@ann-from-iowa
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- August 4, 2013 at 4:13 pm
My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB. 18 months later recurred with a 5 cm lymph node with extranodal extension, not a pretty picture. Had high dose radiation to axilla and LND. Does have lymphedema. Also received 1 year treatment with Leukine shots. Now 3 1/2 years later after end of treatment he is just fine. Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans. There is alot of hope and success with different treatments. It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment. In time you worry less but it never leaves your thoughts. But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that could still be in his body. Good luck to you as you wage this battle. You have many friends on this support site and I know it was invaluable to us as we started down this road. Many people go on living well after this dire of a diagnosis. But it is frightening. No doubt.
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- August 4, 2013 at 4:13 pm
My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB. 18 months later recurred with a 5 cm lymph node with extranodal extension, not a pretty picture. Had high dose radiation to axilla and LND. Does have lymphedema. Also received 1 year treatment with Leukine shots. Now 3 1/2 years later after end of treatment he is just fine. Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans. There is alot of hope and success with different treatments. It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment. In time you worry less but it never leaves your thoughts. But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that could still be in his body. Good luck to you as you wage this battle. You have many friends on this support site and I know it was invaluable to us as we started down this road. Many people go on living well after this dire of a diagnosis. But it is frightening. No doubt.
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- August 4, 2013 at 4:13 pm
My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB. 18 months later recurred with a 5 cm lymph node with extranodal extension, not a pretty picture. Had high dose radiation to axilla and LND. Does have lymphedema. Also received 1 year treatment with Leukine shots. Now 3 1/2 years later after end of treatment he is just fine. Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans. There is alot of hope and success with different treatments. It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment. In time you worry less but it never leaves your thoughts. But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that could still be in his body. Good luck to you as you wage this battle. You have many friends on this support site and I know it was invaluable to us as we started down this road. Many people go on living well after this dire of a diagnosis. But it is frightening. No doubt.
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- May 7, 2013 at 12:42 am
Yes, my husband has a form of skin lymphoma which was diagnosed after his surgery to remove 32 lymph nodes when one was 5 cm with extranodal extension. His is called lymphomatoid papulosis and is a benign lymphoma but can become a malignant melanoma. He breaks out in a type of rash that itches intensely. You can read his profile under my" Ann from Iowa" listing. You also can read about his type of skin lymphoma on the Cutaneous Skin Lymphoma site. It is a very rare form of benign lymphoma and they tell you of the other forms on this site too which probably will tell you about what you have. I believe his is a T-Cell lymphoma too. Other than being a real bother it has not been that much of a problem. His dermatologist gave him a steroid cream to put on the rash to help with the itching. He has only had 3 outbreaks since it was diagnosed but I know each time it has been a bit worse. Some people have it all of the time. I am not sure what name they put on yours but hopefully it will be no worse than his. He is Stage IIIB and has been NED for 2 1/2 years since radiation and 1 year Leukine treatment. Good luck with this additional problem.
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- May 7, 2013 at 12:42 am
Yes, my husband has a form of skin lymphoma which was diagnosed after his surgery to remove 32 lymph nodes when one was 5 cm with extranodal extension. His is called lymphomatoid papulosis and is a benign lymphoma but can become a malignant melanoma. He breaks out in a type of rash that itches intensely. You can read his profile under my" Ann from Iowa" listing. You also can read about his type of skin lymphoma on the Cutaneous Skin Lymphoma site. It is a very rare form of benign lymphoma and they tell you of the other forms on this site too which probably will tell you about what you have. I believe his is a T-Cell lymphoma too. Other than being a real bother it has not been that much of a problem. His dermatologist gave him a steroid cream to put on the rash to help with the itching. He has only had 3 outbreaks since it was diagnosed but I know each time it has been a bit worse. Some people have it all of the time. I am not sure what name they put on yours but hopefully it will be no worse than his. He is Stage IIIB and has been NED for 2 1/2 years since radiation and 1 year Leukine treatment. Good luck with this additional problem.
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- May 7, 2013 at 12:42 am
Yes, my husband has a form of skin lymphoma which was diagnosed after his surgery to remove 32 lymph nodes when one was 5 cm with extranodal extension. His is called lymphomatoid papulosis and is a benign lymphoma but can become a malignant melanoma. He breaks out in a type of rash that itches intensely. You can read his profile under my" Ann from Iowa" listing. You also can read about his type of skin lymphoma on the Cutaneous Skin Lymphoma site. It is a very rare form of benign lymphoma and they tell you of the other forms on this site too which probably will tell you about what you have. I believe his is a T-Cell lymphoma too. Other than being a real bother it has not been that much of a problem. His dermatologist gave him a steroid cream to put on the rash to help with the itching. He has only had 3 outbreaks since it was diagnosed but I know each time it has been a bit worse. Some people have it all of the time. I am not sure what name they put on yours but hopefully it will be no worse than his. He is Stage IIIB and has been NED for 2 1/2 years since radiation and 1 year Leukine treatment. Good luck with this additional problem.
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- March 19, 2013 at 4:49 pm
I just wanted to update you on my appointment this morning with my husband's local dermatologist. I related to him how his appointment went on Friday and as a very professional man, he only said " This Dr. must have been having a very bad day". But he did say that no, you don't ditch a patient because of a bad habit. You try to help them through it.
Anyway, he is going to have him come in in three months for a skin check and we will go from there. He said tht IF his melanoma should ever return he will make sure he sees the local oncologist and then he can refer us somewhere else if need be which would more than likely at this point be the Mayo Clinic in Rochester. This dermatologist is the one who initially diagnosed his nodular melanoma in 2008 and 18 months later found it in his lymph node under his arm.
I just wanted to thank everyone who replied to my post and supported me in making the decision to change doctors. I do think the way he went about all of this to get him to quit using tobacco was a bit harsh. It was refreshing today to be spoken to so kindly and given the word that they would try and help him quit his tobacco habit. And now it will be up to my husband to take that help. I hope he does. Again, a sincere thank you to all of you and best of luck to you also in this fight against melanoma.
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- March 19, 2013 at 4:49 pm
I just wanted to update you on my appointment this morning with my husband's local dermatologist. I related to him how his appointment went on Friday and as a very professional man, he only said " This Dr. must have been having a very bad day". But he did say that no, you don't ditch a patient because of a bad habit. You try to help them through it.
Anyway, he is going to have him come in in three months for a skin check and we will go from there. He said tht IF his melanoma should ever return he will make sure he sees the local oncologist and then he can refer us somewhere else if need be which would more than likely at this point be the Mayo Clinic in Rochester. This dermatologist is the one who initially diagnosed his nodular melanoma in 2008 and 18 months later found it in his lymph node under his arm.
I just wanted to thank everyone who replied to my post and supported me in making the decision to change doctors. I do think the way he went about all of this to get him to quit using tobacco was a bit harsh. It was refreshing today to be spoken to so kindly and given the word that they would try and help him quit his tobacco habit. And now it will be up to my husband to take that help. I hope he does. Again, a sincere thank you to all of you and best of luck to you also in this fight against melanoma.
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- March 19, 2013 at 4:49 pm
I just wanted to update you on my appointment this morning with my husband's local dermatologist. I related to him how his appointment went on Friday and as a very professional man, he only said " This Dr. must have been having a very bad day". But he did say that no, you don't ditch a patient because of a bad habit. You try to help them through it.
Anyway, he is going to have him come in in three months for a skin check and we will go from there. He said tht IF his melanoma should ever return he will make sure he sees the local oncologist and then he can refer us somewhere else if need be which would more than likely at this point be the Mayo Clinic in Rochester. This dermatologist is the one who initially diagnosed his nodular melanoma in 2008 and 18 months later found it in his lymph node under his arm.
I just wanted to thank everyone who replied to my post and supported me in making the decision to change doctors. I do think the way he went about all of this to get him to quit using tobacco was a bit harsh. It was refreshing today to be spoken to so kindly and given the word that they would try and help him quit his tobacco habit. And now it will be up to my husband to take that help. I hope he does. Again, a sincere thank you to all of you and best of luck to you also in this fight against melanoma.
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- December 20, 2014 at 12:18 am
I so appreciate your comments about your experience with CT and surgery on an arm with lymphedema. Yes, he did have a CLND under his left arm. He had a very bad infection in that arm this fall just from getting a small scratch from a tree limb he was triming. He was very sick and had to take two pretty high powered antiobiotics to get over it. The surgeon did not even mention any physical therapy for it. He said it was very severe and not ony must have both wrists done but also the elbows as he has the other pinched nerve issue. It sounds like your CT was about like his. I am going to show your note to Dennis and am going to look into the physical therapy for that arm. I think the other arm will be fine but something really worries me about the other arm and I don't think this is worth the risk. When they don't even want him so much as having a blood pressure cuff on that arm then why would you even consider surgery especially when it is elective and not anything life threatening that must be done if another route could help. Again, thanks so much. And he is Stage IIIB and the node that burst under his arm was 5 cm so very large. Scares us as his oncologist said when it burst it sent melanoma cells everywhere. So yes, this surgery is concerning.
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- December 20, 2014 at 12:18 am
I so appreciate your comments about your experience with CT and surgery on an arm with lymphedema. Yes, he did have a CLND under his left arm. He had a very bad infection in that arm this fall just from getting a small scratch from a tree limb he was triming. He was very sick and had to take two pretty high powered antiobiotics to get over it. The surgeon did not even mention any physical therapy for it. He said it was very severe and not ony must have both wrists done but also the elbows as he has the other pinched nerve issue. It sounds like your CT was about like his. I am going to show your note to Dennis and am going to look into the physical therapy for that arm. I think the other arm will be fine but something really worries me about the other arm and I don't think this is worth the risk. When they don't even want him so much as having a blood pressure cuff on that arm then why would you even consider surgery especially when it is elective and not anything life threatening that must be done if another route could help. Again, thanks so much. And he is Stage IIIB and the node that burst under his arm was 5 cm so very large. Scares us as his oncologist said when it burst it sent melanoma cells everywhere. So yes, this surgery is concerning.
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- December 20, 2014 at 12:18 am
I so appreciate your comments about your experience with CT and surgery on an arm with lymphedema. Yes, he did have a CLND under his left arm. He had a very bad infection in that arm this fall just from getting a small scratch from a tree limb he was triming. He was very sick and had to take two pretty high powered antiobiotics to get over it. The surgeon did not even mention any physical therapy for it. He said it was very severe and not ony must have both wrists done but also the elbows as he has the other pinched nerve issue. It sounds like your CT was about like his. I am going to show your note to Dennis and am going to look into the physical therapy for that arm. I think the other arm will be fine but something really worries me about the other arm and I don't think this is worth the risk. When they don't even want him so much as having a blood pressure cuff on that arm then why would you even consider surgery especially when it is elective and not anything life threatening that must be done if another route could help. Again, thanks so much. And he is Stage IIIB and the node that burst under his arm was 5 cm so very large. Scares us as his oncologist said when it burst it sent melanoma cells everywhere. So yes, this surgery is concerning.
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- March 17, 2013 at 10:59 pm
How interesting. Just jokingly, I have wanted to ask when I read all the statistics about melanoma or any cancer for that matter, if anyone had ever done a survey on whose melanoma or cancer returns, those who do everything on the straight and narrow path and those such as my husband has,continues to smoke, chew tobacco and eat a poor diet or makes other poor choices. Seriously though, each persons bodies are different and each responds to the treatments in other ways. Don't get me wrong, I would give anything for him to quit and enjoy life without these habits but it is not for me to say. I learned that a long time ago and as others have said, nagging only would make the situation worse. And my thoughts were as yours, when his struggles both physically and mentally with his melanoma diagnosis were at its worst, that his stress level as well as mine were off the charts. For now he has been blessed with NED and we hope that will continue. With the responses we have gotten I am going to stop by the dermatologists office before work in the morning and make an appointment to talk to him. We can only go from there. This situation cannot continue as I can not handle it. Thanks for the kind support.
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- March 17, 2013 at 10:59 pm
How interesting. Just jokingly, I have wanted to ask when I read all the statistics about melanoma or any cancer for that matter, if anyone had ever done a survey on whose melanoma or cancer returns, those who do everything on the straight and narrow path and those such as my husband has,continues to smoke, chew tobacco and eat a poor diet or makes other poor choices. Seriously though, each persons bodies are different and each responds to the treatments in other ways. Don't get me wrong, I would give anything for him to quit and enjoy life without these habits but it is not for me to say. I learned that a long time ago and as others have said, nagging only would make the situation worse. And my thoughts were as yours, when his struggles both physically and mentally with his melanoma diagnosis were at its worst, that his stress level as well as mine were off the charts. For now he has been blessed with NED and we hope that will continue. With the responses we have gotten I am going to stop by the dermatologists office before work in the morning and make an appointment to talk to him. We can only go from there. This situation cannot continue as I can not handle it. Thanks for the kind support.
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- March 17, 2013 at 10:59 pm
How interesting. Just jokingly, I have wanted to ask when I read all the statistics about melanoma or any cancer for that matter, if anyone had ever done a survey on whose melanoma or cancer returns, those who do everything on the straight and narrow path and those such as my husband has,continues to smoke, chew tobacco and eat a poor diet or makes other poor choices. Seriously though, each persons bodies are different and each responds to the treatments in other ways. Don't get me wrong, I would give anything for him to quit and enjoy life without these habits but it is not for me to say. I learned that a long time ago and as others have said, nagging only would make the situation worse. And my thoughts were as yours, when his struggles both physically and mentally with his melanoma diagnosis were at its worst, that his stress level as well as mine were off the charts. For now he has been blessed with NED and we hope that will continue. With the responses we have gotten I am going to stop by the dermatologists office before work in the morning and make an appointment to talk to him. We can only go from there. This situation cannot continue as I can not handle it. Thanks for the kind support.
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