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.

 

 

Just to be Clear. I didn't fully recover after a week. I started to feel myself. Meaning my mind wasn't scrambled. I was still very tired and not able to get up and do much of anything. I was able to get up and get my girl ready for school and on the school bus. Then come in the house and take a nap. I could not stand up for more than 15 or 20 mins without my hands swelling. The first few days home I did nothing but sleep. I think the recovery was easier the second and third time around. Because I knew what to expect. I can't say which treatment was the hardest. Each had it's own problems. You did it once you got it this time. Best wishes and prayers headed your way!

Nancy    

garym said:

I believe you are right!!!

If its hard on you it has to be hard on the mets, I can see them peeling away layer by layer and they don't like pizza and beer so no recuperation for them afterwards.  YOU ARE GOING TO ROCK!!!

Fox, you are one tuff Hombre..!   And glad to hear all that suffering is paying off..!!   Just think of the celebration you will have on Turkey day this year..!!  Go man Go..!!  

Ron 

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.

 

 

You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

This is where I am.

I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

Best wishes,

Todd

todd121 said:

Hi

You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

This is where I am.

I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

Best wishes,

Todd

Todd,

I don't want to pour salt on a wound, but please explain to me how else you think it should work?  You say, "we all deserve to be healthy", a sentiment we all share around here.  But how can we be healthy if we don't eat healthy?  Do you really think that just taking an unproven drug (for adjuvent therapy) can restore one's health?  How, exactly, does that work?

Tex rightly suggests some more exercise. But I believe that if improper nutrition is dragging your body (and mind) down more exercise (alone) will be mostly futile.  I would rather put the primary emphasis on getting your diet right to begin with.  I am sure that advice is not a surprise coming from me.

Fatigue is adding to your depression (no matter what the actual source might be).  But you can address fatigue by diet and exercise.

If you want to feel (and really be) healthy you do have to do more than remaining complacent in your old habits.  If the fear of graduating to stage IV does not provide adequate motivation - then why are you still in that clinical trial?  Why did you even start on it in the first place?

srbelle1 said:

Todd:
i am reasonably new to

Todd:

i am reasonably new to this board and am here because my husband has kidney cancer.

if it does not offend you, may I ask your age? The more I learn about this disease, the more I realize how past habits impact and have made some changes in my own lifestyle.

drinking too much after having a stage 3 diagnosis sounds odd to me; without really dating myself, I will say that we are part of the "me" generation, if it feels good, do it. You probably get my drift. 

My husband has struggles with cigarettes and I finally blew up, let all of his family and friends know so that he understood how outraged we are in fighting for him while he selfishly smoked, KNOWING what effect smoking has on kidney cancer.

i mean you no disrespect but why would you drink too much? 

Sarah

Please don't run away and hide now Todd - it's good to have you looking in again.  I stand by what I said, but I didn't envisage you getting such an instant drubbing from all quarters

I hope you'll continue to contribute here but I do also sincerely hope that you'll give due thought to the messages you're getting and that, even allowing for our hobby-horses, you'll believe we genuinely have your best interests at heart.

foxhd said:

dosage

Ange

Posts: 657 Joined: Jul 2012

Aug 04, 2013 - 2:56 pm Welcome back I am so glad that you are back Fox and you got a free chemical peel too. Rest up. Here's what I found about the IL-2 dosage. It also has a built-in calculator. http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203 Metastatic Renal Cell Carcinoma, Metastatic Melanoma 600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications

 

, Here is a repost from Alexandra.

Enjoy your ride and good luck hope you are up to toughing out yet another round.

foxhd said:

dosage

Ange

Posts: 657 Joined: Jul 2012

Aug 04, 2013 - 2:56 pm Welcome back I am so glad that you are back Fox and you got a free chemical peel too. Rest up. Here's what I found about the IL-2 dosage. It also has a built-in calculator. http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203 Metastatic Renal Cell Carcinoma, Metastatic Melanoma 600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications

 

, Here is a repost from Alexandra.

Thanks Fox! It sounds like an awful lot! Wow! No wonder so many reactions!  Overload, but well worth it!  I feel so sory for Alex too. I read she has recently had a recurrence! It stinks!  I hope she gets the treatment she needs sooner than later!  You all are an inspiration to me! I have grown immensely in many ways, just from reading your posts.  Everyone take care and keep living!

Todd.... have you seen the book called "Saving Normal"?  It is interesting...  All my best!

Limelife50 said:

Diet

I buy those 2 pound bags of ready to eat lettuce from Sams Club i also get me eggs ham and turkey and other veggies and then i put it all together to make salads to eat for my lunch during the week.I also bike any where from 50 to 100 miles a week and i still have all of my hair and very little if any grey hair and i am 52  years of age and sorry but  considering the three cancer surgeries i have endured i still look better than most guys my age.Now for the dark side i also just love that Miller Lite beer for which i usually drink maybe anywhere from a 12 pack to at times a case a week and what can i say i am pretty Damm Happy.I think sometimes its all about perspective and how we veiw ourselfs.Hey Todd just a quick question have you ever seen the movie called Shawshank Redemption if so their is a quote Morgan Freeman makes during that movie,well i will let you figure that out.

I did see the movie. Can't remember the quote.

With regards to hair...mine's been gone since I was in my early 20's. I saved a heck of a lot of money on shampoo and haircuts.

I have thought about getting a bike. I think that needs to happen soon. I live in a beautiful hilly area and there's a nice place to bike nearby.

To everybody else that were giving me heck, I've gone on 3 walks in the last 2 days and I joined the gym right next to my office today so it's convenient to stop in for an hour after work a few days a week. My dog really liked the walks. Can exercise work almost immediately? Because I feel better already. We've had gorgeous weather here.

I decided it was that or anti-depressants. The box of anti-depressants is sitting on my coffee table to remind me to decide what I want to do: take pills, or eat well and exercise.

Todd