› Forums › General Melanoma Community › To Leukine or Not to Leukine?
- This topic has 39 replies, 8 voices, and was last updated 10 years, 11 months ago by
browneyesangelreba.
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- August 18, 2012 at 5:40 pm
Hi Everyone,
I had 2 more surgeries this summer because of intransits/satellites. I will be restaged in a few weeks. I'm not sure if I'll stay at 3C or move to 4…time will tell. I think I will be doing a little radiation in the next few weeks.
I am supposedly NED (although no recent PET), so there is not much out there for treatment. My one oncologist wants me to do Leukine. My other oncologist says it's nothing more than snake oil and I should just watch and wait. I am so confused!
Hi Everyone,
I had 2 more surgeries this summer because of intransits/satellites. I will be restaged in a few weeks. I'm not sure if I'll stay at 3C or move to 4…time will tell. I think I will be doing a little radiation in the next few weeks.
I am supposedly NED (although no recent PET), so there is not much out there for treatment. My one oncologist wants me to do Leukine. My other oncologist says it's nothing more than snake oil and I should just watch and wait. I am so confused!
If any of you have any information or experiences to share about Leukine, I would be truly grateful. As always, I look to my MPIP family for real advice.
Thanking you in advance for any help you can offer. Additionally, let's keep working together to kill the beast!
Tricia
- Replies
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- August 18, 2012 at 7:58 pm
My husband did Leukine in 08. He was told originally he would be on it for 2 years. At the end of one year he was removed from the treatment. Dr Kendra stated there was no benefit or difference between one and two year treatment. He remainded NED while on the treatment and 4 months after he stopped the treatment he was full of tumors in his lungs. I have always felt in my gut that it was the leukine that kept his immune system working. It has since been rethought and there are patients on it for 3 years or longer. Dr Spiter in California is the expert. We didn't want to do nothing.
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- August 18, 2012 at 7:58 pm
My husband did Leukine in 08. He was told originally he would be on it for 2 years. At the end of one year he was removed from the treatment. Dr Kendra stated there was no benefit or difference between one and two year treatment. He remainded NED while on the treatment and 4 months after he stopped the treatment he was full of tumors in his lungs. I have always felt in my gut that it was the leukine that kept his immune system working. It has since been rethought and there are patients on it for 3 years or longer. Dr Spiter in California is the expert. We didn't want to do nothing.
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- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
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- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
-
- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
-
- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
-
- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
-
- May 6, 2013 at 2:32 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
-
- August 18, 2012 at 7:58 pm
My husband did Leukine in 08. He was told originally he would be on it for 2 years. At the end of one year he was removed from the treatment. Dr Kendra stated there was no benefit or difference between one and two year treatment. He remainded NED while on the treatment and 4 months after he stopped the treatment he was full of tumors in his lungs. I have always felt in my gut that it was the leukine that kept his immune system working. It has since been rethought and there are patients on it for 3 years or longer. Dr Spiter in California is the expert. We didn't want to do nothing.
-
- August 19, 2012 at 1:03 am
I did 3 years of Leukine after being diagnosed Stage 4 in 2000 (met in lung, surgically removed). The melanoma returned in my bones in 2011 – but did the Leukine help and delay the recurrence? We'll never know….
Like so much else with this disease, it's all a crapshoot.
Best wishes,
Harry
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- August 19, 2012 at 1:03 am
I did 3 years of Leukine after being diagnosed Stage 4 in 2000 (met in lung, surgically removed). The melanoma returned in my bones in 2011 – but did the Leukine help and delay the recurrence? We'll never know….
Like so much else with this disease, it's all a crapshoot.
Best wishes,
Harry
-
- August 19, 2012 at 1:03 am
I did 3 years of Leukine after being diagnosed Stage 4 in 2000 (met in lung, surgically removed). The melanoma returned in my bones in 2011 – but did the Leukine help and delay the recurrence? We'll never know….
Like so much else with this disease, it's all a crapshoot.
Best wishes,
Harry
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- August 19, 2012 at 4:54 pm
You can read about my husband and his nodular melanoma on my profile but…
He did the year Leukine and at this point is NED almost 2 years since his treatment ended. His came back in the lymph node under his arm, 5 cm. with extranodal extension so it was pretty serious 18 months after his first diagnosis. He had radiation to axilla area and began the Leukine. We feel for him anyway it was a good choice over interferon. We also have a friend who has been Stage IV for 10 years and was treated at the Mayo Clinic with a clinical trial that included Leukine in its formula. She also is NED. So we do feel for at least some people it can be successful. Good luck on your decision.
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- August 19, 2012 at 4:54 pm
You can read about my husband and his nodular melanoma on my profile but…
He did the year Leukine and at this point is NED almost 2 years since his treatment ended. His came back in the lymph node under his arm, 5 cm. with extranodal extension so it was pretty serious 18 months after his first diagnosis. He had radiation to axilla area and began the Leukine. We feel for him anyway it was a good choice over interferon. We also have a friend who has been Stage IV for 10 years and was treated at the Mayo Clinic with a clinical trial that included Leukine in its formula. She also is NED. So we do feel for at least some people it can be successful. Good luck on your decision.
-
- August 19, 2012 at 4:54 pm
You can read about my husband and his nodular melanoma on my profile but…
He did the year Leukine and at this point is NED almost 2 years since his treatment ended. His came back in the lymph node under his arm, 5 cm. with extranodal extension so it was pretty serious 18 months after his first diagnosis. He had radiation to axilla area and began the Leukine. We feel for him anyway it was a good choice over interferon. We also have a friend who has been Stage IV for 10 years and was treated at the Mayo Clinic with a clinical trial that included Leukine in its formula. She also is NED. So we do feel for at least some people it can be successful. Good luck on your decision.
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- August 19, 2012 at 11:14 pm
Hi
I was stage 1b and did leukine for 9 month. I stopped taking leukine when I got my recurrence. I have had 3 recurrences since taking leukine
Bottomline, every treatment is a "crap shoot", working for some & not others.
The results of other people taking leukine has no bearing if it will work for you. You need to make the decision for yourself.
Good Luck,
Mary
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- August 19, 2012 at 11:14 pm
Hi
I was stage 1b and did leukine for 9 month. I stopped taking leukine when I got my recurrence. I have had 3 recurrences since taking leukine
Bottomline, every treatment is a "crap shoot", working for some & not others.
The results of other people taking leukine has no bearing if it will work for you. You need to make the decision for yourself.
Good Luck,
Mary
-
- August 19, 2012 at 11:14 pm
Hi
I was stage 1b and did leukine for 9 month. I stopped taking leukine when I got my recurrence. I have had 3 recurrences since taking leukine
Bottomline, every treatment is a "crap shoot", working for some & not others.
The results of other people taking leukine has no bearing if it will work for you. You need to make the decision for yourself.
Good Luck,
Mary
-
- August 21, 2012 at 1:57 am
Hi Tricia,
I finished a year of Leukine 3 years ago and haven't had a recurrence. I found the treatment fairly easy. Towards the end of a 14 day cycle my legs and joints would hurt, and sometimes I would have a headache and feel crummy, but it didn't stop me from doing anything I really wanted to do. I can't say it (or the other treatment besides surgery) has kept me NED, but I'm glad I've done it.
A now long gone MPIPer gave me the advice to
1) do my research,
2) question my doctor,
3) make a decision and go for it.
4) Don't' look back and second guess yourself.
You're long down this list yourself!
Blessings,
Julie
-
- August 21, 2012 at 1:57 am
Hi Tricia,
I finished a year of Leukine 3 years ago and haven't had a recurrence. I found the treatment fairly easy. Towards the end of a 14 day cycle my legs and joints would hurt, and sometimes I would have a headache and feel crummy, but it didn't stop me from doing anything I really wanted to do. I can't say it (or the other treatment besides surgery) has kept me NED, but I'm glad I've done it.
A now long gone MPIPer gave me the advice to
1) do my research,
2) question my doctor,
3) make a decision and go for it.
4) Don't' look back and second guess yourself.
You're long down this list yourself!
Blessings,
Julie
-
- August 21, 2012 at 9:59 am
Hi,
I did about 7 or 8 months of Leukine and worked full time. I had a re-occurence and my oncologist had me stop and I moved on to another treatment (isolated limb perfusion or radiation, I forget which, see my profile). I believe that every treatment I have done has bought me time until the next well researched treatment seemed reasonable to do. Please review my profile for more details as it has been several years now and I am forgetting some of the earlier treatment side effects. I was never comfortable doing "nothing" and something that could rev up my immune system seemed like a good idea and I didnt suffer extensively doing the treatment.
Vermont_Donna, stage 3a, NED
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- August 21, 2012 at 9:59 am
Hi,
I did about 7 or 8 months of Leukine and worked full time. I had a re-occurence and my oncologist had me stop and I moved on to another treatment (isolated limb perfusion or radiation, I forget which, see my profile). I believe that every treatment I have done has bought me time until the next well researched treatment seemed reasonable to do. Please review my profile for more details as it has been several years now and I am forgetting some of the earlier treatment side effects. I was never comfortable doing "nothing" and something that could rev up my immune system seemed like a good idea and I didnt suffer extensively doing the treatment.
Vermont_Donna, stage 3a, NED
-
- August 21, 2012 at 9:59 am
Hi,
I did about 7 or 8 months of Leukine and worked full time. I had a re-occurence and my oncologist had me stop and I moved on to another treatment (isolated limb perfusion or radiation, I forget which, see my profile). I believe that every treatment I have done has bought me time until the next well researched treatment seemed reasonable to do. Please review my profile for more details as it has been several years now and I am forgetting some of the earlier treatment side effects. I was never comfortable doing "nothing" and something that could rev up my immune system seemed like a good idea and I didnt suffer extensively doing the treatment.
Vermont_Donna, stage 3a, NED
-
- August 22, 2012 at 3:34 am
Hey Mary,
Yes I'm back in So Cal. I lurk on the board fairly often. I like to keep up and see how folks are doing, but don't post often, just when I have something to add. I'm doing well– finishing my dissertation! 3 years ago I didn't think I'd be able to do it, but with lots of grace from the school (regarding timing and deadlines and whatnots) and me feeling great, I think I may finish! Thanks for asking.
I haven't seen Dr. O'Day. Unfortunately,he doesn't take my insurance any longer. At my last check up I went back to the Angeles Clinic and saw Dr. Boasberg and he was fine. Check up was good too, "Perfect!" But for my next check I may need to switch to someone else, though. The clinic now no longer takes my insurance, and I was left with a hefty bill. Thankfully they discounted it for me. Bless them!
Trust you're well!
Julie
-
- August 22, 2012 at 3:34 am
Hey Mary,
Yes I'm back in So Cal. I lurk on the board fairly often. I like to keep up and see how folks are doing, but don't post often, just when I have something to add. I'm doing well– finishing my dissertation! 3 years ago I didn't think I'd be able to do it, but with lots of grace from the school (regarding timing and deadlines and whatnots) and me feeling great, I think I may finish! Thanks for asking.
I haven't seen Dr. O'Day. Unfortunately,he doesn't take my insurance any longer. At my last check up I went back to the Angeles Clinic and saw Dr. Boasberg and he was fine. Check up was good too, "Perfect!" But for my next check I may need to switch to someone else, though. The clinic now no longer takes my insurance, and I was left with a hefty bill. Thankfully they discounted it for me. Bless them!
Trust you're well!
Julie
-
- August 22, 2012 at 3:34 am
Hey Mary,
Yes I'm back in So Cal. I lurk on the board fairly often. I like to keep up and see how folks are doing, but don't post often, just when I have something to add. I'm doing well– finishing my dissertation! 3 years ago I didn't think I'd be able to do it, but with lots of grace from the school (regarding timing and deadlines and whatnots) and me feeling great, I think I may finish! Thanks for asking.
I haven't seen Dr. O'Day. Unfortunately,he doesn't take my insurance any longer. At my last check up I went back to the Angeles Clinic and saw Dr. Boasberg and he was fine. Check up was good too, "Perfect!" But for my next check I may need to switch to someone else, though. The clinic now no longer takes my insurance, and I was left with a hefty bill. Thankfully they discounted it for me. Bless them!
Trust you're well!
Julie
-
- August 21, 2012 at 1:57 am
Hi Tricia,
I finished a year of Leukine 3 years ago and haven't had a recurrence. I found the treatment fairly easy. Towards the end of a 14 day cycle my legs and joints would hurt, and sometimes I would have a headache and feel crummy, but it didn't stop me from doing anything I really wanted to do. I can't say it (or the other treatment besides surgery) has kept me NED, but I'm glad I've done it.
A now long gone MPIPer gave me the advice to
1) do my research,
2) question my doctor,
3) make a decision and go for it.
4) Don't' look back and second guess yourself.
You're long down this list yourself!
Blessings,
Julie
-
- August 21, 2012 at 2:39 pm
Thank you to all of you for sharing your experiences with me regarding Leukine. I visited with the radiation oncologist yesterday and he said no to more radiation. Basically, he said that the melanoma was branching out in all directions and to radiate "new" areas would be a waste of time because we know the melanoma cells would still be in the already radiated area. A lot of tissues needed during the ride home! So my choice is Leukine or nothing. I'll keep you all posted.
Again, thanks so much for helping shine some light on the dark times!
Tricia
-
- August 21, 2012 at 2:39 pm
Thank you to all of you for sharing your experiences with me regarding Leukine. I visited with the radiation oncologist yesterday and he said no to more radiation. Basically, he said that the melanoma was branching out in all directions and to radiate "new" areas would be a waste of time because we know the melanoma cells would still be in the already radiated area. A lot of tissues needed during the ride home! So my choice is Leukine or nothing. I'll keep you all posted.
Again, thanks so much for helping shine some light on the dark times!
Tricia
-
- August 21, 2012 at 2:39 pm
Thank you to all of you for sharing your experiences with me regarding Leukine. I visited with the radiation oncologist yesterday and he said no to more radiation. Basically, he said that the melanoma was branching out in all directions and to radiate "new" areas would be a waste of time because we know the melanoma cells would still be in the already radiated area. A lot of tissues needed during the ride home! So my choice is Leukine or nothing. I'll keep you all posted.
Again, thanks so much for helping shine some light on the dark times!
Tricia
-
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