Starting HD IL-2 Monday @ Hopkins

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5/30/2014 12:53pm
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Replies: 12

Thank you to all of you who posted IL-2 experience on thhis board, I have read many of them.  If you have had this treatment, what did you wish you had brought to the hospital?  I am packing in anticiption and would love some advice.  If anyone has had this treatment at Hopkins, would you share your experience.  Thanks

Hi, is this your first treatment for stage 3 or 4 melanoma? I'm just curious how you decided on going for IL2? 

I have had a few types of treatment already but I've not had IL2 yet. Sorry to give you any pointers, but it's possibly my next option if my current drug/trial doesn't work. So I'm interested in IL2, and what drew you to it. 

Thanks,

Shane

I am stage IV (found by "accident"--thought it was a fibroma on my ovary).  They removed my ovary and then pathology came back as melanoma. PET scans found thyroid cancer (papillary and hurthle cell) so I had to treat that first.  The only other confirmed met is small (5 mm) in my breast.  Since I am "young","otherwise healthy", BRAF negative and low tumor load, my only choices were FDA approved IL-2 and yervoy (ipi).  We are going to try the IL-2 first and if it is unsuccessful, move on to ipi, hoping that PD-1 will be approved this fall.  

Go to my website linked below and select Patient Perspectives.  Look for IL-2.  There are several links there from folks who have "been there, done that" and wrote up what they felt was helpful.

Good luck!

check this new study. they say the results are encouraging and better than the normal/older statistics. i have seen the study author/docs,  and they know the dic who gave me il2 in 2019, 

one thing i learned about il2 is that it seems mostly everybody gets some but not all of the typical side effects. that was the case for me.the first week will be a learning experience in terms of which side effects you encounter. fod nd water taste was big one for me consider trying takeout if hosp food doesnt seem good.

best of luck! -kyle

doc and 2010.

me and my fingers on a small screen. 2019 sounds good tho!

I did IL-2 starting December 2012 and finishing in May 2013. Unfortunately while it killed all of the tumors I had at that time I wasn't lucky enough to be one of those long term responders, but that's besides the point. Not sorry at all for doing it and my reasons were similar to yours. As far as what to bring- this first time bring a little of everything- a sweater or 2 (zip up will be easier than pull over due to the monitoring equipment, etc) in case you get cold. I found that I tended to be very HOT so in later trips I still brought 1 sweater just in case but mostly packed loose tee-shirts or scrub tops (like what nurses wear- you can get them at Wal Mart and many other places- they're very loose and boxy, fit well over the montoring equipment, and are easy to put on/take off) Loose comfy sleepwear- again the first time I brought flannel (it was winter) but very quickly realized I was too hot in them and in future trips brought lighter summer type tee and light cotton pants. For your first trip you might want one of each so you have options as you figure out how your body's going to react. I know a lot of people like to bring their own pillow(s). I didn't, but I did bring a blanket, which I used a few times when I got chills, but most of the time was too hot to want it. For daywear, I already mentioned the loose tops, but I'd go with sweatpants or shorts or some other streatchy, comfy bottoms. Baseically, whatever you like to wear when you get the flu and feel like garbage- bring that to wear. 

The "whatever you like when you feel like garbage" theme works for pretty much everything else as well- entertainment, food, etc. I did not have mine done at Hopkins, so I don't know what their setup is, but we had access to a community fridge/freezer. I always brought saltine crackers and a few granola bars to keep in my room and my husband would go out and buy string cheese, a little yogurt, and some popsicles to keep in there so that I had a few snacks in case I wasn't hungry while the food service was available but got hungry later. Whatever usually tastes good to you when your sick, think about bringing some with you. You may not feel like doing much after the first few days, but I always had some light reading, puzzle books, and the crossword and puzzles from the daily newspaper to help keep me entertained and each room had a tv/dvd player. It cost to have the tv channels and we quickly decided after the first week that we didn't use it enough to make it worth paying for, but if we brought dvd's we could just watch a movie now and then. Alternatively, most laptops now will play a dvd if you just want a movie now and then. Bring some easy on/off shoes or slippers so you can take walks (wich you should do at least 3 times a day if you can) without slipping on the floor or passing out trying to tie laces. 

As far as side effects, they're a little different for everyone- a previous poster was right when they said the first time is a learning experience, then you'll know better what to expect and what you'll want for future rounds. The important thing is to report your side effects as soon as you notice them so they can help you deal with them. Don't try to tough it out (speaking form experience) it's really not worth it- just tell the nurses and take the help. I brought a whole lot of stuff with me (mostly clothing and entertainment stuff) the first week that stayed home the second time we had to go. I had a seperate bag for clothes and entertainment and the entertainment bag (which also had the crackers and granola bars) basically never got unpacked, I just swapped out a few dvd's and restocked the crackers and it was ready to go each time we had to check in. If you have someone that's going to be staying with you at the hospital, they should bring snacks and things with them as well so they don't have to buy all of their food all the time. The center I was in gave the family member/support person discounted meals at the caffeteria, so that's something to ask about if you have someone staying with you. 

It's not  easy, but it's very doable and you'll recover quickly, no matter how terrible you feel. 

Good luck to you!

I did IL-2 at NIH in 2010-11. Lots of good advice given here, not a lot I can add. Everyone's experience will be different, but as stated above, the best way to prepare is to get ready as if you knew that you were going to have a bad case of the flu but had time to prepare to make yourself as comfortable as possible — I think that's a great way to plan for it. Comfortable clothing, snacks and drinks, ways to be entertained. If someone will be with you, the same for them. During the last few doses and the two days after stopping dosing, I was pretty out of it and slept most of the time, so my wife watched a lot of movies, read, did some hand quilting, etc.

Also, if someone will be with you, have a plan for how they'll spend their time — facilities vary on their policies, but at NIH, they try to put the IL-2 patients in their own room without a roommate, especially during active dosing, if not the whole time. It's helpful to have someone with you to help with getting to the bathroom, going for walks, and helping monitor your "mental status" and report to the nurse if you're acting strangely. In addition to monitoring your physical status, the nurses will likely "quiz" you — "What's the date?" "Who is the President?" And my favorite, "Count backwards from 100 by 7's." The point is that no one knows me better than my wife and she could tell if I was just being my "normal" sarcastic self or perhaps acting odd, even for me. I gamed the nurses' questions from the beginning — they would come in and before they'd say anything, I'd start, "100, 93, 86, 79..." I didn't have any significant mental status changes, but if there were, she would have known. So plan your caregiver's time upfront if you can, recognizing that they need to maximize their own rest. With scans and PICC line placement, etc., I was usually admitted at least a day before starting the actual dosing. She could have stayed in my room on the reclining chair every night, but wouldn't have slept well, so we made sure she spent that night in her room at the hotel or lodge. During dosing and at least the first night after finishing, it was great to have her spend the night there, but then for the few days of recovery, we made sure she got her rest. 

The only other thing that I'll add, and this may not be something everyone experiences, has to do with "associations". Most will agree that IL-2 is very difficult, it was one of the hardest things I've done in my life, but those things passed and I don't regret it. However, after finishing all the rounds, I had to change my normal soap, shampoo, and deodorant because during IL-2 I noticed my sense of smell was in overdrive and those specific smells always reminded my of the experience. Weird, I know.

I wish you the best next week!

Some very good points about the caregiver. I also had my own room with "accomodations" for the caregiver, but with nurses coming in every few hours hospitals are not restufl places. Our hospital had worked out deals with local hotels to give patients and families reduced rates on rooms and there were a couple of "guest houses" run by the American Cancer Society, etc that were either free or charged very low fees ($25/night). Some even provided shuttles to/from the hospital. My husband also slept outside the hospital so that he could be well rested and better able to help me during the day. Also, I just learned yesterday that some insurance companies have programs that will reimburse you for hotel stays/travel depending on the hospital you have to go to (what I was told was for Cancer Ceters of Excellence I think if you google it you can find a list). Not all insurances have it, but it may be worth looking into.

I have not done IL2 so I can't speak from personal experience.  Jerryfromfauq did a phenomenal job of keeping a diary during his treatment and has recorded it under his profile.  It does paint it as a pretty rough treatment but it seems like everyone I've ever heard comment on it says you recover pretty quickly after each round.  Best of luck next week!

http://www.melanoma.org/community/profiles/jerryfromfauq

http://www.melanomaresources.info/jane.html

http://community.melanoma.org/cgi-bin/mpip/dbforum.pl?header=archive&db=...
 

I't's doable.  I took my computer and and kept occupied with it.  Also recommend a large heating pad.  If you don't have one ask the staff for one.  I often needed it an hour or so after most doses.  My experiences with my six weeks of IKL-2 are in my profile.

 

I'm me, not a statistic. Praying to not be one for years yet.

Thank you all so much for your tips and encouragement!  It means so much to know that there are warriors buoying me up through this.  

Anonymous - (6/1/2014 - 2:52pm)

Who is your doctor there?  I hadn't heard they still used IL2 at Hopkins.  Is it part of a trial?  What else have you tried?