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Interleukin 2 here I come!

NanaLou
NanaLou Member Posts: 71
Well on my last scan I was stable. No growth and no shrink. So I have gone through all the test to qualify for interleukin(Stress, lung, MRI of the brain) and past. I will go in the Hospital on the 20th of September for my first round. I am looking forward to having this and also getting it over with. Any tips are greatly appreciated. My Dr. said we will not do a scan until December. Did everyone else wait two month after to have there scan done?

Nancy
«134

Comments

  • jam66
    jam66 Member Posts: 55
    Me too!!
    Hi NanaLou!

    I'm not sure if you remember me from these discussion boards long ago. I think the last time I posted was about being N.E.D. after taking Sutent. Well, a lot has changed. When I stopped taking Sutent, the cancer came back. So back on Sutent I went. It worked again, but I felt oh so lousy on it. Now I'm down to 3 tiny tumors in my liver. (down from 6)

    I finally sought a second opinion from a kidney cancer specialist in San Francisco. He wants me to do the HD IL-2, starting Sept. 10. So we're almost on the same schedule! I'm definitely VERY nervous about the whole thing. And my kids, too, are all starting a new school the week before, so that just adds to the anxiety about everything.

    I've been lurking here on this board for quite a while. I had to climb down from my nutrition high-horse I was on after the N.E.D. scan.....I was naively thinking my plant-based diet was the key. I'm still plant-based, and believe it helps, but it's not the cure I thought it was. :(

    Everyone here is so great. Just hearing from Fox, Tex, Pjune, Gary, Alice, DonnaLee and all of the others keep me from wallowing in self pity!! Seriously, you all have no idea how inspirational you are. And funny. :)

    So, NanaLou, I'll definitely let you know how it all goes. I remember Pheonix here on this forum saying that using a deep moisturizer before the treatment helps with the peeling skin.. So I've been lathering up every day with the Aveeno Deep Moisturizing cream. I'm not sure when the next scan is after IL-2, but I see the doctor next week, so I'll find out then. And he can answer the other million questions I have.

    So, best of luck. I'd love to stay in touch either on this here board or via email. Let me know, and we'll commiserate about everything!

    Jennifer
  • garym
    garym Member Posts: 1,647
    jam66 said:

    Me too!!
    Hi NanaLou!

    I'm not sure if you remember me from these discussion boards long ago. I think the last time I posted was about being N.E.D. after taking Sutent. Well, a lot has changed. When I stopped taking Sutent, the cancer came back. So back on Sutent I went. It worked again, but I felt oh so lousy on it. Now I'm down to 3 tiny tumors in my liver. (down from 6)

    I finally sought a second opinion from a kidney cancer specialist in San Francisco. He wants me to do the HD IL-2, starting Sept. 10. So we're almost on the same schedule! I'm definitely VERY nervous about the whole thing. And my kids, too, are all starting a new school the week before, so that just adds to the anxiety about everything.

    I've been lurking here on this board for quite a while. I had to climb down from my nutrition high-horse I was on after the N.E.D. scan.....I was naively thinking my plant-based diet was the key. I'm still plant-based, and believe it helps, but it's not the cure I thought it was. :(

    Everyone here is so great. Just hearing from Fox, Tex, Pjune, Gary, Alice, DonnaLee and all of the others keep me from wallowing in self pity!! Seriously, you all have no idea how inspirational you are. And funny. :)

    So, NanaLou, I'll definitely let you know how it all goes. I remember Pheonix here on this forum saying that using a deep moisturizer before the treatment helps with the peeling skin.. So I've been lathering up every day with the Aveeno Deep Moisturizing cream. I'm not sure when the next scan is after IL-2, but I see the doctor next week, so I'll find out then. And he can answer the other million questions I have.

    So, best of luck. I'd love to stay in touch either on this here board or via email. Let me know, and we'll commiserate about everything!

    Jennifer

    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
  • foxhd
    foxhd Member Posts: 3,181
    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

    tough as nails
    My sentiments exactly. Nana and Jen, you are as tough as they come. Not an ounce of hesitation in your persuit of destroying the enemy.When the doors open at the hospital at 7 am, I know you will be there at 6:30 with your game face on. I have a feeling that someday I will be joining you and I'll look to you to boast my courage. We are proud of both of you. FLY. Fox loves you!
  • alice124
    alice124 Member Posts: 896
    HDIL2
    Nancy and Jen-First let me wish you success in this next journey. It's not easy. I can testify to that, but you ladies seem up for the task.

    Nancy, I believe the month wait for the scan is accurate. John, my husband, received 14 doses during his first round in January 2012 and 10 doses in the next round in early February. His scan took place March 15. The way I understand it, the HDIL2 has to be given time to work.

    Unfortunately, his response did not warrant continuation as there was only a reduction in one tumor and growth in many more. But he has no regrets; it was worth a shot at NED.

    While it was hard on John, others have gone through it easier. So I don't think worrying about all the possible side effects is worthwhile. You may experience some of the side effects but then you may not. Keep in mind you'll be under constant monitoring in an ICU type setting. The medical staff is quick to provide meds or to stop a treatment whenever necessary. Fatique, skin issues, loss of appetite, nausea and edema were the side effects John experienced, but, again, everyone is different.

    Again, wishing you NED at that scan that seems so far away right now. It will be here before you know it.
  • pjune127
    pjune127 Member Posts: 127
    I am so blown away...
    by your incredible courage and attitude. You know that it all "goes down" a bit easier with a smile and positive thoughts. We are like the "borg" (for you Star Trek fans...) We feed off each other in the best way. No one can understand what is happening to me better than you guys. I channel your courage. This board is a constant source of wisdom and compassion. Thanks to everyone for being here for me.

    I will be thinking of you ladies as you embark on your IL2 experiences. I wish I had the courage to do it. NED sounds wonderful, but alas, I'll probably never hear it.

    With love and admiration,
    Paula
  • NanaLou
    NanaLou Member Posts: 71
    jam66 said:

    Me too!!
    Hi NanaLou!

    I'm not sure if you remember me from these discussion boards long ago. I think the last time I posted was about being N.E.D. after taking Sutent. Well, a lot has changed. When I stopped taking Sutent, the cancer came back. So back on Sutent I went. It worked again, but I felt oh so lousy on it. Now I'm down to 3 tiny tumors in my liver. (down from 6)

    I finally sought a second opinion from a kidney cancer specialist in San Francisco. He wants me to do the HD IL-2, starting Sept. 10. So we're almost on the same schedule! I'm definitely VERY nervous about the whole thing. And my kids, too, are all starting a new school the week before, so that just adds to the anxiety about everything.

    I've been lurking here on this board for quite a while. I had to climb down from my nutrition high-horse I was on after the N.E.D. scan.....I was naively thinking my plant-based diet was the key. I'm still plant-based, and believe it helps, but it's not the cure I thought it was. :(

    Everyone here is so great. Just hearing from Fox, Tex, Pjune, Gary, Alice, DonnaLee and all of the others keep me from wallowing in self pity!! Seriously, you all have no idea how inspirational you are. And funny. :)

    So, NanaLou, I'll definitely let you know how it all goes. I remember Pheonix here on this forum saying that using a deep moisturizer before the treatment helps with the peeling skin.. So I've been lathering up every day with the Aveeno Deep Moisturizing cream. I'm not sure when the next scan is after IL-2, but I see the doctor next week, so I'll find out then. And he can answer the other million questions I have.

    So, best of luck. I'd love to stay in touch either on this here board or via email. Let me know, and we'll commiserate about everything!

    Jennifer

    Jam66
    I sent you an email. Hope you get it. I am planning to start the lotion after I finish this round of Sutent on the 1st. I think the feet is my biggest problem. I am really lookin forward to the break from the Sutent just to be able to walk easily again will be great!!!
  • NanaLou
    NanaLou Member Posts: 71
    pjune127 said:

    I am so blown away...
    by your incredible courage and attitude. You know that it all "goes down" a bit easier with a smile and positive thoughts. We are like the "borg" (for you Star Trek fans...) We feed off each other in the best way. No one can understand what is happening to me better than you guys. I channel your courage. This board is a constant source of wisdom and compassion. Thanks to everyone for being here for me.

    I will be thinking of you ladies as you embark on your IL2 experiences. I wish I had the courage to do it. NED sounds wonderful, but alas, I'll probably never hear it.

    With love and admiration,
    Paula

    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!!
  • tacyarts
    tacyarts Member Posts: 73
    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!!

    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
  • alice124
    alice124 Member Posts: 896
    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
    Hi - So glad to see your post. I seem to have lost track of you. Last time we communicated, you were anticipating getting into the BMS936558/Sutent trial at Hopkins, and I seem to have missed whether that materialized. Sorry if I'm asking what you've already posted, but you've been on mind.
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    tacyarts
    Hi - So glad to see your post. I seem to have lost track of you. Last time we communicated, you were anticipating getting into the BMS936558/Sutent trial at Hopkins, and I seem to have missed whether that materialized. Sorry if I'm asking what you've already posted, but you've been on mind.

    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
    alice124 Member Posts: 896
    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.

    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.
  • alice124
    alice124 Member Posts: 896
    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.

    started
    sorry
  • tacyarts
    tacyarts Member Posts: 73
    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.

    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.
  • tacyarts
    tacyarts Member Posts: 73
    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.

    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.
  • alice124
    alice124 Member Posts: 896
    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.

    Crutches
    Well, so much for my geographic skills. Hope the pain and crutches disappear soon. Please keep us posted.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    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!
  • jam66
    jam66 Member Posts: 55

    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!

    Thank you!
    Phoenix,
    This is great information. Thank you so much. I will definitely follow your advice to prepare myself as much as possible. Funny, in the countless Google searches I've done for IL-2, I haven't come across any information for the patients on how to prepare, what to bring, etc.
    I'm also glad to hear I'll forget most of it. :)
    You know, what I'm most nervous about is getting that picc line. Crazy, huh? I'm such a wimp. :(

    Sorry to hear that it didn't work for you though. But it's great that there are so many "back-up" plans today. Great that the Votrient isn't causing too many yucky side effects. Here's to NED in our futures!

    Thank you SO much!!

    Jennifer
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jam66 said:

    Thank you!
    Phoenix,
    This is great information. Thank you so much. I will definitely follow your advice to prepare myself as much as possible. Funny, in the countless Google searches I've done for IL-2, I haven't come across any information for the patients on how to prepare, what to bring, etc.
    I'm also glad to hear I'll forget most of it. :)
    You know, what I'm most nervous about is getting that picc line. Crazy, huh? I'm such a wimp. :(

    Sorry to hear that it didn't work for you though. But it's great that there are so many "back-up" plans today. Great that the Votrient isn't causing too many yucky side effects. Here's to NED in our futures!

    Thank you SO much!!

    Jennifer

    Jennifer, you probably
    Jennifer, you probably remember me - you and Nancy and I have chatted a bit on one or two threads a while ago. Phoenix made a brilliant debut on this forum and she's made a number of other valuable contributions, not least on the thread below, together with several other notable posters:
    http://csn.cancer.org/node/202594
    It's entitled "Interleukin-2 treatments for Stage 4 RCC" and there's lots of good stuff there.
  • strongmind
    strongmind Member Posts: 34
    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!!

    Good luck
    Good luck for ur IL-2 treatment. My husband had completed 1st cycle in july and his 1st scan results (after 6 weeks) are great. There is more than 50% response seen. He has his next sacn on september 17th and then I guess his 2nd cycle for IL2 will start. Side effects are bad...for him nausea and heart pounding was worse..in 2nd round of IL2, heart pounding bothered him lot..towards the end of week, diarrhea was worse...he took 10 and 9 doses but now we know its working, I guess mentally it will be easier for him to bear it. as PhoenixRising mentioned...keep drinking water, keep on moisturising your body and just be strong, you will be fine.

    all the very best,
    if you need more info, email me on [email protected]
  • alice124
    alice124 Member Posts: 896

    Good luck
    Good luck for ur IL-2 treatment. My husband had completed 1st cycle in july and his 1st scan results (after 6 weeks) are great. There is more than 50% response seen. He has his next sacn on september 17th and then I guess his 2nd cycle for IL2 will start. Side effects are bad...for him nausea and heart pounding was worse..in 2nd round of IL2, heart pounding bothered him lot..towards the end of week, diarrhea was worse...he took 10 and 9 doses but now we know its working, I guess mentally it will be easier for him to bear it. as PhoenixRising mentioned...keep drinking water, keep on moisturising your body and just be strong, you will be fine.

    all the very best,
    if you need more info, email me on [email protected]

    IL-2 Treatment
    Strongmind,

    Your post got covered up and I'm just now reading. 50% response; that's terrific. IL-2 is a tough treatment, but the 50% response must make it more palatable. Please keep us posted. Good luck on the 17th.