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Does my caregiver need to be there for all three weeks of HD IL2?

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

My wife and I both work at the same place and she's trying to figure out what leave she needs to take.

I go in for HD IL2 on Monday 2/24 and get out Saturday and then go in again on Monday Mar 10 for the second round.  The hospital does accomodate caregivers on a cot in the private room and she's willing to do that if necessary.  But once I get home for the nine days will I need support or can she return to work for the week that I'm home.

I should mention that right now I'm not really sick--maybe a little fatigued, but otherwise I've been pretty good since October following open radical neph in September.

And am I right in assuming that if these two rounds show promise I'm likely to get a third round in a few months?

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

IL-2 treatments can have extremely varying side effects from patient to patient. To be honest you probably wont know how much you will need her until you are several days into the cycle. A lot of IL-2 HD patients describes it as the "the flu from hell".

/G

foxhd's picture
foxhd
Posts: 3054
Joined: Oct 2011

As I've mentioned, I did not want anyone with me while I was in the hospital. Not even my wife. Your bill will be huge. (mine was over $300,000/week. thanx for ins.) That includes trained people there to help you as necessary. I just don't think that a loved one could make this experience better. Once home, I admit that I needed help for transfers, and food once I could eat. The first and fourth week were the toughest ones. I was like a zombie. 6 weeks after the first two treatments I was scanned and then the decision to do the next 2 treatment weeks was made. Don't let my unique experience discourage you. It is much more tolerable for most everyone else.

strongmind
Posts: 34
Joined: May 2012

Hi there,

My husband had undergone IL-2 treatment in July 2012 and Oct 2012 . He was 32 years old at that time. Side effects were very hard but hospital staff was always there. Even if hospital staff was there, we never left my husband alone, me and my father in law took turns to stay there. He could tell us to massage his head, press shoulders, legs when he felt so tired, but I don't think hospital staff would do that..

I wish you all the best..As FYI..Il-2 worked as wonder for my husband, his torso scans are coming out clean since last one year...he is having trouble with brain mets though..his brain is clean at this moment..touchwood..

all the best...you are in our prayers..

ksaldivar1
Posts: 10
Joined: Jan 2012

I think everyone's experience is different with HD IL-2.  My husband, like Foxhd, wanted to be left alone.  Best of luck to you!

DMike's picture
DMike
Posts: 257
Joined: Nov 2011

Thaxter,

Everyone and everyone's case is different. When I went in for IL2 treatment, I asked if my wife would be able to stay in the room. I was at Vanderbilt and their reply was that they encourage you to have someone stay with you. I was in their Critical Care Unit and the rooms were set up with a small area for someone other than the patient to stay in the room. It even had a curtained off area and a refrigerator. It worked well for us.

The week I was home, my sister came up and stayed with me for a day, but I was fine so she went back home. I stayed by myself at home while my wife went back to work. I also did fine at home by myself after the second round.

There's really no yes or no answer to your qustion. It all depends on how the IL2 affects you.

Best wishes, David

 

Bellweather
Posts: 95
Joined: Jun 2013

I was only able to take one round but knowing my wife was there was important to me to say the least.  However, she had a friend in houston where she went at night and this worked well as I seemed to get the rigors pretty bad from my pm dose and she did not have to see that part.  To Fox's point, her absence at those times were a blessing and the Nurses at MD Anderson were awesome, providing warm blankets and alot of hugs and compassion.  In the end it was very good for her to have an option to get away as the treatment is sometimes as difficult for loved ones as it is for us, but in a different way.  I would not have young children or teenagers present, it's just not very pretty at times.

If my kidney could handle thehdil2, I would do it again dispite the extremely tough side effects.  I am praying for your success, go and kick some ***!

 

 

one putt
Posts: 72
Joined: Sep 2012

My wife was still working when I did my 2 week stint of IL-2. She would stop by every day to see me. I dididn't need her to be with me all the time. I don't know the situation at the hospital where you're going for treatment , but at Hopkins they have a dedicated ward for IL-2. All the rooms are private but the level of care was just like being in an intensive care unit. The nurses were unbelievably attentive. My wife, Alice, would have preferred to spend more time at the hospital, but I prefer to go it alone for the most part when I'm sick.  Here's hoping for success and NED.

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

I was told they admit four or five patients every week so it's an experienced team.  Also Dr. Weiss may have been doing IL2 longer than almost anybody so that makes me feel more confident.  We'll play the caregiver thing by ear and see how it goes after a few days.  Stress test and brain MRI tomorrow to qualify since IL2 and brain mets don't play well together.  As my co-worker said about the MRI--"I'm sure they'll find nothing"   Took me a minute to get the joke.  I really don't have any symptoms right now but my vision is getting a little blurry maybe since my BP has gone up?

Ed Brabant
Posts: 60
Joined: Apr 2013

My wife was with me for my 2 rounds. First round I don't remember at all. 2nd round really bad side effects. My wife saved my life twice. First time she heard the bed shaking at around 2 am. It woke her up. She alerted the staff at MGH and they went into action. High fever and uncontrolable shaking. 2 days later same thing. That was the last dose of IL2 I had. If she wasn't there I wouldn't be here. So YES have your wife there.

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