of 10 milligrams per killigram of bodyweight is the "high" dose deemed safe at this time. This is what I am on. They also use .3, and 2 milligrams per killigram of body weight in their experiments.

That being determined, they set new goals. They assigned people to recieve one of these 3 doses and will follow their response for up to several years depending on their response and side effects. This is "Phase 1b."

Now here are important points.

1, it doesn't work for everyone. So far about a 30+/- % response rate is being shown. Some have had complete response. Some partial. some no response. Why? They are looking at this. It will help to determine designer drugs in our future. I don't know what they are considering my response rate. Certainly partial so far.

2. Long term side effects are not known. This is the risk we take. In my case I was looking at death anyway. So to me every risk was worth the try. Some people have had complications resulting in death. Pnuemonitis is one. Maybe heart, liver, thyroid, or allergic reactions may happen. Some side effects are anticipated. Obviously, many are unforseen.

How many other phases will there be? Don't know. I don't think there is a specified number. They probably make it up as they go until the efficacy is worth the research and risks. But there is so much promise of this being a potential cure, or at least the potential to keep some cancers at a treatable and chronic condition, approvals may be pushed faster than many drugs are given. After all, it is life or death. Not heartworm. Of course it has to be a money maker for the drug companies or will be dropped in a heartbeat.

This is a condensed version and roughly accurate. But in any case, Boy, am I lucky or what? My response is great. Side effects are not even worth mentioning. Some aches, pains, skin dryness. Maybe just my old age. Time will tell.

The biggest message I'd like to share is for people to be more open to participating in clinical trials. Maybe 10% try unproven treatments. Too low a number considering most other treatments will probably fail with time. There are indications for each choice. We need to stay informed. We need to stay alive for the next great thing. When this was offered to me, I was not aware of it. Obviously my previous Drs. didn't know enough either.

Thanks Fox for the explanation. It does help and I sincerely hope that you go on enjoying the benefits of this treatment for many many years to come - until they find a cure..

Terri