Interleukin 2 here I come!

garym said:

True survivors...
NanaLou and jam66 too,

Weaker sex my butt, you guys rock!!! Helping newbies through that initial OMG phase is therapeutic, but the real reason I hang around here so much is because of the warrior stories like yours, fox, donna, tex, Alice & John, lb, and many more. It is you that inspire me and give me hope, it is you that help me keep the "will it return" demons at bay, I know because of you that survival is possible. I am honored to be in your circle of life.

You are ALWAYS in my thoughts and prayers,

Gary

tacyarts said:

Il2
I did the il2 in feb, 10 doses first and 7 the second. I feel that the best thing to do is expect the worst of all of the side effects, then when they are not as bad as you expected, it is almost a relief and it made it easier. I felt like I had the flu really bad with a little nausea but it wasn't unbearable. I had skin issues afterwards but was absolutely worth the possibility of Ned. Best of luck in the whole process, I hope it goes smoothly and cures all sickness. Good luck to u

tacyarts said:

Started
Ive started 10 days ago, lots of delays . Cancer got into my femer bone and broke my leg , so I've been on crutches for 8 weeks now, it's driving me crazy. Lots and lots of leg pain, the surgury on my leg actually held up my start time for the trial. I've taken trial drug and sutent fairly well, side effects are minimal. Seems like some of leg pain has gone away but that may be in my head. I hope that John is also doing well.

alice124 said:

started
How much longer for the crutches? The treatment could very well be starting to kick in; don't dismiss that idea.

Are you getting around okay - to appointments, etc.? If I can help, let me know. If my memory serves me correctly, you're relatively close. If you do, send me an email from the CSN email.

Please let us know how things are going. Your feedback is very important. I'm not sure if we have any other CSN members in this BMS/Sutent leg of the trial, and we're really interested in how you are doing. So sorry you've had such a tough start.

We're pleased with John's progress, and hopeful and optimistic about it continuig. Ditto that for you. Keeping you and your children in my thoughts and prayers.

tacyarts said:

Crutches
The crutches are here until the trial makes the pain in my leg go away. I can't really do anything about it while on trial , so I am stuck with them . Thanks for suggesting help getting around but I live in west Virginia 3.5 hour drive. Take care and let's keep each other updated.

Phoenix Rising said:

Just completed IL-2- My advice...
Good luck to all embarking the journey that is IL-2! I just completed my second round in July after having 7 treatments each round. My best advice is:

-Start rubbing yourself down with Eucerin cream or Aveeno Intense Moisturizer well ahead of the treatment-- that way the itching and skin peeling side effect won't be severe and long-lasting. Bathe with a non-drying soap.

-Anticipate water retention-- keep the salt out of your diet now. I went in weighing 135 lbs and came out at 170 lbs. Eat watermelon 2-3 times a day and keep your feet elevated when you get home, and you will drop the water retention quickly.

-Drink more fluids than usual and drink alot of water in the hospital to help kidney function and stay flushed.

-Take a cooler to the hospital filled with bottled water and Coca-Cola. Sip the Coke to ease nausea. Keep light, cold snacks like Jello or apples in the cooler.

-Don't like Coke? Keep a fresh ginger root by the bed and sniff it when you feel nausea coming on. Poke your fingernail in it to create a fresh opening to sniff.

-Take a heating pad and place it under your feet as soon as each dose begins, to stave off chills leading to rigors. If you feel a chill coming on, immediately ask for something for chills at the first sign. They'll add a shot of Demerol to your iv and you'll drift off to sleep.

-Expect the nurses to give you a cocktail of drugs every 4-6 hours for the the side effects most people have-- nausea, fever, diarrhea. They will slow down the cocktail after you or the doctor decide on your last dose.

-Ask for a prescription for sleep aid (I got Ambien) before you go home from the hospital. Between the anxiety of wondering if the treatment worked, waking up in the middle of the night anticipating someone coming in the room with meds or a blood pressure check or a new iv bag, you won't be able to sleep. You might also a rapid heartbeat or pounding heart and can't seem to sleep through it.

-Feel free to tell them when YOU want to stop the doses. There is no magic number of doses. In my first round, I knew it was time to stop when my heart was pounding and I couldn't think straight. In the second round, I knew it was time to stop when one night, the black and white spotted elephant stuffed toy (that was never there) at the foot of my bed disappeared when I blew at him and told him to go away.

-Feel free to forget everything that happened during treatment. It is common to do so. I remember all my visitors but have no idea what we talked about, although they said I was chirpy and talkative. About a month after the treatment, I saw one of the nurses who apparently attended me while in the hospital. She spoke to me by name and reminded me of a funny story I told her about a fall I took while walking to work. She asked me if I remembered. I said, Oh yeah ha ha I remember! When she left I thought, Who the heck was that and when did I tell her I fell? I did fall, but I don't recall telling anyone in the hospital.

Hope this helps!

NanaLou said:

Thanks for the support
I just want to let all of you know, I really appreciate your support!! I don't post here all that often, but I do drop by and read alot. It does truely help. We celebrate each other victory's,and greive a little with set backs. None of us know the future but we will be here to help each other fight when it comes!!