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25th infusion

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

I had my 25th infusion of MDX-1106 yesterday. My Dr. asked me, " Do you have any pain?" nope. "Night sweats?" nope. "diarrhea?" nope. "Constipation?" nope. "Fatigue?" nope."Mouth sores?" nope. Then she says, "I'll have to write that patient complains of feeling too good." Then I got my hug. I hope I can do this every 3 weeks.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

SmileSmileSmileSmileSmileSmileSmileSmileSmileSmile

cran1's picture
cran1
Posts: 129
Joined: Mar 2013

You da man!

 

Blueraidermike
Posts: 16
Joined: May 2013

Long time lurker, finally registered on the site to contribute.   I have watched you and love your attitude!    I am going to be apart of the the phase one trial with nivolumab /ipilimumab combo.     Should start in about 8 weeks.   

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Will be interested in following your particiipation in the upcoming trial.  Good luck!

todd121
Posts: 640
Joined: Dec 2012

What some guys won't go through for a little feminine affirmation. :)

Great news fox. Glad to hear it.

BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

Todd

todd121
Posts: 640
Joined: Dec 2012

What some guys won't go through for a little feminine affirmation. :)

Great news fox. Glad to hear it.

BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

Todd

todd121
Posts: 640
Joined: Dec 2012

What some guys won't go through for a little feminine affirmation. :)

Great news fox. Glad to hear it.

BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Todd, the generic  name is nivolumab. 

In due course, BMS will doubtless give it a brand name, once it's approved and ready for market.

AprilandChuck's picture
AprilandChuck
Posts: 101
Joined: Feb 2013

So happy for you!! and Hopeful for us all.. Chuck's Oncologist is getting us a schedule for infusions because once the IPI part is over we go to every 2 week infusions of just Anti PD1.. Chucks second infusion of both drugs in Monday.. he is very very hopeful about this course of treatment..his first scan after starting the treatment should come sometime at the begining of June.. I have started dreading scans.. but hoping this changes.. Fox you and other like you are an inspiration to us all.. Thank You!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

We all got our 25th Fox-blood infusion - always makes us feel better.  Laughing

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

Congrats Fox. Now the next time please ask the good Dr. when she thinks the FDA will spread the joy for the rest of us. - BDS.

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

That is the name of MDX-1106.  I am happy to the core. The biggest side effect is that I am selfishly involved in my current treatment and am not as up to date in all the other treatments everyone else is recieving. I am just so thrilled not to be dead. I fully apologize for not being up to date and able to concentrate on all the options the rest of you guys are involved in. Expecting to be dead a year ago kind of takes the wind out of my sails in terms of knowing about other drugs people are using. I sometimes feel like the first guy climbing Mt. Everest. On the way up the goal excludes others who fall to the side and die in the snow. But I must concentrate on the prize. However, the point is to stay positive. Focus on the good. Eliminate the negative. Don't waste any valuable time you could spend with your loved ones. If one path is unnegotiable, find another. I often reitierate that it took me 4 oncologists before I found the wonderful woman who is saving my life. If I start from day one of symptoms, it is 5. Please don't forget that all forum participants. Keep pushing. Know your options. I got lucky. Maybe you will too. But it won't happen if you aren't aggressive. I don't take credit for being here. I hope that never comes across.  This is not the treatment I thought I was seeking. It is just amazing that the other Drs. never proposed this option to me. What the hell did I know about kidney cancer? Dr. Kluger at the Smilow cancer center at Yale New Haven knew what to do. I hope I didn't hurt her when I squeezed her yesterday. There is hope. Whatever treatment you recieve, do your best. Know that staying alive will make future options available. Nivolumab is being considered for a 2015 availability. Keep the faith. I will and forever share my Karma. Believe me. I love you guys. And this goes for all cancer victims. Actually anyone ill. One more very important point. I am not cured. But I AM living with cancer.

I am alive
Posts: 229
Joined: Jul 2012

Hugs to you, Fox.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

#25 - Congratulations!  Thank you for continuing to WOW us with that positive attitude.

 

And P.S. - we love you right back!

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

Glad to hear you are doing as good as you are Fox

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Yay Fox! I'm very happy for you!

--David

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

YOU ROCK!Cool

Mikeyswife
Posts: 31
Joined: Mar 2013

Your kidney cancer journey has not been in vain.  The inspiration you give all of us is unbelievable.  And I agree, you do RockCool.

 

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Ditto to everything you said, foxhd. I have had 17 infusions of another anti-PD-1 drug, MK 3475 (lambrolizumab) for NSCLC and no diarrhea, no fever, no breathing problems, not nothing! -just some itchy red spots. A yeat ago I also thought I wouldn't see my daughter graduate from college. Yet I just ordered the tickets for the ceremony in June! Driving across L.A. in rush hour traffic every three weeks is a pleasure, just to get my MK 3475. Yes, I still have Stage IV lung cancer, but nobody knows it from looking at me. My drug has just been given breakthrough status, so hopefully we'll see it become available in a couple of years. I come on this site because  I don't know anyone else with lung cancer in an anti-PD-1 trial. And I also worship my smart onc at USC/Norris who got me in this trial.

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Ditto to everything you said, foxhd. I have had 17 infusions of another anti-PD-1 drug, MK 3475 (lambrolizumab) for NSCLC and no diarrhea, no fever, no breathing problems, no nothing! -just some itchy red spots. A year ago I also thought I wouldn't see my daughter graduate from college. Yet I just ordered the tickets for the ceremony in June! Driving across L.A. in rush hour traffic every three weeks is a pleasure, just to get my MK 3475. Yes, I still have Stage IV lung cancer, but nobody knows it from looking at me. My drug has just been given breakthrough status, so hopefully we'll see it become available in a couple of years. I come on this site because  I don't know hardly anyone else with lung cancer in an anti-PD-1 trial. And I also worship my smart onc at USC/Norris who got me in this trial. My first onc never said a word. Second opinions are a must. And I take every opportunity to spread the word.

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

It's great you found our site and responded! Anti-PD-1, God we are lucky. My biggest regret is that it isn't available to more people yet. I guess we have to be the pioneers and do good for everyone else first. Like you, NO ONE ever expects that I am sick. Stage 4 here also. BTW, I weight trained and ran 2 miles this morning!

angec's picture
angec
Posts: 653
Joined: Mar 2012

?

 

angec's picture
angec
Posts: 653
Joined: Mar 2012

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/

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

Have not heard of them until now - but they are not unique by any stretch.  There are lots of choices out there.

Here is another company that does a more focused job (in my opinion):

http://www.rational-t.com/

This kind of approach, unfortunately, will not work for most targeted therapies.  It may be of interest to consider for those undertaking traditional chemotherapy.

TerriNick
Posts: 43
Joined: Mar 2013

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

"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.

TerriNick
Posts: 43
Joined: Mar 2013

Great, thanks for the update Tex. Let's hope that it gets to market as fast as possible for everyone then.

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

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.

TerriNick
Posts: 43
Joined: Mar 2013

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

todd121
Posts: 640
Joined: Dec 2012

Fox,

What phase trial is this?

Todd

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

Phase 1b, Todd. I forgot and had to think about it. I recieve 10mg/kg of body weight every 3 weeks.

TerriNick
Posts: 43
Joined: Mar 2013

Sorry to be dim again but what are the trial phases please? What does 1b mean? How many phases are there before something is approved?

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

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.

TerriNick
Posts: 43
Joined: Mar 2013

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 :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Until they find a cure - no, Terri - let's hope that for some folks it is the cure.  Fox has done brilliantly and the fact that it's an immunomodulatory drug must hold out the hope that it could enable the body to cope with the cancer where it couldn't before getting the leg-up that the drug gives it.  Lots of hope around for us all!

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

Angec, I'll share your hug anytime. Thanks.

angec's picture
angec
Posts: 653
Joined: Mar 2012

 

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!!

 

donna_lee's picture
donna_lee
Posts: 429
Joined: Feb 2009

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

Donna

MuayThaiSister
Posts: 5
Joined: Sep 2012

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.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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)?

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Kim / Tex,

Forgive my ignorance on this trial but are the medications both delivered by infusion in this trial?

 

Is this the same trial that Chuck (as in April and Chuck and Chuck who punched the goat) is on? I know I've been absent a bit but I haven't seen anything from them recently.

 

Also, I see under clinical trials that John"s trial (Nivolumab/Votrient) is still listed as actively recruiting. But is that true or has this trial (Nivo/ipi) taken its place?  John's research nurse told me months ago that they were no longer recruiting for the Votrient/Nivo trial at Hopkins due to liver toxicities experienced by many patients, but it's still listed as "actively recruiting." 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Smart patients now has several different threads all about this trial [you can probably hear my teeth grinding all the way from Scotland!] In the Clinical trials search there you'll find full details (also via the Govt. site).  On the point you've asked, Alice, the answer is :

Experimental
Arm I-1: Nivolumab + Ipilimumab
Nivolumab 3 mg/kg solution intravenously (IV) every 21 days during Induction phase and every 14 days during Maintenance phase until Progressive disease (PD), toxicity or discontinue for other reasons Ipilimumab 1mg/kg solution intravenously (IV) every 21 days during Induction phase (Ipilimumab will not be administered during Maintenance phase) until Progressive disease (PD), toxicity or discontinue for other reasons
Biological
Nivolumab
Other Name
BMS-936558 (MDX-1106)
Biological
Ipilimumab
Other Name
YERVOY™
Experimental
Arm I-3: Nivolumab + Ipilimumab
Nivolumab 1mg/kg solution intravenously (IV) every 21 days during Induction phase and 3mg/kg solution intravenously (IV) every 14 days during Maintenance phase Ipilimumab 3mg/kg solution intravenously (IV) every 21 days during Induction phase. Ipilimumab will not be administered during Maintenance phase

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

From one old fart to another....nice going... I see you're still taking no prisoners !

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Great news fox!  Thank you for all the info.  Very well explained.

Lou

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The great promise of this trial makes it all even more exciting.  Here's an inspiring story of someone who's been on that trial for a year and a half so far and is cancer free:

http://www.salon.com/2013/05/17/my_truly_remarkable_cancer_breakthrough/

 Just for clarity - nivolumab is the trial drug Fox is on  and ipilimumab is the already FDA-approved drug (for melanoma, trade name Yervoy) which they're trying out on other cancers, including RCC.  Both are huge molecule monoclonal antibody drugs manufactured by BMS (Bristol Myers Squibb) and Ono Pharmaceuticals.

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

To all of you that participate in trials:

In the past, I contimplated whether I would participate in a trial if I needed treatment and wasn't so sure I would.  After the comments here about how this treatment is not available to all who need it, I was thinking how fortunate we are that trials are available and that some patients are willing to participate, especially after reading an article last night that emphasized how important it is to make sure that those with "unclassified" histology are excluded from trials because it muddies the waters (my paraphrase).  That means that those of us in that group are left to only the approved drugs which would never be approved were it not for those of you who can and do participate.  I know that for some the decision is easy because they have run out of options, but I believe some of them and others are also motivated by the hope that their experience will benefit others down the road.  I am NED and hope I don't ever need treatment, but if I did, my options would be with drugs that, thanks to you all, would have been tried and approved.  Although I don't need treatment, I thank you now, because knowing there are promising options coming lessens my fears now.

And, Fox, as always, you are a, and do, ROCK!

Kathy

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Enough said!  But you are right, without those doing trials, the world would be a more bleak place for those of us that follow!

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