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Finished IL-2 treatments!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

It's finally over. I'm home after completing my 4th round of IL-2. I'll say it again, "This has been the hardest thing I've EVER had to go through." All of my muscle has wasted away. I've lost the fluid retention and I'm nothing but wrinkles. The world of psychosis is someplace I never want to go to again. It has beat the living crap out of me. So, let's surmize the cancer is running scared with no where to hide. My kidney shut down for 2 days and that is a strange feeling not having an urge to pee. This time I developed some cardiac complications and my enzymes were going off the chart. Let's also hope I've had no cardiac damage. For those unfamiliar with my story, I've been in tremendous shape for 61. Life history of weight training and running. Now I can barely get up from a chair. Can't lift my arms over my head. I had no skin  redness or skin peeling this time. But dryness is extreme. I walk and leave a cloud of dust in my path like Pig Pen in Charlie Brown. Everything hurts. My knee is swollen and hurts just as if I've had major knee surgery. It barely supports me. If I never vomit or have diarrhea again it will be too soon.

The good news is that I will not have to do this again. I don't know if I could. I see my Dr. wednesday and will take a look at my blood work. Scans in probably 6 weeks after it's had it's chance to do it's thing. So I'll have a long deserved break. It will feel good. I wonder when I will be able to begin exercising? It won't be for a while. That I know. For those that have endured this, we have our own exclusive club. For anyone who is going to do this, I pray it will be easier for you.

For almost everyone the wait for treatment or scans can drive you crazy. The fear of disease progression. But I am in no hurry for scan results or next treatment plan. I need down time. I will have to even limit my computer time. Total veg out. I just don't want to know. I don't even want to answer the phone. I think I deserve a nice long sabatical. I'll get my a$$ back in gear when it's time. Thanks for listening. This site is still the best for getting concerns and worries off our chests. I love you all. I pray we all do well. Don't ever give up. Fox.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Well, Foxy, so glad it is over! It sounds horriffic!  When I see all of the struggles everyone goes through with cancer, I often wonder why it has to be so rough! Mutilate, burn, freeze, poison, like if they aren't already going through enough! There just has to be a better way, a better answer, a simplier answer to this! One day, just one day, the right person will stumble upon it, if it isn't already out there, held back by greed!  

 

But, in, any case... we move forward! You have had two wonderful opportunites to beat this, and there is more in the mix if needed! I cried when i read your post, because it just seems unreal to suffer so much! But, I hope to cry tears of joy in six weeks time! So, now, you rest and take a sabatical.  Do things you enjoy!  I am hoping you will recover faster this time and with no permanent side affects to mention! We love you Fox and are so proud of you!  Feel better, my friend, have a beer for me as soon as you are able! Play that guitar, ride the cycle, eat pizza and just enjoy each day!

 

srbelle1
Posts: 123
Joined: Jul 2013

Hoping and praying for your rapid recovery and for a good result in 6 weeks. 

Sarah

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

Take that well deserved rest my friend.  As always, you are an inspiration and a living example of positive attitude, energy, and karma, I have little doubt what will be reported in six weeks. Pizza and beer all around!!!  ELY

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Welcome back Fox! I am so glad this ordeal is over for you at last, describing it as hard sounds like an  understatement!! You always amaze me! No matter what you go through, and all the suffering your body endures, nothing ever breaks that indomitable spirit of yours! Our prayers for you are constant! Heal well, take care of yourself!

 

Djinnie xx

danbren2's picture
danbren2
Posts: 181
Joined: May 2013

Fox,

    You are just amazing for what you have had to endure! Get some well deserved rest and I wish and pray for a speedy recovery with nothing but good news!

         Love and prayers for a healthy you!

         Brenda

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Fox, you Da Man! I really can't believe that another human being can subject anyone to this barbaric treatment. I did 2 rounds and I thank God, the Onc. didn't recommend any more. That was enough for me. And I particularly enjoy your take on the peeling, with the statement " I walk and leave a cloud of dust in my path like Pig Pen in Charlie Brown"! It's perfect and Sooo true! My wife had the vacuum stationed just outside of the bath, so that each evening I took a shower, and disrobed, she could easily vacuum the fallout. Hang in there. We're all here for ya, and it sounds like your scans will be more encouraging than mine were.  Gary

BDS's picture
BDS
Posts: 94
Joined: Aug 2012

“The cancer is running scared with nowhere to hide”.

 

Give it HELL Fox and Godspeed. - BDS

 

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Hey Fox,

I thought about you all last week. I would say it's Wednesday, he's well into it by now and I know he's feeling awful. I was sending good karma your way all week. Enjoy your "no treatment" time, I understand completely. Veg out and rest up!

11 days on Votrient and I'm breathing a lot better. I hope that means something.

David

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

I echo BDS.. Glad it is now over. Ron

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

it has been a tough fight, let te peace begin.

Alexandra's picture
Alexandra
Posts: 1205
Joined: Jul 2012

Dear Fox,

After everything you've been through in the last few months you deserve any kind of R&R you desire. And all the beer and pizza you can handle. And much-much more.

I hope in 6 weeks your scans come back as clear as crystal. And the IL-2 treatment and nasty side effects will be a fuzzy bad memory.

Your long-time admirer,

Alexandra

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I've already told you...you're my HERO.  I'm against using that word for every Tom, Dick, and Harry, but I will use it for a FOX.  Relax, chill out and take a well deserved sabbatical from all things RCC.  You ARE the man!  You ARE my HERO.  Hugs my friend.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

... This is really good news! You are a inspiration to me. If I ever have to do down that road, I want to fight like a fox!! Rest, relax and do whatever the heCK you want. You've earned it.

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

You are the prime example of "Take No Prisoners!"

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

 

Thrilled it’s done. Now we anxiously wait for the good news as  you  take some well deserved R&R. You’ve endured the worst treatment out there.  I don’t think anyone who has undergone IL-2 or watched someone they love endure IL-2 would argue that point. But you’ll recover because you are you. You’ll get stronger, add that bounce to your step,  and say “bring it on” to whatever is in your future.  That’s why we love you Fox. 

Last Thursday we met with John’s doc. During our visit, John asked him how many people remained in his arm of the trial (Nivolumab/Votrient).Dr. Hammers response,  as specific as always, was “not many” quickly followed by “you’re my best responder.” For those of you unfamiliar, John has been in the trial for 17 months and seen 58% shrinkage followed by stability.  As he was saying this, Dr. Hammers was flipping through John’s chart recalling John’s IL2 experience. John underwent the IL2 regime prior to beginning the trial with only a mixed response to the IL2 at scan time. It could have been my imagination but I could almost see Dr. Hammers analytical mind connecting John’s IL2 experience with his sustained response.  I’m betting the hell you’ve endured over the past two months will prove to be time and pain well spent.

 

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I'm glad you're done and hoping for great scans in a few weeks!

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

So happy it's over - now time to rest. You (and everyone here) are always in my thoughts and prayers. I had a slice of pizza tonight in your honor (saved the beer for you).

 

All my best,

Rae

todd121
Posts: 557
Joined: Dec 2012

You deserve the RR. Really look forward to your posts and wishing you the best fox.

Todd

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Enjoy the down time Fox. It's well deserved.

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

I can't imangine how elated you are to be done with this for the moment. You have endured so much, and I can't tell you what an insiration you have been to all of us. 

Enjoy rediscovering how "you" feel, and not the drugs.

In 3 weeks, we start talking about how I'm reacting to the votrient.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

We do what we got to do. Finally coming around. Starting to feel ok, but weak and tired. All my muscle is gone. Went from 203 to 176 pounds. I've got a long way back to get fit again. And I'm not ready to even start. Maybe another week. My mind has cleared so that is good. Still a sense of being chilled to the bone. Totally amazing. Too bad there is no correlation to effectiveness and how badly it treats the rest of the body. I also get sharp,tearing pains in my arms at times when I move. Like muscle ripping. I don't think I have heard of anyone else who has had such a difficult reaction to the IL-2. Oh yeah, Blood work shows no permanent damage to my heart. Enzymes have returned to normal along with muscle enzymes. I resume zometa next week. Fortunately I've had no bone pain, so that is good. What a trip. Funny thing is everyone who sees me, even at the cancer center says, "You are looking great." I laugh. They don't see my muscled arms reduced to wrinkly toothpicks. They look like the arms of an anorexic bed bound 90 yo. Incredible. My doctor tells me everything will come back and I believe her. I'm patient. And motivated. Not for a moment do I think I won't do well. Maybe not cured, but stable for life. Considering how many tumors I had 2 years ago, and now only a few have remained. Stubborn but persistant. But so am I.

I do hope that I am able to display the take no prisoners approach to fighting this crappy disease. The fear and helplessness many feel after diagnosis must be replaced with agression. There is no room for doubt. Find the proper care team. Agree with the plan of care and attack. It is your life. Your family needs you. I hope everyone here dies from old age. I love you all. Fox.

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Well you did the really hard part.. now it is up to the drugs to do their part...  Hope you are back to your old body soon..  I did have pizza and water last Friday in your honor..!  First time I had pizza in well over a year.. tasty..!!    Too bad the weather won;t be nice for a bike ride... but somehow that will happen too..!!   Your take no prisioner approach has always inspired me from day one...  Nice to see you here again..!

Ron - I don't want a pickle... jus wanna ride my motor sickle... and I don't wanna die... jus wanna ride my motor... sy... cle....

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Hey Fox,

Good to see that the haze is clearing up! My IL2 doc told me 5 weeks after treatment to feel good again. He was pretty close with that figure.

I remember looking at my arms and legs after treatment and thinking, what the hell happened to my muscles? I was in shock, but it will all come back...to some degree! I just looked and I was doing 2 mile walks, 3 weeks after treatment and I was back on the bike for my first post-IL2 ride of 10 whopping miles :) one month after my last treatment. (Yeah, I'm a workout record nerd!) However, I only had one round of IL2 while you've had 2, but hopefully the 5 week estimate will be good for you too.

Take care, David

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Ron, I had pizza last night. Yum! Beer to come soon. David, amazing ,isn't it? I've had a couple walks. My hips give out easily. But I'll keep at it. I'm a workout nerd also. I want to jog and get my muscles back. I think 5 weeks may be a fair estimate. I can  sleep all night and several hours a day. All I think is WOW! Had my a$$ kicked.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I'm so glad to see you back on the forum and sounding like your old self, kinda sorta.  Can't wait to see those arms all muscled back up.  You'll have to post a new photo when your muscles start popping back under your skin!  You are still my hero.  Right now I'm being a bit of (as my Mammaw would have said) a panty-waist...so time to pull on my big girl granny panties and take care of business, huh?

izzycohen
Posts: 64
Joined: Aug 2013

You are an inspiration to us "lesser" club members.  You are exactly right about a special membership for those who have been through what you have experienced.  Thinking of and praying for you in Chicagoland.

 

Izzy

I am alive
Posts: 219
Joined: Jul 2012

Amen, brother. You did it! Congratulations and welcome back to the pack. We missed you. But go ahead and take it easy. Enjoy your vacay from the forum. I wander off quite a bit myself. Whatever you need to do, when you need it do it -  that's how to surf this baby.   Hugs,

Peg

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

for all the support and encouragement. For a while there I didn't know what month, year, or who the president was. All behind me. I'll keep up with the walks and will begin strengthening shortly. I need to continue demonstrating committment toward fighting RCC. It takes effort. I just read that even when the IL-2 works on soft tissue tumors, it isn't as effective on bone mets. That sux. I guess the fight has more rounds to go. Good thing I have got the time.

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

You are the man!  Just know that anything else from here on out is a piece of cake compared to the IL-2.  You can do anything! As for me, my liver is taking a break from the Votrient.  Don't know what is next for me.  But I am feeling amazing!  Enjoy your recovery time.

Lou

Jojo61's picture
Jojo61
Posts: 365
Joined: Oct 2013

You defiitely are an inspiration! You are a poster model for strength, resilience and positive attitude!

Great role model for us all. Keep kicking Big C's A$$ !!!

Take care!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Can't win in this war if we don't fight. I've been limited even in walking. Legs tire so much and hips give out. Feet feel like I'm walking barefoot on hot pavement. But I'm going out after I type this. Probably 2 miles. Began first weight training session this morning. Strength is amazingly low. Mostly just went through the routine with minimal weights. Almost embarassing compared to what I used to do just for maintenance. Still down over 20 pounds. But I'll keep at it. Our bodies are resilient. They need to be reintroduced to what we have considered our "normal". There is a built in memory and if we work at what we were used to, it recovers pretty well. If I was not an exerciser, I might be closer to normal. But I don't accept that. It is sort of like the rustiness one gets after putting down the guitar or piano for a year or so. It seems unrecoverable. But surprisingly, stick to it tiveness will prevail. It's our most important job not to give up and accept defeat. We don't bounce back without hard work. and I'm up for it. This is proving more difficult than recovering from surgery. Less pain, but much harder. So, I understand it will take longer than anticipated. Discouraged? Nope. Surprised, for sure.  It will be quite awhile before I can jog again. But the day is coming. (it keeps my buns tight) so it's gotta be in the program. Stay tough everyone. We all do this together.

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