I'm going back in!

Shrinking! What a tremendous sound to that word!!!! You still make smiles Fox!

Couldn't be happier with the news. Sorry you have to return to the hell chamber though. Wouldn't it be nice if they could just put you out for the duration?

Anyway, we'll be with you vicariously and sending back to you all that good karma you so graciously give to us. You know we love you!

There is no such thing as "party too much". Go nuts! I'm not good at raking leaves, but if you need an experienced leaf blower, PM me.

Lov ya!

Proud of you Fox! You've got a strong constitution:)

Will you start a new "Live from the Cuckoo's nest" thread while you're in there?  I need something to motivate me while I'm in the hospital too.

Best of luck to you, and best wishes xoxo

Way to go Fox! I'm so happy for you. You'll do well on the next 2 cycles. You are obviously a great candidate for immunotherapy. 

I'll be pulling for you.

--David

Go Get em Tiger!  Bring back some great news!  God knows we all need it!

foxhd said:

I AM the warrior!

But not to seem invincible, I will admit that I am scared. IL-2 is hard. Passing away is not in my plan. But I do hate thinking about how sick I will become with IL-2. But you know what? Bring it on. Ask Tex if he would trade places with me. We NEED to fight because only the accumulation of data will find the solution. I am amazed at the amount of people who won't attempt a clinical trial. Try that first. Then you are part of the solution. Not a byproduct. I'll tell you that trials are available. Search them out. Accept approved drugs only when necesary. They will always be there but so far they haven't become the cure.

Fox, you ARE the warrior!  And now that you know what to expect, it won't be so bad. (Yeah, listen to me...I've never gone through it.  Easy for me to say, huh?)  You have done it before, and while it wasn't fun...it sure as hell wasn't fatal.  You are a hero in my eyes and I say a prayer for you every day.  You are the man with the machete, cutting through the jungle, in order that the rest of us will have a clearer path to travel.  Hugs!

NanaLou said:

Great News!!

I am so glad to hear this news. I know you are dreading it. But it doesn't last that long. You just got to make it through it. When I went in I would be focusing on the things I would be doing a week out of the hospital. That is about the time I started to feel normal again. If you keep this up You will get to go back a thrid time like me!! It is rough stuff. But I'd do it again in a heartbeat. Keep it up. Prayers headed your way.    

Nancy, no-one could have failed to be impressed with the way you handled IL2 and to be utterly delighted with how it's treated you - particularly with your having, like me, a very unfavourable high sarcomatoid component. 

Likewise, we were knocked out by the way John took it on (even allowing for the inestimable asset of having the lovely Alice at his side).

However, true to what we've come to expect, what a display of courage by Fox!!!  This is a strong man who says he was "broken" by his earlier experience on IL2 and yet he's got the grit to go back for more! He's a tough guy and still he's not shy of saying he's scared!  No wonder we're the crew who are changing the numbers.

As Fox says, we need folks to commit themselves to trials (when appropriate - so far all the adjuvant trials looking at preventing recurrence have been an almost complete waste, other than that if they hadn't been tried we wouldn't have known!!) because it's a major source of discovery and progress, albeit far, far too slow.  I'm working on trying to get back to a status that would enable me to get into a trial, should there ever be one that accepts a heavily metastatic sarcomatoid chromophobe case who's now had to be taken out of a first line TKI treatment.

Here's to Fox getting a total response to HD IL2 - if anyone ever earnt the right to it, it must surely be him.

foxhd said:

only moderate panic

Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

. It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

 

 

I am a big believer in trials. They are our way forward, no doubt. BUT I have been told numerous times by my insurance company that they will not cover trials. Now, how does someone who is not independently wealthy get involved in trials without insurance?

I know if you can find a trial at NIH, they cover everything, but they are an exception. Living in Mississippi like I do, I'll have to travel to participate in any trial. I'm not one to give in to many things but this is one time I'm close to saying enough. I made myself a promise when this all started 2 years ago that I would not leave my wife bankrupt. I enjoy life and want to keep on living but I will keep that promise.

I had to go out of network (insurance) for IL2 treatment. Even though we had the treatment reclassified as in-network, just about every charge that came through was billed at the out-of-network rate and we had to appeal all of them. 5 months after treatment we are still dealing with incorrect charges. This takes a toll mentally and emotionally. Money isn't everything, I totally get that, but it takes money to exist in this world.

I don't mean for this to sound negative or like an attack on trials, it's just another viewpoint. I encourage everyone to participate in trials. I still keep up with what's out there. I wish I could participate.

Fox, I hope I didn't rain on your parade. That's the last thing I would want to do. I'm so very happy you are getting another round of IL2. You'll do well. Nancy is showing you the way forward.

By the way, I'm back putting in the miles on my bike and enjoying life. My next scan is on Thursday. I'll move forward from there!

David