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HD IL-2 scheduled for February

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

So my first treatment since my September nephrectomy will be HD IL2 at UVa's Emily Couric Cancer Center.  My doc was a pioneer in this procedure and this center does several patients every week so I was glad to hear that I'm getting an experienced team.  I've got four or five small lung mets (largest 1 cm) to deal with.

Feb 24 is my intake date but in the meantime I've got another scan, a brain MRI and a stress test to do.  I've read many of the personal stories about IL2 and I think I am ready for this as my first attempt to kick this cancer in the butt.

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

Several members here have been through IL2 treatments and I'm sure you'll be hearing from them.  I have not, but wanted to wish you the very best.

KICK CANCER'S ASS,

Gary

DMike's picture
DMike
Posts: 244
Joined: Nov 2011

Hi Thaxter,

I had IL-2 treatment last year as my first treatment after a partial nephrectomy. Unfortunately, it did not work for me but I'm so happy I went for it. I see no reason not to do it if you're healthy enough to deal with it. 

I'm proof that a large number of doses does not ensure success. I took 11 of 14 in round 1 and 13 of 14 in round 2. So, don't stress out if you have to miss a dose.

It's tough but you can do it. One of the hardest things for me was the boredom of being in the bed all day but your mind is scrambled so you don't really feel like doing anything. Hopefully, you'll have a family member staying with you. My wife was there the entire time and I hate to think of undergoing IL2 treatment without someone there to help with getting to the bathroom, etc.

Go ahead and start using lotion all over your body now. You're going to peel from head to toe. Just keep applying the lotion.

I know it's stressful right now with all of the qualifying tests. Keep fighting! There's tons of good info here and on SP, just search for IL2. I read them all before I went in.

As I said before, you can do it!

David

 

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

Do I get regular food? I know I may not feel like eathing.  Am I constantly tethered to an IV and have to ring for a nurse to use the bathroom--that was real frustrating about my nephrectomy.  The last two days I was perfectly able to get out of bed and pee but they had an alarm if I did that. And with all the fluid they were putting in me I'd get up three times in the middle of the night once the catheter was removed.

This sounds silly, but I might bring a mandolin or guitar to pass the time--is that at all possible?  

I hope my wife doesn't have to be there 24/7 for five days, but I'm sure she would if needed.  If I bring an iPad will I feel like watching Netflix shows?

foxhd's picture
foxhd
Posts: 2234
Joined: Oct 2011

Yes you should be able to eat whatever you want. Yale has a pick and choose menu. I did try to eat a couple times but couldn't. Even now I have a aversion for the foods I chose. The look and smell makes me sick to my stomach. Still. And I choose some of my favorite foods.

I could not support myself after a couple days and could not get to the toilet 10 feet away. There is always some one to help you get to the bathroom.

I also thought about bringing a guitar or mandolin. Glad I didn't. Like I said, I couldn't even watch tv. I brought my mp3 player and could not listen to it. I brought a couple magazines and couldn't even look at them. By my 4th week of treatment I knew what my limitations would be. All I brought was what I wore. I couldn't wait to throw the clothes in the laundry as soon as I got home. Maybe I couldn't watch tv because I was seeing things anyway.

And yes, you are constantly hooked up to an IV or maybe 3 or 4 of them. Il-2 will not be the only drug you get. First there is a constant IV drip to increase your fluids to avert a drop in BP. There are meds for diarrhea, meds for nausea, electrolytes, and more. Plenty of pills too. I bet I had as many as 10-15 pills daily.

You may not have to worry about getting up to go to the bathroom after a couple days anyway. My (remaining) kidney shut down and I didn't even get an urge to pee. And that was after  15 pounds of fluid was pumped into me. That lasted at least a couple days. Strange sensation. Or lack of sensation.

Il-2 was a very difficult thing for me. But the good news is that I haven't talked to anyone else who got as sick as me. So you should do better.

Most amazing to me was that I went in believing that I could handle anything they threw at me. I was strong. I was mentally prepared. I thought I knew what to expect. And I thought I was tough. After each session, I knew much more as to what to expect. And yet it was harder. I broke down and cried like a baby many times. It was quite traumatic emotionally. What a trip. But as I have said, if they wanted me to have another week of treatment, I would be there in a heartbeat.

I hope that you do well with your treatments and ask yourself, What kind of sissy was Fox anyway.

foxhd's picture
foxhd
Posts: 2234
Joined: Oct 2011

And I'm an example of not getting alot of doses but I have had a response. And unlike David, I didn't want anyone there with me. I did not want even my wife to see me as sick as I was. I couldn't eat, sleep or even watch TV. I couldn't even walk after a couple days of the drug. Believe me, I was sick. It makes for a long 5-6 days in the hospital. But go in with full enthusiasm. If they told me they wanted to do another week, I would be there in a minute. It can be brutal, but some people don't have much difficulty with it. One guy I knew at the hospital had just finished his treatments. He had only some skin dryness. He got up and showered daily. Dressed in street clothes and sat outdoors most of the day. He was back at the gym in less than a week. I hope to see him sometime and find out how he did. For me, it took about 2.5 months before regaining my senses. I  found out that I don't like being insane. My wife said I walked around the house for a month looking like a deer caught in headlights. But now that I have recovered, I am exercising full steam and jogging. I have not felt better in at least a couple years. I hope I can say the same thing after my April scans. So go in full steam ahead. Good luck. I don't mean to dissuade you or scare you. But I know you want the truth. You can read my postings from July on. I tried to give a running dialogue while I could.

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

Whew, I had already read some of your older posts.  I asked the doc specifically about psychosis and he said he rarely (or maybe never) saw that and they admit 4 patients a week. He also said that most patients might be well enough to go back to work after a week following the last treatment.  Actually I answered that I have the luxury of being able to go on sick leave from February to November with full pay.  Those 1500 hours are finally going to come in handy.  Plus I'm retiring whenever it's most advantageous sometime this year.  I've been eligible to retire since 55 and 4 months or nine years ago. 

I saw the posts about the Boston patients conference but that turns out to be the last day of my second stay in the hospital--Mar 14.  Maybe my goal would be to have a beer on St. Paddy's Day.

 

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

Some of my musician friends are asking me whether medical marijuana would be useful during IL2.  I think Virgina has a pretty strict law, but it is legal for cancer and glaucoma.  Don't know how you get it though.

foxhd's picture
foxhd
Posts: 2234
Joined: Oct 2011

You say you are a muscian and you can't get MJ?  What am I missing here?  I'll tell you that even if I wanted to, I couldn't have tolerated being more messed up in the head. It would not have helped me then. Afterwards..., well,....what was I talking about? Pass the cookies please.

DMike's picture
DMike
Posts: 244
Joined: Nov 2011

Yes, you will be constantly attached to IVs and EKG monitors. My wife and I worked out a routine to unhook the leads and dash to the bathroom. Sometimes the dash wasn't fast enough. Your urine output will decline dramatically. They had me measure fluid input and output, another thing that my wife helped with.

Food was okay the first day but after that I ate very little. I just didn't want it. Like Fox said, the thought of some of that stuff makes me sick today.

It's hard to describe everything in a way someone can understand it. You're pretty well screwed up for 5 days and I don't think MJ will help any with that :)

Even though it didn't work for me, if they gave me another shot with a chance of it working, I'd be there tomorrow.

Good Luck.

David

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

The only thing I can add is:  Make sure your nurse carries a syringe of Demerol around to help with the rigors, they can hit pretty suddenly... and if you have someone with you, make sure they know where the warm blankets are kept.

nyisles's picture
nyisles
Posts: 27
Joined: Mar 2013

It is strange how I came on this board nearly a year ago asking all sorts of questions and now I get to give input to someone else based on my experience.  Sounds like you have experienced people which is very important.  My oncologist was also one of the docs who first suggested use of IL-2 to treat kidney cancer and I was treated at the top IL-2 hospital in the US (Beth Israel Deaconess Medical Center in Boston, MA).  IL-2 messes with you physcially and mentally.  I could write for hours about my experiences but many have summed it up well.  Yes, IL-2 made me very sick and yes IL-2 caused kidney failure in my only kidney (which fully recovered with no damage thank God) and yes I was sent to the ICU for 24 hours with what my doc called the "perfect storm of complications".  Yet...as Fox said...if they called me for more I would get it in a heartbeat.  Before IL-2 I was beat up, sick, fluid in my lungs, fevers, unable to walk much without being out of breath, and my life was spent sitting or laying down.  The docs said I had an "angry" cancer.  IL-2 gave me a life back.  Not sure if it is temporary or not, but right now I feel normal again.  With the exception of some minor pain in my ribs (from bone metastesis which has gotten MUCH better with IL-2), I feel like I don't have cancer.  Right now I can eat, drink and be merry.....and I am enjoying every second because I don't know how long it will last.  I have learned to appreciate each day much more.

I did 2 rounds of IL-2 with each round consisting of 2 weeks.  Round 1 - treatment then week off then treatment.  Round 2 same - total of 4 weeks of treatment.  Took 11 bags week #1, 4 bags in week #2 (interrupted by a visit to the ICU), 5 bags in week #3 and 4 bags in week #4.  My first scan after the first 2 weeks the docs said that I was in the top 8% of responses to IL-2 that they ever seen.  There is still disease left but a big chunk was taken down by IL-2.  Right now I am due for my follow up scans to see if the additional 2 weeks was able to knock it out.  Hopefully it did, but as long as there is progress that is all good. 

As far as clothes is concern, I wore the gown, boxers, mesh shorts and socks.  I changed my boxers and socks everyday because when I didn't after the first week those areas became more itchy than normal.  When I had clean boxers and socks for the remaining 3 IL-2 weeks, the itching was better.  In even weeks (week 2 and 4) they put a bed alarm on which is annoying but I knew how to disable it.  I knew when it was safe to walk to the bathroom and when it was not.  My parents were there most of the time so I had supervision.  Day #1 of treatment days you should be able to eat fine...after that you won't want to.  Not only because you will feel sick, but also because your tongue will have a feeling like it was burnt off in a bowl of hot soup.  Your throat will be very sore too.  I did not peel too much and never used lotion.  Slight peeling around my eyes but that was it.  In Week #1 I told the docs I thought I was in the year 1860 and that I was in a room of antique guns.  In weeks #2-4, did not get that bad but had some bad dreams.  Also your mind sometimes tells you to stop...and not have anymore.  Have also been plagued with some bad childhood memories that were "awakened" by IL-2.  In addition, you will feel like you are in a "fog" and will notice some slight memory loss.  All that stuff gets back to normal again after a few weeks. 

About 15 minutes before each dose I started to get anti-nausa meds which worked well. Be careful of Demerol.  Only took it twice and never took it again.  It gives you nausea, dizziness, and will make you throw up.  The only time I puked was when demerol was given to me on an empty stomach.  I rather have the rigors than have demerol.  The rigors last anywhere from 20 minutes to an hour.  The warm blankets they give you are nice and cozy. By the way...don't freak out but when you start IL-2 treatment your pee will turn to a "tea" color.  It is normal so don't panic.  Sometimes it will even look reddish.  Don't panic...it is not blood.  Bring some cottonelle wipes because IL-2 will give you the "runs".  Cottonelles are much easier than using that sandpaper they call toilet tissue in the hospital.  I used the green package of Cottonelles which had aloe and vitamin E.  Nice and soothing...like you were an infant again.   

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