› Forums › General Melanoma Community › Leukin
- This topic has 24 replies, 6 voices, and was last updated 10 years, 8 months ago by cherylobrien.
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- October 5, 2011 at 2:49 am
My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month. Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy.
My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month. Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy.
Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin. He would inject this daily for 14 days and then be off the medication for 14 days. This would continue for 3 years. He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication. He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects.
Has anyone been on this medication? Any suggestions?
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- October 5, 2011 at 3:05 am
No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.
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- October 5, 2011 at 3:05 am
No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.
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- October 5, 2011 at 3:05 am
No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.
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- October 5, 2011 at 3:37 am
Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
is well worth considering. It has been found to change the nature of melanoma in some
people, making any new tumours more manageable with surgery. See:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukineHope this helps.
Frank from Australia
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- October 6, 2011 at 1:39 am
Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
be the way that Firefox is set up. So, try this instead:
http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29If that doesn't work, copy and paste the following into the search box at the top of the
page – NED at Stage IV and GM-CSF (Leukine)Best wishes
Frank from Australia
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- October 6, 2011 at 1:39 am
Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
be the way that Firefox is set up. So, try this instead:
http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29If that doesn't work, copy and paste the following into the search box at the top of the
page – NED at Stage IV and GM-CSF (Leukine)Best wishes
Frank from Australia
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- October 6, 2011 at 1:39 am
Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
be the way that Firefox is set up. So, try this instead:
http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29If that doesn't work, copy and paste the following into the search box at the top of the
page – NED at Stage IV and GM-CSF (Leukine)Best wishes
Frank from Australia
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- October 5, 2011 at 3:37 am
Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
is well worth considering. It has been found to change the nature of melanoma in some
people, making any new tumours more manageable with surgery. See:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukineHope this helps.
Frank from Australia
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- October 5, 2011 at 3:37 am
Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
is well worth considering. It has been found to change the nature of melanoma in some
people, making any new tumours more manageable with surgery. See:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukineHope this helps.
Frank from Australia
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- October 5, 2011 at 5:04 am
My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.
As far as the interferon, your comments are correct! So why would they even suggest that he takes it? I would avoid that trial.
My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc! I suggest doing more homework on only using Leukin to fight his melanoma.
Best wishes,
Gene (stage IV on a Yervoy with GM-CSF trial)
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- October 5, 2011 at 5:04 am
My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.
As far as the interferon, your comments are correct! So why would they even suggest that he takes it? I would avoid that trial.
My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc! I suggest doing more homework on only using Leukin to fight his melanoma.
Best wishes,
Gene (stage IV on a Yervoy with GM-CSF trial)
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- October 5, 2011 at 5:04 am
My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.
As far as the interferon, your comments are correct! So why would they even suggest that he takes it? I would avoid that trial.
My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc! I suggest doing more homework on only using Leukin to fight his melanoma.
Best wishes,
Gene (stage IV on a Yervoy with GM-CSF trial)
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- October 5, 2011 at 12:50 pm
Hi,
I`m sorry about your husbands diagnosis.
I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0!
Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.So, I advice you to really consider your possibilities according to what life-quality they can offer you!
Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!
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- October 5, 2011 at 12:50 pm
Hi,
I`m sorry about your husbands diagnosis.
I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0!
Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.So, I advice you to really consider your possibilities according to what life-quality they can offer you!
Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!
-
- October 5, 2011 at 12:50 pm
Hi,
I`m sorry about your husbands diagnosis.
I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0!
Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.So, I advice you to really consider your possibilities according to what life-quality they can offer you!
Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!
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- October 6, 2011 at 4:56 pm
Hi,
My name is Sharon and my husband is Brent. This is his story with Leukine, Back in 2007 Brents melanoma presented under his toenail. Acural melanoma. His toe was amputated and lymph nodes involved were removed, Staged IIIc. We went to OHIO state university to see Dr Kari Kendra, There was a trial for Leukine and Brent started in Nov. of 2007. He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose??????? What the heck,? I knew from MY studies that people on the west coast were on the injections for 2 or 3 more years.
Fast forward to May of 2009. Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs.
He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable.
Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know. Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.
The side effects were very very mild and he worked the whole year while on the study.
Hope this helps,
Sharon and Brent
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- October 6, 2011 at 4:56 pm
Hi,
My name is Sharon and my husband is Brent. This is his story with Leukine, Back in 2007 Brents melanoma presented under his toenail. Acural melanoma. His toe was amputated and lymph nodes involved were removed, Staged IIIc. We went to OHIO state university to see Dr Kari Kendra, There was a trial for Leukine and Brent started in Nov. of 2007. He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose??????? What the heck,? I knew from MY studies that people on the west coast were on the injections for 2 or 3 more years.
Fast forward to May of 2009. Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs.
He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable.
Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know. Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.
The side effects were very very mild and he worked the whole year while on the study.
Hope this helps,
Sharon and Brent
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- October 6, 2011 at 4:56 pm
Hi,
My name is Sharon and my husband is Brent. This is his story with Leukine, Back in 2007 Brents melanoma presented under his toenail. Acural melanoma. His toe was amputated and lymph nodes involved were removed, Staged IIIc. We went to OHIO state university to see Dr Kari Kendra, There was a trial for Leukine and Brent started in Nov. of 2007. He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose??????? What the heck,? I knew from MY studies that people on the west coast were on the injections for 2 or 3 more years.
Fast forward to May of 2009. Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs.
He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable.
Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know. Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.
The side effects were very very mild and he worked the whole year while on the study.
Hope this helps,
Sharon and Brent
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- July 5, 2013 at 7:10 pm
Hi,
My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013. He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation. The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck. The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now. He started taking the Leukine injections in conjunction with ippi (yervoy) infusions. 14 days of injections and 7 days off after each infusion. We will do another PET Scan at the end of the 4 infusion/injection cycle.
Cheryl
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- July 5, 2013 at 7:10 pm
Hi,
My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013. He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation. The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck. The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now. He started taking the Leukine injections in conjunction with ippi (yervoy) infusions. 14 days of injections and 7 days off after each infusion. We will do another PET Scan at the end of the 4 infusion/injection cycle.
Cheryl
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- July 5, 2013 at 7:10 pm
Hi,
My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013. He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation. The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck. The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now. He started taking the Leukine injections in conjunction with ippi (yervoy) infusions. 14 days of injections and 7 days off after each infusion. We will do another PET Scan at the end of the 4 infusion/injection cycle.
Cheryl
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