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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
«13

Comments

  • rae_rae
    rae_rae Member Posts: 300
    Nancy
    No advice here but want to wish you well. You will be in my thoughts and prayers for Sucessful treatment! You have a positive "let's do it" attitude! I'll be cheering you on all the way!
    Rae
  • 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.
  • jam66
    jam66 Member Posts: 55

    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.

    Here I go...
    Thanks, Tex, for the link. There was some great information in there.

    I'm off tomorrow bright and early for my treatment....I'm calling it my lil' getaway. :). I just took an Ambien to turn off my monkey mind and get some sleep. I'll try to check in here during the week, but who knows. I'm hoping I can sleep most of the week away. (wishful thinking?)

    I'm sure it'll be a fun ride!

    May thanks to all, and I hope you all have a great week!

    Jennifer
  • IL2 Treatment
    I had my first treatment in 2009 I think. It is normal not to have a follow up scan for a few months to see if the treatments are helping. I was never able to have all the doses in my week on, i don't think i ever got past bag 6. On my 3rd round of treatments my heart dicided it did not like the treatment very well, so it stopped, then the next day it started beating so fast they thought they would have to shock my heart to slow it down, but great for me my heart dicided to slow down on it's own, but the cardiologist said i could not have any more. thank the good lord i must of got what my body needed, because there has not been any sign of the disease acting up for 2 years now. be prepared for a ruff ride, but remember with gods grace you will come out the other side well again. you will have lots of mouth sores, be on a hell of a bad roller coaster ride, but my preyers are with you. sharon
  • donna_lee
    donna_lee Member Posts: 1,018

    IL2 Treatment
    I had my first treatment in 2009 I think. It is normal not to have a follow up scan for a few months to see if the treatments are helping. I was never able to have all the doses in my week on, i don't think i ever got past bag 6. On my 3rd round of treatments my heart dicided it did not like the treatment very well, so it stopped, then the next day it started beating so fast they thought they would have to shock my heart to slow it down, but great for me my heart dicided to slow down on it's own, but the cardiologist said i could not have any more. thank the good lord i must of got what my body needed, because there has not been any sign of the disease acting up for 2 years now. be prepared for a ruff ride, but remember with gods grace you will come out the other side well again. you will have lots of mouth sores, be on a hell of a bad roller coaster ride, but my preyers are with you. sharon

    Would you believe
    I've heard Sharon's story many times, as we attend the same Cancer Survivors' Support Group here in SW Oregon.

    When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago.

    And then I think about what I have been made aware of. I personally know 6 other people in this small community who have had kidney cancer in the past 1-12 years; am aware of a couple of others thru "gossip"; and another who was a brother of a survivor, but chose to give up. None were aware of the possibility of cancer when they saw a Dr. for something else- abdominal pain on the other side, regular physical, weight loss, neck problem, hematuria...and the list goes on. The odds are 1 in 60,000. Our county only has that many people in an area the size of New Jersey; with only one of the known survivors having served in Viet Nam.

    The answer to all the hypotheses and theories-thumb your nose at everyone and get on with living. Long before Dx, I'd flown to Kuwait to be there for a month when my daughter had her second child. Add to the 18 hours flying time, minimum 4 hours wait in London, clearing every kind of customs, visa, etc., I crashed that night and slept soundly. The next "morning", I was greeted by the 3 year old with, "It's time to get up, we need to play, Grandma."
    So I get up and play-every day. Hang in there, y'all.
    Donna
  • Max Power
    Max Power Member Posts: 60
    Late input
    Here is some late input. I like Phoenix's suggestions, the last two applied to me. I didn't really know going in that I was to determine when I had enough, so I went one or two doses more than I would have liked. The second week in I cut out a bit earlier, but still got enough doses that no one would say I didn't get enough.

    What made me decide to go in originally was the realization that halfway through, i.e. after 2 weeks on, they determine if it is working or not. Originally I thought that I would have to go through the whole ordeal to find out, and I was on the fence. But finding out halfway through made the decision for me.

    I went in with progression and as it happens for me IL-2 stopped the progression. However stability is not enough to get the OK to move on to the second half. They want shrinkage. Not that they are being mean, but they had found that for those of us who got stability only, the second half never seemed to make much diff.

    The good news is that I retained the stability for 2 years! That pretty much made it worth it - no treatment or side-effects for 2 years. Since I was symptom-free, stable is good!

    Also I came out of there with a healthy respect for the nurses. They had a really hard job. Taking us in, making us feel good, watching us deteriorate by day and having to clean up after us and still keeping their professional demeanor. Amazing.

    Good luck to you, and know that this will all be a dim memory some day.

    Max
  • garym
    garym Member Posts: 1,647
    donna_lee said:

    Would you believe
    I've heard Sharon's story many times, as we attend the same Cancer Survivors' Support Group here in SW Oregon.

    When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago.

    And then I think about what I have been made aware of. I personally know 6 other people in this small community who have had kidney cancer in the past 1-12 years; am aware of a couple of others thru "gossip"; and another who was a brother of a survivor, but chose to give up. None were aware of the possibility of cancer when they saw a Dr. for something else- abdominal pain on the other side, regular physical, weight loss, neck problem, hematuria...and the list goes on. The odds are 1 in 60,000. Our county only has that many people in an area the size of New Jersey; with only one of the known survivors having served in Viet Nam.

    The answer to all the hypotheses and theories-thumb your nose at everyone and get on with living. Long before Dx, I'd flown to Kuwait to be there for a month when my daughter had her second child. Add to the 18 hours flying time, minimum 4 hours wait in London, clearing every kind of customs, visa, etc., I crashed that night and slept soundly. The next "morning", I was greeted by the 3 year old with, "It's time to get up, we need to play, Grandma."
    So I get up and play-every day. Hang in there, y'all.
    Donna

    Would you believe...
    Hi Donna,

    I too have known many that battled / are battling RCC. Of the 7 that did not survive 3 were from the same rural area as me and 4 were from a large near by city. Since my dx 2 other people I know in my area (one a close friend) have been dx'ed and are doing well following partials. Odds being what they are, it sure makes me wonder if there isn't something in the water.

    Play on Granny,

    Gary
  • NanaLou
    NanaLou Member Posts: 71
    Max Power said:

    Late input
    Here is some late input. I like Phoenix's suggestions, the last two applied to me. I didn't really know going in that I was to determine when I had enough, so I went one or two doses more than I would have liked. The second week in I cut out a bit earlier, but still got enough doses that no one would say I didn't get enough.

    What made me decide to go in originally was the realization that halfway through, i.e. after 2 weeks on, they determine if it is working or not. Originally I thought that I would have to go through the whole ordeal to find out, and I was on the fence. But finding out halfway through made the decision for me.

    I went in with progression and as it happens for me IL-2 stopped the progression. However stability is not enough to get the OK to move on to the second half. They want shrinkage. Not that they are being mean, but they had found that for those of us who got stability only, the second half never seemed to make much diff.

    The good news is that I retained the stability for 2 years! That pretty much made it worth it - no treatment or side-effects for 2 years. Since I was symptom-free, stable is good!

    Also I came out of there with a healthy respect for the nurses. They had a really hard job. Taking us in, making us feel good, watching us deteriorate by day and having to clean up after us and still keeping their professional demeanor. Amazing.

    Good luck to you, and know that this will all be a dim memory some day.

    Max

    Made it throw round one.
    First up I may not spelll everything right.I my not quite focus.I was able to 12 doses.Don't know howmany I will get next time. I have some throwing up an The worst part for me Was the crazy. My husband (God Bless him) said I talked about some with expired tags for an hour or so. I don't rememeber it at all. I was constatly tring to get on of bed. Also could not stop moving my legs adn jerking my arms. Hope all of you a doing well. Which I could here from Jam66.Icame hme toady. Have not had a treament since last night aroun4 or 5. What do I do ablout the qatering eyes andbad coulgh?
  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Made it throw round one.
    First up I may not spelll everything right.I my not quite focus.I was able to 12 doses.Don't know howmany I will get next time. I have some throwing up an The worst part for me Was the crazy. My husband (God Bless him) said I talked about some with expired tags for an hour or so. I don't rememeber it at all. I was constatly tring to get on of bed. Also could not stop moving my legs adn jerking my arms. Hope all of you a doing well. Which I could here from Jam66.Icame hme toady. Have not had a treament since last night aroun4 or 5. What do I do ablout the qatering eyes andbad coulgh?

    Go Nanalou!!!
    Nana,

    My mom is 84 and refers to herself as a "tuff ol' broad", but shes got nothing on you, the weaker sex my butt! I am impressed by your grit and fortitude and I am praying for the results that you deserve.

    Hang in there,

    Gary
  • rae_rae
    rae_rae Member Posts: 300
    garym said:

    Go Nanalou!!!
    Nana,

    My mom is 84 and refers to herself as a "tuff ol' broad", but shes got nothing on you, the weaker sex my butt! I am impressed by your grit and fortitude and I am praying for the results that you deserve.

    Hang in there,

    Gary

    Wow
    Nancy, you are an amazing woman! In agreement with Gary 's prayers for success!

    All my best,
    Rae
  • foxhd
    foxhd Member Posts: 3,181
    rae_rae said:

    Wow
    Nancy, you are an amazing woman! In agreement with Gary 's prayers for success!

    All my best,
    Rae

    Proud
    Go Nan! So proud! So impressed! You are awesome! You are tougher than cancer expected. Your hospital caregivers must be bragging about you. Keep it going. You are the queen!
    Fox.