• Anyone who has started IL-2 treatment, were you nervous before you started?

    Asked by UpandUp on Wednesday, May 22, 2013

    Anyone who has started IL-2 treatment, were you nervous before you started?

    I just don't know what to expect. I guess that's the way it is with everyone. You don't know until you have it done.

    2 Answers from the Community

    • melanomamama's Avatar

      IL-2 was no picnic. I was hospitalized, twice, for six days each time. They hospitalize you to monitor the side effects, which are harsh enough that they could land you in the ICU. Although the side effects are harsh, the worst of them are not constant. I was given infusions every 8 hours or so, and for the first couple of hours after each infusion, I was not a happy camper. The list of side effects your doctor will warn you about are more in the category of promises than warnings of things that might happen. I was told to bring baggy clothing, because when I got released from the hospital I would be several sizes larger from water retention. (That went away within days with the help of pills that make you pee like a racehorse.) Later on in each cycle I could walk around the ward and visit with my friends and family. I was sometimes able to send emails, but at other times, I was too foggy to focus on the computer keys. I also wasn't able to focus enough to read much, but I sometimes played Sudoku number games and I watched movies. If you can bring music, pick some slow and soothing music. I got so agitated that, at one point, I asked my mother to calm me by singing a lullaby, which she did. (It calmed me, but my 89 year old mother burst out crying.) Another time a volunteer harp player appeared and serenaded me in my room. I also hugged a Teddy Bear, and I developed a private calming technique in which I use an African gourd rattle (something like a Mexican maraca) and rattled it over the tumor in my chest while I breathed deeply to calm myself. I envisioned myself rattling the tumor loose and telling it it was free to leave.

      I don't want to scare you too much, but it takes courage to face this treatment, and the statistics about its benefits are not that encouraging. The best thing is that, if it does work for you, it could work well enough to extend your expiration date by years. My IL-2 treatments were 5 and 1/2 years ago, and I would have lived only months without them. I did have a bad recurrence this year, but it was taken care of by surgery, radiation, and Yervoy, so I'm luckily back to a state where my Stage IV melanoma is inactive.

      I found the most difficult part of IL-2 treatment was going back for more after the first round. I asked my oncologist if there was a support group, and there wasn't, but he referred me to one of his patients who was 8 years out from his IL-2, and doing well. The patient agreed to talk with me, and we chatted for a long time. He gave me the encouragement to go back for round two. If you would like to talk with me you could email me and I will privately send you my telephone number. I am at [email redacted]. I am happy to talk about this experience.
      I also wrote a book called Melanoma Mama: On Life, Death, and Tent Camping in which I describe my IL-2 experiences and all the side effects. You can find it (and read the first two chapters for free) on Amazon or on my website, www.melanomamama.com.

      Another consideration is your home care following the treatments. I was disoriented enough that my parents feared I would fall down in the night while going to the bathroom, so they gave me a bell to ring to wake them, and they told me not to walk down the hallway at night by myself. My skin was itchy all over, and for several days, I could only wear a silky kimono that didn't cling anywhere. The hospital sent me home with a potent anti-itch skin cream that helped. My food tastes changed completely, but temporarily. For several days all I wanted were cheese Goldfish crackers and popsicles. I couldn't tolerate vegetables, which I usually love to eat.

      I hope this grim tale is not too much for you to bear. To get me through, I thought of the line from the Bob Dylan song, "When you ain't got nothin', you got nothin' to lose," so, although IL-2 is extreme, it's worth a shot, because when it does work, it extends life better than other treatments.

      over 3 years ago
    • melanomamama's Avatar

      As a followup to my answer about my IL-2 treatments, I noticed that the system erased my email address which I sent in case you want to contact me directly. To find my email address, you can got to my website, www.melanomamama.com, and the email appears on the home page.

      over 3 years ago

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