Stage IIIC Radiation/Leukine

I was also diagnosed Stage IIIC Dec., 2010 and also decided against interferon.  Had all lymph nodes 

removed from right inguinal area and iliac nodes as well – quite extensive as you know.  

My Docs at Melanoma Research Center, San Francisco advised that I do 30 days radiation (5 weeks).

I found the radiation easy to tolerate, and it did not substantially increase my lymphedema which I

had before beginning radiation.

I have moderate lymphadema which I control with a compression stocking, and I also purchased a

sequential lymphedema pump that I use almost every evening while relaxing at home.  The swelling

in my leg has IMPROVED over time.  I am also slender and  I believe it helps because rogue lymph

fluid tends to collect in fatty areas.

Hope this helps!

I was also diagnosed Stage IIIC Dec., 2010 and also decided against interferon.  Had all lymph nodes 

removed from right inguinal area and iliac nodes as well – quite extensive as you know.  

My Docs at Melanoma Research Center, San Francisco advised that I do 30 days radiation (5 weeks).

I found the radiation easy to tolerate, and it did not substantially increase my lymphedema which I

had before beginning radiation.

I have moderate lymphadema which I control with a compression stocking, and I also purchased a

sequential lymphedema pump that I use almost every evening while relaxing at home.  The swelling

in my leg has IMPROVED over time.  I am also slender and  I believe it helps because rogue lymph

fluid tends to collect in fatty areas.

Hope this helps!

I was also diagnosed Stage IIIC Dec., 2010 and also decided against interferon.  Had all lymph nodes 

removed from right inguinal area and iliac nodes as well – quite extensive as you know.  

My Docs at Melanoma Research Center, San Francisco advised that I do 30 days radiation (5 weeks).

I found the radiation easy to tolerate, and it did not substantially increase my lymphedema which I

had before beginning radiation.

I have moderate lymphadema which I control with a compression stocking, and I also purchased a

sequential lymphedema pump that I use almost every evening while relaxing at home.  The swelling

in my leg has IMPROVED over time.  I am also slender and  I believe it helps because rogue lymph

fluid tends to collect in fatty areas.

Hope this helps!

Mayo offered me Leukine injections as well but I said no. Later the onc there said I made the right decision to go for a trial instead because Leukine injections did not prove to extend life expectancy in patients with Melanoma in the lymph nodes. I had one lymph node with a 6.8 cent melanoma at the widest base until having a thoracotomy at Mayo. They offered the Leukine after surgery. Before they had me on radiation and Temodar. Radiation shrunk it by 1/3.

Mayo offered me Leukine injections as well but I said no. Later the onc there said I made the right decision to go for a trial instead because Leukine injections did not prove to extend life expectancy in patients with Melanoma in the lymph nodes. I had one lymph node with a 6.8 cent melanoma at the widest base until having a thoracotomy at Mayo. They offered the Leukine after surgery. Before they had me on radiation and Temodar. Radiation shrunk it by 1/3.

Mayo offered me Leukine injections as well but I said no. Later the onc there said I made the right decision to go for a trial instead because Leukine injections did not prove to extend life expectancy in patients with Melanoma in the lymph nodes. I had one lymph node with a 6.8 cent melanoma at the widest base until having a thoracotomy at Mayo. They offered the Leukine after surgery. Before they had me on radiation and Temodar. Radiation shrunk it by 1/3.

Julie, I was diagnosed stage 3C in Dec 2010.  My oncs feel that melanoma does show some response to high dose radiation.  After surgery I received 5 high dose fractions over a 12 day period then proceeded with other treatments (in my case Interferon).  As you stated, there doesn't seem to be a consensus on radiation, or much else for that matter, when it come to mel.  I figured that since the radiation would be completed over such a short period of time it wouldn't delay any other treatments for very long, so i decided to go for it all.  The radiation had very little side effects and I did remain NED for almost 2 years. I hope this is of some help to you. 

FrankD

Julie, I was diagnosed stage 3C in Dec 2010.  My oncs feel that melanoma does show some response to high dose radiation.  After surgery I received 5 high dose fractions over a 12 day period then proceeded with other treatments (in my case Interferon).  As you stated, there doesn't seem to be a consensus on radiation, or much else for that matter, when it come to mel.  I figured that since the radiation would be completed over such a short period of time it wouldn't delay any other treatments for very long, so i decided to go for it all.  The radiation had very little side effects and I did remain NED for almost 2 years. I hope this is of some help to you. 

FrankD

Julie, I was diagnosed stage 3C in Dec 2010.  My oncs feel that melanoma does show some response to high dose radiation.  After surgery I received 5 high dose fractions over a 12 day period then proceeded with other treatments (in my case Interferon).  As you stated, there doesn't seem to be a consensus on radiation, or much else for that matter, when it come to mel.  I figured that since the radiation would be completed over such a short period of time it wouldn't delay any other treatments for very long, so i decided to go for it all.  The radiation had very little side effects and I did remain NED for almost 2 years. I hope this is of some help to you. 

FrankD

I's  would like to let you know of my husband's experience with leukine and radiation.

He was first diagnosed with nodular melanoma in April, 2008.  It was 3.4 mm and Clark Stage IV so he was deemed Stage IIB after wide excision and SNB.  All was clear.  Took a watch and wait approach.  In Oct. 2009 dermatologist found a lump under his left arm (original melanoma was on left forearm).  He sent him to an oncologist in Iowa City, Iowa.  The lymph node was 5 cm and he had surgery to remove 32 nodes, with only the one with melanoma but it did show extranodal extension.  Oncologist and radiation Dr. said if he did not have radiation, because of the extra nodal extension he was 80 per cent sure of having a recurrance under his arm.  So, he had 5 high dose radiation treatments in two weeks and then he began leukine treatments which continued for one year.  I gave him the shots, other than red welts and some bone pain in his legs he really had no problems with it at all and continued life as normal.  He finished treatment in Nov. 2010.  In January, 2011 they thought he had melanoma in left shoulder blade but since it was so small they decided to just do monthly MRI's until it became large enough to biospy.  By May, 2011 it had showed no growth so they decided that it was not melanoma and he has no problems of any kind since.  He had a PET Scan in Sept. 2011 which was all clear.  During the time since the nodal recurrance PET Scans did show lung lesions and colon lesions but after testing all proved to be nothing, no more melanoma.  At this time he is considered NED and for him we feel the leukine was the best treatment.  I just read an article on Oncology Stats that said they have that interferon for Stage III is showing no effect at all so his oncologist did right by steering him away from that choice.  He said that Stage IIIB is a hard place to be as most clinical trials do not include  you at this point.

Anyway, yes, he does have lymphedema.  It occured about six months after his radiation but not real bad and would come and go.  Last January though it came back with a vengeance and his arm was huge.  He went for physical therapy and had arm wrapped and did this for about 4 months with limited success.  They recommended a pump for home use to keep fluid draining and it has worked very well.  He uses it twice a day while reading the paper or watching TV .  Most of the time the swelling stays down with this therapy and he has no problems.  His melanoma Dr. said for now he will only come back once every six months for a skin check but no more scans of any kind unless he has symptoms of something.  Not sure if this is proper for this stage but you have to trust someone. Oh yes, and while he has been having his melanoma battle he also developed a condition called LyP which is a benign skin lymphoma.  It is just an annoying skin rash which resolves on its own as mild as his has been.  Not a very common condition and his oncologist is not a bit concerned about it having any connection to the melanoma. 

 

So, at this stage of the disease we think he did the right treatment with Leukine.  We know of three others in our area who are Stage IV who used the leukine and yes, theirs did come back but was very treatable with surgery and are doing just fine and have been now for anywhere  from 2 4 years at Stage IV.  Even with the lymphedema he is glad that he did the radiation.  It was simple, only caused a mild burn which was easily taken care of with creams.  He did lost the whiskers on his left side of his face and underarm hair but it came back after a time. 

 

I think melanoma is a personal decision between each patients Dr. and himself/herself.  You cannot go by how others cancer comes back as each makeup is different.  Go with what you think is best for you and then forget about it as much as you can.  We know every day that his melanoma can come back but until it does we are going on about life as normal.    Oh yes, and the surgeon who did his SNB said that he thinks he must have not gotten the right node when it checked it out for it to come back in a year and a half so large in the axilla area.  We were amazed that he would admit that but he was a good surgeon and readily admitted his doubts of what he had done.  They are only human. 

 

If you have any questions you can email me at [email protected]

 

I don't post much but when I saw you questions I thought maybe this information could help you. 

 

Ann Gerst from Mediapolis, Iowa

I's  would like to let you know of my husband's experience with leukine and radiation.

He was first diagnosed with nodular melanoma in April, 2008.  It was 3.4 mm and Clark Stage IV so he was deemed Stage IIB after wide excision and SNB.  All was clear.  Took a watch and wait approach.  In Oct. 2009 dermatologist found a lump under his left arm (original melanoma was on left forearm).  He sent him to an oncologist in Iowa City, Iowa.  The lymph node was 5 cm and he had surgery to remove 32 nodes, with only the one with melanoma but it did show extranodal extension.  Oncologist and radiation Dr. said if he did not have radiation, because of the extra nodal extension he was 80 per cent sure of having a recurrance under his arm.  So, he had 5 high dose radiation treatments in two weeks and then he began leukine treatments which continued for one year.  I gave him the shots, other than red welts and some bone pain in his legs he really had no problems with it at all and continued life as normal.  He finished treatment in Nov. 2010.  In January, 2011 they thought he had melanoma in left shoulder blade but since it was so small they decided to just do monthly MRI's until it became large enough to biospy.  By May, 2011 it had showed no growth so they decided that it was not melanoma and he has no problems of any kind since.  He had a PET Scan in Sept. 2011 which was all clear.  During the time since the nodal recurrance PET Scans did show lung lesions and colon lesions but after testing all proved to be nothing, no more melanoma.  At this time he is considered NED and for him we feel the leukine was the best treatment.  I just read an article on Oncology Stats that said they have that interferon for Stage III is showing no effect at all so his oncologist did right by steering him away from that choice.  He said that Stage IIIB is a hard place to be as most clinical trials do not include  you at this point.

Anyway, yes, he does have lymphedema.  It occured about six months after his radiation but not real bad and would come and go.  Last January though it came back with a vengeance and his arm was huge.  He went for physical therapy and had arm wrapped and did this for about 4 months with limited success.  They recommended a pump for home use to keep fluid draining and it has worked very well.  He uses it twice a day while reading the paper or watching TV .  Most of the time the swelling stays down with this therapy and he has no problems.  His melanoma Dr. said for now he will only come back once every six months for a skin check but no more scans of any kind unless he has symptoms of something.  Not sure if this is proper for this stage but you have to trust someone. Oh yes, and while he has been having his melanoma battle he also developed a condition called LyP which is a benign skin lymphoma.  It is just an annoying skin rash which resolves on its own as mild as his has been.  Not a very common condition and his oncologist is not a bit concerned about it having any connection to the melanoma. 

 

So, at this stage of the disease we think he did the right treatment with Leukine.  We know of three others in our area who are Stage IV who used the leukine and yes, theirs did come back but was very treatable with surgery and are doing just fine and have been now for anywhere  from 2 4 years at Stage IV.  Even with the lymphedema he is glad that he did the radiation.  It was simple, only caused a mild burn which was easily taken care of with creams.  He did lost the whiskers on his left side of his face and underarm hair but it came back after a time. 

 

I think melanoma is a personal decision between each patients Dr. and himself/herself.  You cannot go by how others cancer comes back as each makeup is different.  Go with what you think is best for you and then forget about it as much as you can.  We know every day that his melanoma can come back but until it does we are going on about life as normal.    Oh yes, and the surgeon who did his SNB said that he thinks he must have not gotten the right node when it checked it out for it to come back in a year and a half so large in the axilla area.  We were amazed that he would admit that but he was a good surgeon and readily admitted his doubts of what he had done.  They are only human. 

 

If you have any questions you can email me at [email protected]

 

I don't post much but when I saw you questions I thought maybe this information could help you. 

 

Ann Gerst from Mediapolis, Iowa

I's  would like to let you know of my husband's experience with leukine and radiation.

He was first diagnosed with nodular melanoma in April, 2008.  It was 3.4 mm and Clark Stage IV so he was deemed Stage IIB after wide excision and SNB.  All was clear.  Took a watch and wait approach.  In Oct. 2009 dermatologist found a lump under his left arm (original melanoma was on left forearm).  He sent him to an oncologist in Iowa City, Iowa.  The lymph node was 5 cm and he had surgery to remove 32 nodes, with only the one with melanoma but it did show extranodal extension.  Oncologist and radiation Dr. said if he did not have radiation, because of the extra nodal extension he was 80 per cent sure of having a recurrance under his arm.  So, he had 5 high dose radiation treatments in two weeks and then he began leukine treatments which continued for one year.  I gave him the shots, other than red welts and some bone pain in his legs he really had no problems with it at all and continued life as normal.  He finished treatment in Nov. 2010.  In January, 2011 they thought he had melanoma in left shoulder blade but since it was so small they decided to just do monthly MRI's until it became large enough to biospy.  By May, 2011 it had showed no growth so they decided that it was not melanoma and he has no problems of any kind since.  He had a PET Scan in Sept. 2011 which was all clear.  During the time since the nodal recurrance PET Scans did show lung lesions and colon lesions but after testing all proved to be nothing, no more melanoma.  At this time he is considered NED and for him we feel the leukine was the best treatment.  I just read an article on Oncology Stats that said they have that interferon for Stage III is showing no effect at all so his oncologist did right by steering him away from that choice.  He said that Stage IIIB is a hard place to be as most clinical trials do not include  you at this point.

Anyway, yes, he does have lymphedema.  It occured about six months after his radiation but not real bad and would come and go.  Last January though it came back with a vengeance and his arm was huge.  He went for physical therapy and had arm wrapped and did this for about 4 months with limited success.  They recommended a pump for home use to keep fluid draining and it has worked very well.  He uses it twice a day while reading the paper or watching TV .  Most of the time the swelling stays down with this therapy and he has no problems.  His melanoma Dr. said for now he will only come back once every six months for a skin check but no more scans of any kind unless he has symptoms of something.  Not sure if this is proper for this stage but you have to trust someone. Oh yes, and while he has been having his melanoma battle he also developed a condition called LyP which is a benign skin lymphoma.  It is just an annoying skin rash which resolves on its own as mild as his has been.  Not a very common condition and his oncologist is not a bit concerned about it having any connection to the melanoma. 

 

So, at this stage of the disease we think he did the right treatment with Leukine.  We know of three others in our area who are Stage IV who used the leukine and yes, theirs did come back but was very treatable with surgery and are doing just fine and have been now for anywhere  from 2 4 years at Stage IV.  Even with the lymphedema he is glad that he did the radiation.  It was simple, only caused a mild burn which was easily taken care of with creams.  He did lost the whiskers on his left side of his face and underarm hair but it came back after a time. 

 

I think melanoma is a personal decision between each patients Dr. and himself/herself.  You cannot go by how others cancer comes back as each makeup is different.  Go with what you think is best for you and then forget about it as much as you can.  We know every day that his melanoma can come back but until it does we are going on about life as normal.    Oh yes, and the surgeon who did his SNB said that he thinks he must have not gotten the right node when it checked it out for it to come back in a year and a half so large in the axilla area.  We were amazed that he would admit that but he was a good surgeon and readily admitted his doubts of what he had done.  They are only human. 

 

If you have any questions you can email me at [email protected]

 

I don't post much but when I saw you questions I thought maybe this information could help you. 

 

Ann Gerst from Mediapolis, Iowa

My husband, stage IIIc, just finished his first around of leukine. We had the option to choose interferon vs ipi trial but then got a second opinion from Mayo. it was interesting to hear the physician say that for 10 years he has not been using interferon because the studies have not shown it to extend lifespan and the side effects can be pretty difficult. We chose leukined because it would allow my husband to have a good quality of life with minimal side effects and because studies have shown that should a new lesion occur many a times it is localized to one location that can be surgically excised. Good luck…you just have to be confident in the decision you make and have no regrets.

My husband, stage IIIc, just finished his first around of leukine. We had the option to choose interferon vs ipi trial but then got a second opinion from Mayo. it was interesting to hear the physician say that for 10 years he has not been using interferon because the studies have not shown it to extend lifespan and the side effects can be pretty difficult. We chose leukined because it would allow my husband to have a good quality of life with minimal side effects and because studies have shown that should a new lesion occur many a times it is localized to one location that can be surgically excised. Good luck…you just have to be confident in the decision you make and have no regrets.

My husband, stage IIIc, just finished his first around of leukine. We had the option to choose interferon vs ipi trial but then got a second opinion from Mayo. it was interesting to hear the physician say that for 10 years he has not been using interferon because the studies have not shown it to extend lifespan and the side effects can be pretty difficult. We chose leukined because it would allow my husband to have a good quality of life with minimal side effects and because studies have shown that should a new lesion occur many a times it is localized to one location that can be surgically excised. Good luck…you just have to be confident in the decision you make and have no regrets.