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Interleukin 2 here I come!

2

Comments

  • 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
  • NanaLou
    NanaLou Member Posts: 71
    garym said:

    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

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!
  • jam66
    jam66 Member Posts: 55
    NanaLou said:

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!

    Yay!!!
    Way to go NanaLou! I'm so so happy for you!

    This is the best Christmas gift you could ask for. :)))
  • jam66
    jam66 Member Posts: 55
    NanaLou said:

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!

    Yay!!!
    Way to go NanaLou! I'm so so happy for you!

    This is the best Christmas gift you could ask for. :)))
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jam66 said:

    Yay!!!
    Way to go NanaLou! I'm so so happy for you!

    This is the best Christmas gift you could ask for. :)))

    CT scan results
    Superb news Nancy!!

    You said in the past that you were carrying a little more weight than might be thought ideal and that has now probably helped in your handling the HDIL2 so brilliantly. This Christmas present and then a further round, founded on an excellent response already, after the holidays. Let's hope you're going to be one of the total responders, like Peggyz (who, in her highly intelligent profile said "my major side effect has been my complete health")
    - it's all very promising. Well done and have a great Christmas - I bet your little girl is so proud of her Mum!
  • foxhd
    foxhd Member Posts: 3,181

    CT scan results
    Superb news Nancy!!

    You said in the past that you were carrying a little more weight than might be thought ideal and that has now probably helped in your handling the HDIL2 so brilliantly. This Christmas present and then a further round, founded on an excellent response already, after the holidays. Let's hope you're going to be one of the total responders, like Peggyz (who, in her highly intelligent profile said "my major side effect has been my complete health")
    - it's all very promising. Well done and have a great Christmas - I bet your little girl is so proud of her Mum!

    WOW!!!!!
    FANTASTIC!!!!!!!!!!!!!! I'm willing to bet that if all they are seeing is active lymph nodes then they are swollen and just cleaning house. So Happy. FLY.
  • pjune127
    pjune127 Member Posts: 127
    NanaLou said:

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!

    What a spirit lifter!
    So excited for this good news. Made my day. I am so proud of you!
  • alice124
    alice124 Member Posts: 896
    NanaLou said:

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!

    Mery Christmas Nancy
    What a terrific Christmas present Nancy. Now on to enjoying the holiday...
  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Great News!!
    Got my scan results today. There is very small shrinkage!!! Which is wonderful! No new growth. I will take it. Much better than what I was fearing. I will go back for more IL2 in January. I only have it in lymph nodes. So the Dr. said it is hard to tell they may be swollen due to the IL2. So great news just in time for Christmas. Wishing all of you good health and a Merry Christmas!!

    Great News!!
    Nancy, Nancy, Nancy,

    You continue to AMAZE, AMAZE, AMAZE! Way to go !!! How often can you talk about shrinkage and make men happy? Merry Christmas to you and may the new year bring NED to everyone here.

    Rock on,

    Gary
  • NanaLou
    NanaLou Member Posts: 71
    garym said:

    Great News!!
    Nancy, Nancy, Nancy,

    You continue to AMAZE, AMAZE, AMAZE! Way to go !!! How often can you talk about shrinkage and make men happy? Merry Christmas to you and may the new year bring NED to everyone here.

    Rock on,

    Gary

    update

    Well I made it through 9 doses this time. For those of you who have not been through this. It is rough stuff. Those of you who will go through this in the furture. It can be done. I made it through 12 my first time and 8 my second. Now I have made it through 9 my third time and will upadte in a couple of weeks on how many I get the forth time. I think I am handling it a little better than the last time. I didn't go crazy at least. eyes are watery and I have a cough, joints are a little acky also. the itching has not started yet.  Hope everyone is doing well!

    Nancy 

  • NanaLou
    NanaLou Member Posts: 71
    NanaLou said:

    update

    Well I made it through 9 doses this time. For those of you who have not been through this. It is rough stuff. Those of you who will go through this in the furture. It can be done. I made it through 12 my first time and 8 my second. Now I have made it through 9 my third time and will upadte in a couple of weeks on how many I get the forth time. I think I am handling it a little better than the last time. I didn't go crazy at least. eyes are watery and I have a cough, joints are a little acky also. the itching has not started yet.  Hope everyone is doing well!

    Nancy 

    Good News

    Well I had my scan done on Friday and got the results today. All of the cancer is 8mm or less. I  am super excited about this. I will go back in and do another round of the dreaded Interleukin. And hopefully this will knock the rest of it out. Hope this finds everyone in good and improving health. And Tex--- I said it before and I'll say it again FAT GIRLS RULE!

     

    Nana Lou   

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NanaLou said:

    Good News

    Well I had my scan done on Friday and got the results today. All of the cancer is 8mm or less. I  am super excited about this. I will go back in and do another round of the dreaded Interleukin. And hopefully this will knock the rest of it out. Hope this finds everyone in good and improving health. And Tex--- I said it before and I'll say it again FAT GIRLS RULE!

     

    Nana Lou   

    Good news

    That's absolutely wonderful, Nancy!!  It sounds as though you'll soon be swelling the numbers of total responders.  It's very good news for people like David.  [Actually good news to me, too, being another mostly sarcomatoid case.]

    You are quite exceptional,  I should think, with an 11 cm primary and mets, 95% sarcomatoid, with some rhabdoid features, from original clear cell histology.  That's a stupendous recovery - a great tribute both to the doctors and to you.

    That Daughter of yours will be getting a lot bigger now and it's great that her Mum will be able to watch her grow up and make her way in life.

  • Mikeyswife
    Mikeyswife Member Posts: 31
    NanaLou said:

    Good News

    Well I had my scan done on Friday and got the results today. All of the cancer is 8mm or less. I  am super excited about this. I will go back in and do another round of the dreaded Interleukin. And hopefully this will knock the rest of it out. Hope this finds everyone in good and improving health. And Tex--- I said it before and I'll say it again FAT GIRLS RULE!

     

    Nana Lou   

    NanaLou You Rule!

    Awesome!  So glad to hear the good news.  Here's to the next round and complete response!

    Karen

  • foxhd
    foxhd Member Posts: 3,181
    NanaLou said:

    Good News

    Well I had my scan done on Friday and got the results today. All of the cancer is 8mm or less. I  am super excited about this. I will go back in and do another round of the dreaded Interleukin. And hopefully this will knock the rest of it out. Hope this finds everyone in good and improving health. And Tex--- I said it before and I'll say it again FAT GIRLS RULE!

     

    Nana Lou   

    Nana

    I think it's "Tough broads rule." Did you ever play football? Pity your opposition. How many sessions of IL2 can you get? I do know that if anything remains it responds much better to other treatments. Stories like yours remind me that I've had it real easy.

  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Good News

    Well I had my scan done on Friday and got the results today. All of the cancer is 8mm or less. I  am super excited about this. I will go back in and do another round of the dreaded Interleukin. And hopefully this will knock the rest of it out. Hope this finds everyone in good and improving health. And Tex--- I said it before and I'll say it again FAT GIRLS RULE!

     

    Nana Lou   

    That's not "good" news...

    That's "FANTASTIC" news, I am sooooo happy to hear it!!!

    Way to go Nana!

  • DMike
    DMike Member Posts: 259
    Motivation

    Nancy,

    Thanks for the motivation! You are tough. I'm with Fox, how many rounds of IL-2 can one take?

    I have my first infusion, on April 9th at 10:00 pm. The schedule is 6:00 am, 2:00 pm and 10:00 pm. I'll be at Vanderbilt University in Nashville, TN in the critical care tower. The more I learn about their IL-2 reputation and the facilities there, the more confident and relaxed I am...sort of! I'm scheduled to return for round 2 on April 23rd.

    Thanks again for the motivation.

    --David

  • NanaLou
    NanaLou Member Posts: 71
    DMike said:

    Motivation

    Nancy,

    Thanks for the motivation! You are tough. I'm with Fox, how many rounds of IL-2 can one take?

    I have my first infusion, on April 9th at 10:00 pm. The schedule is 6:00 am, 2:00 pm and 10:00 pm. I'll be at Vanderbilt University in Nashville, TN in the critical care tower. The more I learn about their IL-2 reputation and the facilities there, the more confident and relaxed I am...sort of! I'm scheduled to return for round 2 on April 23rd.

    Thanks again for the motivation.

    --David

    Thanks for the support

    I just want to say a be Thank you for all  the kind comments. Tex that girl of mine is growing up fast. She is about to finish Kindergarten. I can't believe the stuff she has learned this year.  Fox and Dmike-- I don't know how many round of IL2 you can get. After my first round I asked how many times we would do it, He said three to four more. I hope and think by the way he was talking this should be my last time. It all depends on how you react to the treatments and how the cancer shrinks. Dmike I am hoping and praying  the best for you. It is a rough treatment, but you can do it. I might see you there.

     

    Nana Lou  

  • NanaLou
    NanaLou Member Posts: 71
    NanaLou said:

    Thanks for the support

    I just want to say a be Thank you for all  the kind comments. Tex that girl of mine is growing up fast. She is about to finish Kindergarten. I can't believe the stuff she has learned this year.  Fox and Dmike-- I don't know how many round of IL2 you can get. After my first round I asked how many times we would do it, He said three to four more. I hope and think by the way he was talking this should be my last time. It all depends on how you react to the treatments and how the cancer shrinks. Dmike I am hoping and praying  the best for you. It is a rough treatment, but you can do it. I might see you there.

     

    Nana Lou  

    Latest Scan results

    Well I go the results from my last scan done on Saturday today. There is no change. I am stable. Still just two spots  at 8mm each. Doctor is thinking it could just be scar tissue or dead tissue.  We will follow up with scans in three months to  keep and eye on it. Doctor said alot of times when spots this small are cut out and tested they are on longer cancer. This is what I am hoping and praying mine are. He told me that there is a 60% chance I am cured. He is calling my results a full response.

    Prayers to all,

    Nancy

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NanaLou said:

    Latest Scan results

    Well I go the results from my last scan done on Saturday today. There is no change. I am stable. Still just two spots  at 8mm each. Doctor is thinking it could just be scar tissue or dead tissue.  We will follow up with scans in three months to  keep and eye on it. Doctor said alot of times when spots this small are cut out and tested they are on longer cancer. This is what I am hoping and praying mine are. He told me that there is a 60% chance I am cured. He is calling my results a full response.

    Prayers to all,

    Nancy

    Latest scan results

    Nancy, that's wonderful - yours is one of the best cases I can remember in a long time.  You're in the prime of life, with everything to live for, but your pathology was bad, with the major sarcomatoid element making it highly aggressive.  It was caught early but late enough to have had a pretty dismal prognosis, and now look at you!!! 

    You've not posted much in quite a long while so a lot of current members won't know you.  Are you, would you say, that rare example of someone with heavily sarcomatoid clear cell who has been treated with HD IL2? Your experience gives strong encouragement to David and to Fox (though they are both particularly gutsy guys, like yourself, and don't need assistance in being positive!) and to anyone else with a not too brilliant pathology.

    The great Steve Dunn reckoned that immunotherapy (which in his time amounted to just HD IL2) held a lot of promise for treating sRCC as a histology characterised by aggressive behaviour and very rapid cell division - the same reason why the experts think some of the old chemos, such as gemcitabine with doxorubicin, are particularly appropriate.   The big difference is that IL2 is a natural substance with short-lived side-effects that are fully reversible without residual damage, unlike the synthetic chemos which do some inevitable permanent damage, whether or not they turn out to be successful treatments.

    Perhaps, for the benefit of our fellow sarcy warriors, you can also add a piece to the "Sarcomatoid"  thread (which you, yourself started, back in Dec 2011) which seems to have fallen into desuetude - a pity, since it's a good resource? 

    Here's to you, Nancy, and to your continuing well-deserved success.

    Your determined attitude and your courage make you a worthy recipient of such a good outcome. Family and friends must be very proud of you.  How old is that little girl now - 6?

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NanaLou said:

    Latest Scan results

    Well I go the results from my last scan done on Saturday today. There is no change. I am stable. Still just two spots  at 8mm each. Doctor is thinking it could just be scar tissue or dead tissue.  We will follow up with scans in three months to  keep and eye on it. Doctor said alot of times when spots this small are cut out and tested they are on longer cancer. This is what I am hoping and praying mine are. He told me that there is a 60% chance I am cured. He is calling my results a full response.

    Prayers to all,

    Nancy

    Latest scan results

    [Slightly expanded version below]

  • garym
    garym Member Posts: 1,647
    NanaLou said:

    Latest Scan results

    Well I go the results from my last scan done on Saturday today. There is no change. I am stable. Still just two spots  at 8mm each. Doctor is thinking it could just be scar tissue or dead tissue.  We will follow up with scans in three months to  keep and eye on it. Doctor said alot of times when spots this small are cut out and tested they are on longer cancer. This is what I am hoping and praying mine are. He told me that there is a 60% chance I am cured. He is calling my results a full response.

    Prayers to all,

    Nancy

    FANTASTIC!!!

    Nancy, that is such great and well deserved news, you must be thrilled!  Its wonderful to hear you are doing so well.