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Interleukin 2 here I come!

24

Comments

  • 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.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    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.

    Nancy the Warrior
    As Fox has acknowledged (worthwhile praise, coming from him!) that's quite some performance! You've got youth, strength and that little Daughter of yours on your side (is she 5 at present and doing well?).

    I'm astonished you've been able to communicate like this so soon after 12 doses of HDIL2. Only yesterday, one of the lynchpins of the ACOR KC thread mentioned that it took her 30 minutes to compose a 25 word message to that list following her first batch of 9 doses and she had to spend an extra day in hospital to unscramble her (very fine) brains. She is a total responder (about 10 years on - I forget the exact figure) and had had hundreds of lung mets. I so hope you're going to come out the same way Nancy.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    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?

    Congrats Nanalou!

    Codeine or oxycodone works well for the cough. Benadryl capsules for the watery eyes. I also had those side effects plus sneezing with blood speckled mucous.

    Congrats on completing round one! Don't say Phoenix Rising didn't tell ya, ya might go loco! I should have asked you to say hello to my black and white spotted elephant.
  • DMike
    DMike Member Posts: 259

    Congrats Nanalou!

    Codeine or oxycodone works well for the cough. Benadryl capsules for the watery eyes. I also had those side effects plus sneezing with blood speckled mucous.

    Congrats on completing round one! Don't say Phoenix Rising didn't tell ya, ya might go loco! I should have asked you to say hello to my black and white spotted elephant.

    Interleukin 2
    To all of you fighting the good fight with Interleukin 2, I'm thinking of you.

    You might be interested in a couple of well-written articles by a British journalist on his kidney cancer battle and his introduction to Interleukin 2. He's a Springsteen fan, so he's definitely a good guy :) Take care! --David

    July article:
    http://menmedia.co.uk/manchestereveningnews/news/s/1582432_im-determined-to-keep-fighting-men-chief-reporter-neal-keeling-bravely-writes-about-his-battle-with-cancer

    Yesterday's article dealing with IL2:
    http://menmedia.co.uk/manchestereveningnews/news/s/1589610_you-gonna-die-dad-men-chief-reporter-neal-keeling-writes-about-his-fight-to-beat-cancer
  • angec
    angec Member Posts: 924
    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?

    YOU GO NANALOU!!!
    WOW! What a hero you are!! So glad to see that you are tougher than cancer! You are very, very impressive!!! And since you didn't see the spotted elephant seems like you are ready to go again full strength when the time comes. Praying and cheering over here!! xxoo
  • NanaLou
    NanaLou Member Posts: 71
    angec said:

    YOU GO NANALOU!!!
    WOW! What a hero you are!! So glad to see that you are tougher than cancer! You are very, very impressive!!! And since you didn't see the spotted elephant seems like you are ready to go again full strength when the time comes. Praying and cheering over here!! xxoo

    Made it through round two!!
    I made it through 8 doses the second time. I called it quits due to extremely bad headaches. Hopefully these twenty doses will kick cancers butt!! If anybody did it with less, I would love to here from you. I will say I am doing better than last time. Might be the 4 less doses. Best of luck and prayers to all!!!!
  • pjune127
    pjune127 Member Posts: 127
    NanaLou said:

    Made it through round two!!
    I made it through 8 doses the second time. I called it quits due to extremely bad headaches. Hopefully these twenty doses will kick cancers butt!! If anybody did it with less, I would love to here from you. I will say I am doing better than last time. Might be the 4 less doses. Best of luck and prayers to all!!!!

    So impressive!
    You go girl! I am praying for you and I am incredibly proud of your bravery and strength. Girl power!!
  • alice124
    alice124 Member Posts: 896
    NanaLou said:

    Made it through round two!!
    I made it through 8 doses the second time. I called it quits due to extremely bad headaches. Hopefully these twenty doses will kick cancers butt!! If anybody did it with less, I would love to here from you. I will say I am doing better than last time. Might be the 4 less doses. Best of luck and prayers to all!!!!

    Round two
    Way to go NanaLou! I don't think the number of doses--once it gets beyond the minimum (7???)--makes any significant difference. In fact, I think an argument could be made on just the opposite. I remember John's first round--when he had the entire 14 doses--and our asking his doctor if it was a good sign that he took all 14. He responded, "it's incredible." But would never say it improved his response chances. I wonder now in looking back if maybe his ability to withstand 14 the first time and 10 the second time pointed to the HDIL not triggering the response we were hoping for, if that makes any sense.

    Will be waiting to hear good news on your scan.
  • strongmind
    strongmind Member Posts: 34
    alice124 said:

    Round two
    Way to go NanaLou! I don't think the number of doses--once it gets beyond the minimum (7???)--makes any significant difference. In fact, I think an argument could be made on just the opposite. I remember John's first round--when he had the entire 14 doses--and our asking his doctor if it was a good sign that he took all 14. He responded, "it's incredible." But would never say it improved his response chances. I wonder now in looking back if maybe his ability to withstand 14 the first time and 10 the second time pointed to the HDIL not triggering the response we were hoping for, if that makes any sense.

    Will be waiting to hear good news on your scan.

    Hi Everyone
    I have posted about my husband's RCC previously too.He completed his IL-2 last week. 1st round- took 10 doses, 2nd - 9, 3rd -9 and 4th - 8 doses.
    His last scans were excellent, most of tumors from lungs disappeared, few tiny ones were left. Brain was clear too. he had 3 brain mets too.
    Next scan is on Nov 19th, hoping for excellent results. All the best to everyone who ever is on this forum.

    Will keep you updated.
  • alice124
    alice124 Member Posts: 896

    Hi Everyone
    I have posted about my husband's RCC previously too.He completed his IL-2 last week. 1st round- took 10 doses, 2nd - 9, 3rd -9 and 4th - 8 doses.
    His last scans were excellent, most of tumors from lungs disappeared, few tiny ones were left. Brain was clear too. he had 3 brain mets too.
    Next scan is on Nov 19th, hoping for excellent results. All the best to everyone who ever is on this forum.

    Will keep you updated.

    YES!
    Exceptional news -- congratulations. Can't tell you how happy I am. There's something special about hearing about one's kidney cancer diagnosis and then watch treatment successfully attack it. Makes it personal to us all. Can never have too many success stories! Again, I'm thrilled for you and your husband. I so wish Toolman could have seen this prior to beginning his IL2 (today or yesterday I think).
  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Made it through round two!!
    I made it through 8 doses the second time. I called it quits due to extremely bad headaches. Hopefully these twenty doses will kick cancers butt!! If anybody did it with less, I would love to here from you. I will say I am doing better than last time. Might be the 4 less doses. Best of luck and prayers to all!!!!

    RCC don't stand a chance...
    NanaLou,

    I am soooo proud of you!!! Paula speaks of girl power and I couldn't agree more, virtual hugs to all of you. My mom refers to herself as "A tuff ole broad.", she's got nothing on the ladies, patient or caregiver, here, I continue to be amazed. ROCK ON!!!

    All the best,

    Gary