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MDX-1106, part three

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

OK. Here we go. First of all, excuse me as I am getting a bit emotional. I do know that I am going to cry tonite. Second of all, if I begin to slur my words it's because some one told me to have a couple beers to celebrate. So, I took my own advice!

Went for 7th infusion today of 10 mg/per kilogram of body weight of MDX-1106. Or Anti PD1. But first was the Doctor visit.

To rehash for many newer members, I had a left radical nephrectomy for stage 3 cancer in March 2011. Recovered well last summer with negative scans. In October 2011 found out I had numerous tumors in my lungs, liver, and chest lymph nodes. My local oncologist said she could do nothing for me. Maybe I would not make through March 2012. I needed to go to a bigger cancer center. A friend pulled some strings and got me to see a top rated oncologist at a bigger center. Bottom line is he said "Good Luck". He agreed that if I was his own family member then Interleuken 2 was worth the chance. But they didn't do it!

So I got to Yale in a bit of a panic. Yes. They could treat me with the Interleuken but......Maybe, I would like to hear about a trial drug of MDX-1106. This drug blocks the programmed die off of T-cells in our immune system allowing the T-cells to attack cancer cells. Specifically Clear cell renal cancer and melanomas....There were to be a limited number of candidates accepted into this trial. But I had to meet all the criteria. I really liked the idea and went for it.

Many weeks of blood work, genetic testing, ct scans, pet scans, bone scans, brain scans and biopsies took place. Then I recieved the news. My first infusion was to begin in December then every 3 weeks there after. Ct scans every 6 weeks.

By the end of December and in January, the cancer now had spread to my pelvis and spine. Very painful. I was needing percocets to get around the house.

But my pain started going away. I returned to exercise and running. I continued with treatment and my scans began to show healing in my bones. My lung and liver tumors were shrinking. Some are GONE!! I am feeling GREAT!!

So Today I go in for infusion #7. Pre-treatment, I meet with my Doctor to review my latest scans. Was I anxious?..Just lay it on me Doc. She says ,"So how are you?" I told her I'm excellent unless she tells me otherwise. She smiles and says," Some tumors are only half to a third of what they were. Some are gone."I am getting excellent response from the drug. Side effects are minimal. Not even worth mentioning.

I am getting better!!!!!!! How do I express how thankful and fortunate I am?

I want to thank all on this board who share their stories, support and love. We are going to win this challenge!

Now excuse me while I cry a little and finish my beer.

rae_rae's picture
rae_rae
Posts: 290
Joined: Oct 2010

Absolutely the best news! Tips a celebratory beer right along with you! I am deeply happy for you Fox! This gives so much hope to many!

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

Have another one with me.

We all know you're special but have you heard whether there are others doing as well as you?

It's no more than I expected but even so I'm going to sleep much sounder tonight after such great news.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

Yes others are doing well. In the earlier phase 1 study some have been off the drug and have had continued response. I was told that one fellow had decided to opt out of the trial because of the committment. The doc reconvinced him to stay and he is now in full recovery.

angec's picture
angec
Posts: 715
Joined: Mar 2012

That sounds great! I wonder how long he has been in recovery.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Fox,

Your story is absolutely incredible. I am SO happy that you are getting such amazing results with MDX. I know it gives hope to a lot of people here and I wish you everything good on your road to recovery! Big hug & kiss.

renal scare 57
Posts: 16
Joined: Feb 2012

Fox,

This why i like this site just when i think im losin my battle someone just says something at the right time to click the lightbulb on to start me rollin again. Thanks for lettin us know how good you done on that drug i do believe im callin the doctor today and askin for it. The only thing it can do it help cure me lol. So i dont see the harm in him turning me down, but Fox I really glad you are doing good. please continue with the updates.
Have a blessed day

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

Its probably a combination of MDX and green bananas, make sure they mention that in the studies.

DogRescuer's picture
DogRescuer
Posts: 52
Joined: Feb 2012

Nah...i don't think it was the green bannanas. It was definitely the combo of beer and MDX! Congrats! Celebrate long and hard!

You've been so supportive of others, it's karma coming back at ya.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

Not likely the bananas. Much more likely the beer and MDX. Probably has to do with keeping my good kidney flushed.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

What a amazing journey. You fought hard for a long long time and you are winning. This is such great news and gives us all hope out here..Thanks so much for sharing your story and all of this valuable info with us..I am keeping a notebook of all the treatments that have helped others here and that might help me too. Congrats to you Fox and thanks for helping us too..

LD

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

Thanx all. Lets stick together. The support is a powerful tool. Here's the thing. I should be giddy as a school girl. But I am emotionally flat. I want to get better but I don't like being teased. Remaining cautiously optimistic. Maybe a feeling of guilt. I know just how unbelievably fortunate I am. But I can't stop thinking about all the people who are going to die because they don't have access to this drug. A friend mentioned to me, "Just think about how the doctors feel knowing they have something that can save thousands of lives and they can't use it." ..So, I better keep improving. I have to help prove that this drug is a wonder drug. Now the pressure of waiting 6 more weeks for my next scan. Remember, FLY.

Fox Loves You!!!

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

Don't let such thoughts get to you. You've been doing everything you possibly could and thereby raising hope for countless others. Just stick to plan and get fully well asap and remember ELF.

alice124's picture
alice124
Posts: 894
Joined: Mar 2012

Fox - I'm crying with you. And tonight--when I get home--John and I are going to click stemware filled with good wine and celebrate with you. (Sorry never liked beer.)

John is tentatively scheduled to begin the MDX1106 and Votrient/Sutent trial on May 10. I only hope he has similar success.

You do MDX1106 justice by educating so many on this board of its existence and successes. Thank you for exposing us to it and for being a BEAM of LIGHT on this board.

Limelife50's picture
Limelife50
Posts: 444
Joined: Nov 2011

I hope that was some expensive beer,I know leading up to path report you had a lot of thoughts going thru your mind from good to not so good and then you ended up with the most awesome news.Well a huge congrats from me !!!!,well enjoy and keep on rockin!!!

angec's picture
angec
Posts: 715
Joined: Mar 2012

Fox.. That is FANTASTIC news! I am so very happy for you that I will drink a beer in your honor!! I HATE beer.. but my hubby tells me to have a Guiness. That is such wonderful news and thank you so much for stepping up to the plate and doing this trial. It could have gone either way for you and the fact that it went the RIGHT way is remarkable!! Please never feel guilty that you are doing well. Just think about the help you are rendering to others. If they see how marvelous this drug works they will have a lot to offer in regards to speeding up the drugs' availability for other people in other Countries. Continued success to you and please, keep smiling!! Big hugs coming your way. This should give faith to others (including you TW) that help is on the way. Never, ever give up!

One question if you don't mind Fox. Is this chemo based?

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I am crying like a baby... Literally... As I type this.... So many others deserve better than me. I have been a caregiver for 35+ years.I take care of others. I watch people who don't deserve to suffer pass away. Today, another classmate is in the obits. Such a sweet girl..... Even had lost 2 husbands!....Believe me, I never expected this to continue...So much to do. But I guess when you go , you don't have to worry anymore...A neighbor recently committed suicide because he couldn't deal with some bad decisions. He will never see his kids have grand children... He doesn't worry anymore... He even hugged me when I got a good report after my surgery....I'm rambling and sorry. But I can share my random thoughts and emotions here....More to come.

Fly.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

No. It is not chemo based in a typical sense. MDX-1106 is a monoclonal antibody. I believe it binds to the molecule that triggers the die off of T-cells. Therefore allowing them to persue the cancer cells. It then eliminates them.......How far can this go?

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

It seems hard to believe that something like only 3% risk undertaking a trial. Maybe I should stay away from words like "undertaker."

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

Fox I am soooooooooo happy for you. I am crying too with joy. What good news. This has made my day!!!

angec's picture
angec
Posts: 715
Joined: Mar 2012

That sounds pretty good and it is working. I wonder if they give trials at sloan Kettering in NY for this. Methodist Hospital told my mom about chemo because she had a positive node and renal vein margin. But i know chemo does not work for this so why posison her with that? Glad things are working out for you. Sorry about your classmate and neighbor. Times are tough for people right now and alot of them are taking their lives. Prayers for everyone. Go ahead and have a good cry, but please don't be sorry that things are good for you. A caregiver of 35 years deserves something good for himself. Just enjoy and don't think about it. Here's a hug for you {{oo}}

Fishknees
Posts: 73
Joined: Mar 2012

Fox I am so glad you are having such great results.

I am new here but I can tell you have contributed so much to everyone.

I understand about the guilt. I almost didn't post about my not having cancer.
I am afraid to answer the phone now for fear that Mayo will call back and say they made a mistake.

Thanks again for your bravery and care for others.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

..OK...now here is the thing....I had my little breakdown. I am over it. Hurray for me!! Now lets hope it is long term. I am no longer a person with cancer. I am someone recovering from cancer.....have to remain positive , right? I mean, it isn't all gone. But going....Now lets focus on taking care of you guys. You better get used to crappy jokes and a weird sense of humor. I am a health care provider, but I'm also a biker so Maybe I can't be trusted. Wait, I'm a golfer, so maybe I lie a little. No wait, I also play guitar. Things can sound pretty good.........In any event.......How yu doin?

j_rod
Posts: 125
Joined: Mar 2012

...Fox - you have been an inspiration to me. And crying....I read this last night and cried...thought about what to say....was so overwhelmed...read it today...and again tears of joy for you. I try for putting myself in another's shoes...but when it comes to a dx like yours....I can not imagine having mets. But then again, I guess my mind might have gone there as a possibility .... and now with you going before everyone with the trial and recovering....recovering from this disease! I have no choice but to noiminate you as the kidney cancer poster boy for courage and bravery and hope. JLY (Jan Loves You.)

j_rod
Posts: 125
Joined: Mar 2012

I just found a website on http://www.ackc.org/kidney-cancer-information/asco-2010-reports/mdx-1106-trial/

It is looking promising. Bristol Meyers bought it in 2009. Studies are very promising. They are preparing for phase II. They are recruting - but as the article says, "they are recruiting 50-60 lung cancer patients even though the research in phase one is more promising for RCC." They put in a blurb that "maybe some pressure from the RCC community might increase the number of RCC participants is needed." They also state that the possible reason for the higher number of recruits for lung cancer patients is a greater - maybe I am interpreting this incorrectly - is the urgency/higher profile of the disease of lung cancer. Correct me if I am wrong in my interpretation of the article but that is what I got from it. I already emailed them with my thoughts. How about it folks? How about an email campaign to Bristol Meyers Squid from all of us?

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

Jan, the strategy behind the recruitment must be primarily driven by considerations of return on investment (in drug research).

The only seriously effective treatment for RCC is surgery (insofar as it's a possible complete cure and nothing else offers that, save in a small %age of cases). Also RCC is far less common than cancers like breast, liver, lung, colorectal all of which have more to gain from drug treatments.

Melanoma is interestingly related to RCC in terms of promising leads for new drugs. The bottom line is that many new ideas which may benefit RCC patients are trialled on the big number cancers first. We don't have to be too cynical either - it's important in trials to have sufficient numbers of subjects to make statistically significant interpretations of results possible and when this can't be achieved quickly in RCC it can be to our benefit if the work is carried out in another malady sooner and, if promising, can then be tried out on RCC.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I like to think that the MDX trial for kidney cancer was chosen because they anticipated good results. This would make it easier to get through the red tape and to market. Who knows how many cancers this can help. A little change here and there.This drug may have many applications. Someone asked me if I bought stock in the company yet. Then they asked why not?....mmmmmm....

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

Would say "EXACTAMUNDO!"

FYI: Bristol is BMY on the NYSE, currently trading at just over $34

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

Decreasingly 'arbitrary' in BMS - with MDX-1106 no way will it be Bristol_Myers (damp) Squibb!!!

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

I am so happy for your progress. Keep us posted. My son will taking the leap into the IL2 word 6/11. Fingers crossed.

tacyarts
Posts: 73
Joined: Apr 2012

I'm new to this site, but these posts are so inspirational. In 2010 I had left kidney removed but mets where found in lungs in nov 2011. I just finished the il-2 with no help. My next stage in the fight is a trial with mdx 1106 and also an oral. The posts that i have read are uplifting and i sure appreciate them. Good luck and God bless all of you, keep up the good fight!!

tacyarts
Posts: 73
Joined: Apr 2012

I'm new to this site, but these posts are so inspirational. In 2010 I had left kidney removed but mets where found in lungs in nov 2011. I just finished the il-2 with no help. My next stage in the fight is a trial with mdx 1106 and also an oral. The posts that i have read are uplifting and i sure appreciate them. Good luck and God bless all of you, keep up the good fight!!

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I may not be cured......Yet...... But considering my prognosis........I am also inspired......I begged for IL-2.,,Was given the option of MDX-1106...and I am doing great!!
I hope to find someone else also benefiting from this drug. ..I hope EVERYONE can benefit from this drug.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I may not be cured......Yet...... But considering my prognosis........I am also inspired......I begged for IL-2.,,Was given the option of MDX-1106...and I am doing great!!
I hope to find someone else also benefiting from this drug. ..I hope EVERYONE can benefit from this drug.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I stuttered.

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

Probably a side effect of MDX, better report it.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

...Here's the thing....I am so fortunate to have the opportunity to be on MDX......Especially since I had been diagnosed with Basal Cell Ca also a couple weeks ago. The good news is the medication has reduced the lesion and sugery has eliminated it. But today, I also find that I have melanoma....sheesh....Now to see another oncologist, have it removed and await for what's next....I have most of June and early July booked for motorcycle trips. Just can't avoid the sun. I hope the MDX keeps on working.....

jhsu's picture
jhsu
Posts: 80
Joined: Sep 2009

As far as I know, MDX works on melanoma as well. So, there you go...

Jon

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

Just not a kidney stone and lay off the birds!

Are you planning to become the poster boy for all forms of cancer?! I imagine it's yet more ground-breaking and pretty unlucky to have both basal cell and melanoma (do they both have the same supposed cause?) on top of RCC and all.

Anyway, Jon's right about the melanoma tie-up. At least you're just the man to handle adversity even without your Wife and Daughter and the entire team here pulling for you. Keep remembering ELF!

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

I think they are having me see a plastic surgeon ( I guess he takes credit cards) in a couple weeks. I am not remotely a hypochondriac but sure do have alot of surgeries. My poor wife. They have removed so many parts of me my wife tells me I'm not half the man I used to be. Says that when she cremates me, she'll just toss me on the barbecue and put me in a medicine bottle. Evidently, I've had too much sun exposure over the years. What do you expect from a light blonde? My hair is more brownish now, but that may just be toasted...anyone with a burka ?sp. for sale?

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

You'd look too much like the Reaper in a burka...on second thought maybe you'd like that hmmmm?

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

You made a smart move Fox in passing up the Votrient trial and going for the MDX one.

Ironically, though, now there's someone (per KIDNEY-ONC) who is doing very well on the combination of MDX-1106 with Votrient! I'm going to keep an eye on how he progresses. From what I gather he's the first to be on MDX-1106 and Votrient at the same time, the theory being that they'll work synergistically and attack the cancer on the two fronts - anti-PD1 monoclonal antibody and anti-angiogenic. He's previously been on Sutent last Fall when he put on 30 lbs but since then he's now lost 35 lbs. He's chronicling his progress after the fashion of the brilliant writing by Chris Battle who had to decide between Sutent, IL2 and MDX-1106 just over a year ago, as narrated so absorbingly in the Cancer Chronicles at:

http://kidneycancerchronicles.com/is-mdx-1106-the-next-big-thing-for-kidney-cancer/

Like you, Chris Lawing is blond and radiant! I bet his nurse also says "You are my sunshine" too!? The similarities probably don't end there. Another patient has just compared notes - she was on Votrient and is now on MDX-1106 and says she had many of the side-effects of Votrient but next to none on MDX (just a little fatigue). She is speculating that her excellent latest scans are due to the MDX rather than the Votrient and shares the view that things are really looking up.

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

.Have to admit,...I got lucky. I think my only side effect is that I can get pretty tired. But like you Wedgie, I can probably do more feeling crappy than most do feeling well. I am still so active, I don't think I would want an anti- angiogenic yet,since the MDX is working so well. My response over the past several months is gonna make some one rich. And that is OK with me. I can imagine how effective adding some votrient will be for alot of people. Super concept.....Can you imagine if this is the breakthrough everyone wants? Awesome!!!

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

Awesome is the only word for it.

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

EFFING AWESOME!!! works too

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I am so happy for you (((( Fox))))) and I will remember MDX-1106!!

alice124's picture
alice124
Posts: 894
Joined: Mar 2012

Fox - Just want you to know I'm pulling for a fantastic report tommorrow. Know you're in my thoughts and prayers.

Tex - If you're reading this, ditto. I know you mentioned end of the month for your scan but wasn't sure of exact date.

P.S. You both may want to start a new thread because we'll all be racing to read!

foxhd's picture
foxhd
Posts: 2193
Joined: Oct 2011

Yes. Tomorrow starts MDX part 4. I have my blood work, infusion and scan results tomorrow. What a trip. Thanks for your support Alice. still can't comprehend all of this at times.

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

I guess we all know that feeling. Let's hope MDX part 4 is going to be even more pleasing than earlier chapters.

Alice, I've had my CT brought forward and it's now to be on Friday morning. As soon as it's over (plus a few minutes in case I have an adverse reaction to the dye) I'll be driving 500 miles, taking my Wife to see her cousin in London who we hope will still be alive on Saturday. He has had long-term malignant melanoma metastasised to liver and lately to his brain so he's undergone WBRT and was to have CyberKnife, I believe, but that has been called off due to seizures.

Fox is moving steadily in the right direction. I may be about to go the opposite way, in which case my habitual bullishness may take a bit of a knock but, like John, I'll deal with that the best way I can.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I am wishing the best for you, your wife and her cousin. You and your family have and are going though so much. I am not the best at comforting people but I want you to know that I am thinking about all of you and hoping things come out well (((( Tex & Family )))))
~Judy~

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

Fox & TW,

Being the prognosticator of all things worldly that I am, I foresee nothing but good reports for you both in the near future. MDX and MAARS are working their magic, that's my story and I'm sticking to it!

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