IL2 success stories?

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8/28/2010 10:57am
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Replies: 19

Hello everyone. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. I'm a little scared, a little nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

Fen - (8/28/2010 - 11:06am)

Kevin - I haven't done IL-2, but I know others will respond.  Congrats on your recent marriage - the picture is beautiful!  Sending you all sorts of positive thoughts, prayers, what ever else you need as you start IL-2 on Monday.  Please keep us updated on your progress if you feel like it.   Fen

Anonymous - (8/28/2010 - 11:30am)

Hi Kevin,

 

Congrats on you marriage. You married a special women to support you through these difficult times. I am sure you are happy about your brain radiation behind you.

How many brain radiation treatments are you having?

Could you describe the treatment & side effects of your brain radiation. When will you know if the treatment was successful & brai met gone?

Good Lucj with IL2...you are young & will do well with a positive attitude.

himynameiskevin - (8/28/2010 - 11:49am)

My brain radiation...  Monday was a consultation and MRI. Wednesday was my mask fitting and trial run. And Friday was the actual radiation. I only have one tumor in my brain and it's relatively small, so they did one strong local dose on it. It lasted about 30-40 minutes. No pain or feeling of anything during the radiation. I felt both common side effects later that day which were headache and fatigue, but neither were that bad. From what I understand the success rates with what I had and what they did is high and they have no reason not to assume that it went well. They're having me come back in a month for another MRI. My fingers are crossed. 1 down. 6 to go. 

Anonymous - (8/28/2010 - 12:57pm)

Wow Kevin, you did great.

I am claustrophic & do not like thing over my face. Is the mask tight on your face....was it hard to breathe??? Did they strap you down so that you could not move???

My worse fear is to get brain mets & need this procedure. Thanks you for replying to my questionsthat  I am asking because it does help.

himynameiskevin - (8/28/2010 - 5:05pm)

It's not that bad. It is really tight. But they mold it to fit your face, so you can't really tell how tight it is unless you try to move, which you can't. It's Mesh, so you can see  through it and your mouth isn't covered, just your upper lip. They bolt it to the table and then screw some sort of cage thing over that. It's all on your head, the rest of your body just lies there.

KatyWI - (8/28/2010 - 2:54pm)

Hi Kevin, here's some ideas for IL-2.  I'm a 59-bag veteran.  I'm 35 so I have a good "young person's" perspective.

First, is your beautiful new wife staying at the hospital with you?  I found it enormously helpful to have my husband around both for the mental and emotional support of just being there, and for practical things.  It's tough to get out of bed and move around with the IVs, so it's nice to say "honey, can you bring my some water/my toothbrush/a book/change the DVD?"  Also, when I was throwing up, which I did a lot, it was great to have him there to bring me tissues, a fresh empty basin, etc.  He was able to be much, much more responsive than the nurses because he was always there.

For nutrition...I got very nauseated and couldn't eat much at all, regardless of how much antinausea meds they gave me.  Maybe you'll do better.  Plan on losing 5 lbs body mass and gaining 25-30 lb water weight.  The couple of things I could reliably eat were canned peaches, popsicles, flat ginger ale, and oyster crackers (you know, the little round mini saltines).  Look for the brand of ginger ale made with real ginger; it helps a little with the nausea.

Wear sweats to the hospital because you won't fit in any clothes when you go home.  If you happen to have too-big shoes, wear those too, because your feet will be swollen when you leave.  (I pulled the orthotics out of my running shoes and that left enough extra room to cram my feet in.)  It's summer now in the US, so sandals would work too.  It was winter when I went.

Make sure you have good lip balm for your time in the hospital.  Wet wipes are nice because they don't typically let you shower, and sponge baths aren't all that much help.  Body lotion - I used it some while in the hospital, but used gallons once i got home.  Have your wife go find you some heavy-duty stuff that doesn't smell too girly.  Also, I know it's not manly, but really consider the Dove Sensitive Skin body wash for your showers once you get home.  IL-2 really screws with your skin, and the more gentle and moisturizing your shower stuff, the better.

Bring brainless stuff to do in the hospital.  Easy books (I read some Harry Potter until the longer books towards the end of the series got too heavy) or DVDs (Alf sitcom, anyone?!) are nice.  Bring your own pillow if you can.

Once you get home - take it easy, the water will come off in a few days, and you won't feel so bad.  My pattern was one week in the hospital, one week recuperating at home, one week feeling good, including some running & biking to work out, back in the hospital for a week, another recuperation week, and then 3-4 weeks feeling good before starting the next cycle.  The thing about IL-2 is...it hits you like a mack truck, but you do feel better relatively fast.

OK, this is getting long.  Stay optimistic and fight hard.

KatyWI, stage IV NED 4 months

Just keep going!

debbieVA - (8/29/2010 - 1:19pm)

Hi Kevin....

Glad to hear your you are progressing on to IL-2.  It's a butt kicker, but if you are blessed for it to be your silver bullet, it a home run!  

 

I had mets to both lungs, Stage 4 M1B, tolerated 57 bags in 2007-2008.  Glad to hear you checked out Jane's Operation Sun Shield site for info.  

 

In truth, the first week was the easiest.  I was able to sip tea, or soda.....and an occasional bite or 2 of food.  The CLS, retention of extracellular fluid was very uncomfortable.  Ask, insist, for LASIX prior to D/C and a prescription to take at home.  Also, many develop hives by the end of the week, keep benadryl handy.  This can be a medical emergency.  The hives were generalized but most often they were facial involving my lips and tongue.    

Itching and dry, peeling skin will be a problem.....this is generally viewed as a good reaction to IL-2.  The only thing that helped me was Burt's Bees Balm Cream.  BE VERY CAREFUL...in putting anything on your skin....do a TEST patch first to see if you can tolerate it.   

 

I showered everyday....if I was alert enough...QUICK, tepid showers, no soap....you don't need to dry out your skin further!.....just use more deodorant....

 

I also had my husband or dear friends with me around the clock.  I had times of alertness.....most of the time I didn't know what planet I was on...I was not able to read, watch TV, play games/cards....I was wasted week number 2 on.  

 

Insomnia and hallucinations were also a problem.  BUT I knew i was going to hallucinate and was NOT afraid...I was able to rationalize what was happening.  Having a companion is helpful.  

 

If I can be of any assistance, please contact me.  757.482.7798...I am home today.

 

Best to you....Time to slay dragons!  Keep focused running your race....eyes on the finish line....Running this race to WIN~!  ANd congrats on your wedding!  

 

Debbie Stage 4 NED

himynameiskevin - (8/30/2010 - 1:50am)

Thanks so much for all the info. I appreciate every bit of it.

Rebecca and Bob - (8/29/2010 - 8:55pm)

Kevin,

 

Congratulations on your marraige. I posted before that my husband did IL-2 and surgery, he is 13 months NED. I stayed with my husband every night. The nurses are not always there when you need them. I got him warm blankets when he got the chills, I even wrapped warm blankets around his head and brought an electric blanket. I also asked for meds on his behalf and got him water constantly. I made him walk around the hospital floor it seemed to help keep him going. I don't think laying in the bed for a week is a good idea, plus I think the walking helps with keeping the circulation and urination. I know too much info, but they will monitor your urine and will not let you do the next dose if you don't keep urinating so it's important, because you want a lot of doses your first round.  I also called Debbie from VA who is a blessing. This is tough treatment but he was 41 at the time and he is 44 now so if he can it do you can to. I also brought funny movies to watch to try and keep his mind off of it. Sometimes laughing is the best medicine. My husband really had a positive attitude through the IL-2. He kept saying to me it's going to work don't worry. I know people always say stay positive, but I think there is something to it. Good luck and we will send positive thoughts and prayers your way.

 

Rebecca

Believe

himynameiskevin - (8/30/2010 - 1:52am)

Thanks Rebecca. It means a lot.

chrisS - (9/4/2010 - 2:10pm)

Hey Kevin,

My name is Chris and my wife Melissa is currently at Stage IVc.

I was hanging in my wife’s hospital room last night and this was just to much of a coincidence to ignore.  She started IL2 on Tue  in San Diego also and was having a rough day yesterday.  We have not done much internet research because we were afraid and figured just tackle the IL-2 blindly.  My first search, last night brought me to your post!  I couldn’t believe it.  She started the day after  you and it helped her to know that she wasn’t the only young person that was going through the same challenges.  Her 32 Birthday is on the 4th and we hope to be home for it.  I know you are doing/did great and wish you well on your next round; mentally we will be right there with you.    I wish the best for you and your wife.  Married life is awesome,  we love every day of it even after 4 years!  Enjoy your weekend.

himynameiskevin - (9/6/2010 - 10:47am)

Hi Chris. By chance were you and your wife at the Thorton Hospital at UCSD? If so I think we were a couple doors away. Nurses had mentioned to me that there was another IL-2 patient in the wing and suggested talking but couldn't reveal names because of patient privacy and what not. I hope the IL-2 went well for your wife and hope shes handeling the side effects ok.  I've been home for two days, and the two days I've been back have been far worse then my time in the hospital, all the side effects I wasn't having in the hospital, I'm having at home. This morning though, I can tell I'm finally on the mend, feeling pretty good. Now one week to prepare myself for round two. It's gonna be a rough one.

Well if your wife and yourself happen to be at UCSD and would like to share some stories or want someone to talk to let me know. I'll be around. I'll be wishing the best for you both. Take care. -Kevin

hey kevin, thanks for updating. I was wondering how your first week went.

I hope Melissa did well with her first week too.

Good luck to both of you!d

 

dian in spokane

chrisS - (9/7/2010 - 12:19am)

We were at Thorton. Room 221. We also were suggested to meet but really didn't know how to facilitate that with the patient privacy thing. She is having some weird side effects since she has been home also. Our last night in the hospital was really long. They need to hook her up to some oxogen and give her inhalers to help her breath. She did all 14 doses. Last night she was having bad insomnia and mild hallucinations which was not the case in the hospital. Her heart rate is still really high which I think why see is having trouble sleeping. She seems better tonight.

I heard your wife was inquiring about parking. I spoke with a few people and figured out a good way to do it. It you buy a pass in the morning (get it from the machine that's in the trailer near the back of the parking lot, just lift up the cover, they don't lock it for this reason)and you can show that pass for INs and outs all day. It will say it expires at 11pm but is good for all night also. $3 a day works for me! I was leaving 2 times a day to let our dogs out.

Hang in there, and we will be back in the hospital starting next Monday. We are definitely here if you would like to talk also. Melissa just added "Enjoy your week off!"

Sorry to hear about the side effects, I definetly had hallucinations and insomnia the last two nights, I've also had a shortness of breath that started in the hospital but I think is finally starting to go away. The peeling has been constant though.

Good job on the 14 bags, and thanks for the parking tips. We'll be going back next monday as well. Maybe we'll see you there. It's going to be a rough ride. But at least we kind of know what to expect. We can do this.

Enjoy your week. Rest, relax and prepare.

-Kevin and Brenda

Hi Kevin

i don't have any advice on IL2 just wanted to congratulate you on your marriage and tell you that you will get through this and you are not alone, there are a lot of us in your corner.

best wishes

James

Rick from NC - (9/6/2010 - 5:56pm)

Best wishes to you, Kevin.  I had a complete response to IL-2 back in 1992 and have been well ever since.  As others have said, it's not easy, but I'd certainly do it again. 

sabrinarae42 - (9/28/2010 - 9:34pm)

Hello. How is the IL-2 going for you? I hope well. MY brother is also in San Diego at the Naval Hospital. All of our family is on the east coast. VA/PA/NY and he has no one there with him. He has recently been diagnosed with melanoma and it is all happening and spreading so fast. They plan to begin treatment with IL-2 very soon. I was wondering if you could give me any suggestions or any positive remarks to give to him and to prepare him for what he is about to go through. He really needs a support system closer to him. Take Care

Brandi - (9/29/2010 - 7:18pm)

Hi Kevin,

I just wanted to wish you and your wife congratulations. Good luck to you, hang in there! I'm happy to hear you are feeling better.