› Forums › General Melanoma Community › Friend just diagnosed Stage IV, is there hope?
- This topic has 54 replies, 14 voices, and was last updated 11 years, 8 months ago by JerryfromFauq.
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- February 13, 2012 at 1:59 am
A high school classmate of mine was just diagnosed with stage IV melanoma after having a fairly shallow melanoma removed almost 5 yrs ago with negative SNB. He had GI issues and tests were run that showed the melanoma is in liver, lung and adrenal glands. He chose hospice and no treatment. Is there not a treatment or hope for him? I know it is his choice, but if there is any chance?? He is young (30s) and has children and a wife.
A high school classmate of mine was just diagnosed with stage IV melanoma after having a fairly shallow melanoma removed almost 5 yrs ago with negative SNB. He had GI issues and tests were run that showed the melanoma is in liver, lung and adrenal glands. He chose hospice and no treatment. Is there not a treatment or hope for him? I know it is his choice, but if there is any chance?? He is young (30s) and has children and a wife.
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- February 13, 2012 at 2:07 am
Hi, has he had treatment of any kind? Has he seen a melanoma specialist? There are several treatments out there that could possibly help him. A melanoma specialist is key. Where does he live? There is a ot of help to be had on this board, I am glad you posted. Melissa
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- February 13, 2012 at 2:07 am
Hi, has he had treatment of any kind? Has he seen a melanoma specialist? There are several treatments out there that could possibly help him. A melanoma specialist is key. Where does he live? There is a ot of help to be had on this board, I am glad you posted. Melissa
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- February 13, 2012 at 2:07 am
Hi, has he had treatment of any kind? Has he seen a melanoma specialist? There are several treatments out there that could possibly help him. A melanoma specialist is key. Where does he live? There is a ot of help to be had on this board, I am glad you posted. Melissa
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- February 13, 2012 at 2:24 am
Are you saying he hasn't even looked into any treatments?
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- February 13, 2012 at 2:00 pm
Yes, I'm saying that he is making the choice of hospice. As a couple, they have decided this is best for them, but I've seen so many people on this site who have come back, even with advanced spread. He is choosing pallitive care and the dr's are giving him months to live.
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- February 13, 2012 at 2:00 pm
Yes, I'm saying that he is making the choice of hospice. As a couple, they have decided this is best for them, but I've seen so many people on this site who have come back, even with advanced spread. He is choosing pallitive care and the dr's are giving him months to live.
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- February 13, 2012 at 2:00 pm
Yes, I'm saying that he is making the choice of hospice. As a couple, they have decided this is best for them, but I've seen so many people on this site who have come back, even with advanced spread. He is choosing pallitive care and the dr's are giving him months to live.
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- February 13, 2012 at 3:00 am
There are a number of stage IV folks here who have been around for years, so yes, there IS HOPE!
Over the past year the FDA approved two new drugs for treatment of melanoma: Yervoy and Zelboraf. Many folks are doing well on these drugs. There also are clinical trials he may qualify for.
It sounds like he's thrown in the towel and there's no reason for that. Not at all.
If he's not seeing a melanoma specialist, then he needs to find one and get the full lowdown on treatment options.
Linda
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- February 13, 2012 at 3:00 am
There are a number of stage IV folks here who have been around for years, so yes, there IS HOPE!
Over the past year the FDA approved two new drugs for treatment of melanoma: Yervoy and Zelboraf. Many folks are doing well on these drugs. There also are clinical trials he may qualify for.
It sounds like he's thrown in the towel and there's no reason for that. Not at all.
If he's not seeing a melanoma specialist, then he needs to find one and get the full lowdown on treatment options.
Linda
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- February 13, 2012 at 3:00 am
There are a number of stage IV folks here who have been around for years, so yes, there IS HOPE!
Over the past year the FDA approved two new drugs for treatment of melanoma: Yervoy and Zelboraf. Many folks are doing well on these drugs. There also are clinical trials he may qualify for.
It sounds like he's thrown in the towel and there's no reason for that. Not at all.
If he's not seeing a melanoma specialist, then he needs to find one and get the full lowdown on treatment options.
Linda
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- February 13, 2012 at 3:03 am
I know he must be scared silly.Tell him that there is a good chance he can beat it.The odds are not in his favor but without a fight he will definely loose.The idea many of us with this beast is to fight to stay alive till the right treatment is discovered.Remember the AIDS desease was a death sentence but now it no longer is.Just look at Magic Johnson who seems to be pretty much alive and thriving.Tell him to fight at least for his familys sake.There are many here that will offer support to him.God Bless.Keep us posted
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- February 13, 2012 at 3:03 am
I know he must be scared silly.Tell him that there is a good chance he can beat it.The odds are not in his favor but without a fight he will definely loose.The idea many of us with this beast is to fight to stay alive till the right treatment is discovered.Remember the AIDS desease was a death sentence but now it no longer is.Just look at Magic Johnson who seems to be pretty much alive and thriving.Tell him to fight at least for his familys sake.There are many here that will offer support to him.God Bless.Keep us posted
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- February 13, 2012 at 3:03 am
I know he must be scared silly.Tell him that there is a good chance he can beat it.The odds are not in his favor but without a fight he will definely loose.The idea many of us with this beast is to fight to stay alive till the right treatment is discovered.Remember the AIDS desease was a death sentence but now it no longer is.Just look at Magic Johnson who seems to be pretty much alive and thriving.Tell him to fight at least for his familys sake.There are many here that will offer support to him.God Bless.Keep us posted
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- February 13, 2012 at 7:58 am
I am stage 4 and I have been NED (No Evidence of Disease ) for 2 years…he needs to fight and at least try a few clinical trials using Yervoy,MDX 1106 ( anti pd-1) or B-raf . First thing is he needs a melanoma specialist, not a regular oncologist…Lynn
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- February 13, 2012 at 7:58 am
I am stage 4 and I have been NED (No Evidence of Disease ) for 2 years…he needs to fight and at least try a few clinical trials using Yervoy,MDX 1106 ( anti pd-1) or B-raf . First thing is he needs a melanoma specialist, not a regular oncologist…Lynn
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- February 13, 2012 at 7:58 am
I am stage 4 and I have been NED (No Evidence of Disease ) for 2 years…he needs to fight and at least try a few clinical trials using Yervoy,MDX 1106 ( anti pd-1) or B-raf . First thing is he needs a melanoma specialist, not a regular oncologist…Lynn
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- February 13, 2012 at 8:04 am
PS I saw you had lentigo maligna…so did I . It is considered slow growing and that is why mine ( which was first found/removed in 92- it came back in 96 and had it removed again ( always clean lymph nodes) in 2000…it came back again in 2009 by my heart and was over 6.8 cent at its widest area…I have been NED since March 26,2010. ( nearing 2 years!
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- February 13, 2012 at 5:16 pm
Hi there,
Yes, I did have a lentigo maligna (melanoma in situ) removed in 2008. I got a couple reads on my pathology and it was a very low risk lesion and confirmed in situ so I don't worry about it spreading, although I do keep an eye on scar for recurrence and have had it biopsied once. I read your patnet. I am sorry your melanoma is now stage IV. Cancer sucks! Stay strong!
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- February 13, 2012 at 5:16 pm
Hi there,
Yes, I did have a lentigo maligna (melanoma in situ) removed in 2008. I got a couple reads on my pathology and it was a very low risk lesion and confirmed in situ so I don't worry about it spreading, although I do keep an eye on scar for recurrence and have had it biopsied once. I read your patnet. I am sorry your melanoma is now stage IV. Cancer sucks! Stay strong!
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- February 13, 2012 at 5:16 pm
Hi there,
Yes, I did have a lentigo maligna (melanoma in situ) removed in 2008. I got a couple reads on my pathology and it was a very low risk lesion and confirmed in situ so I don't worry about it spreading, although I do keep an eye on scar for recurrence and have had it biopsied once. I read your patnet. I am sorry your melanoma is now stage IV. Cancer sucks! Stay strong!
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- February 13, 2012 at 8:04 am
PS I saw you had lentigo maligna…so did I . It is considered slow growing and that is why mine ( which was first found/removed in 92- it came back in 96 and had it removed again ( always clean lymph nodes) in 2000…it came back again in 2009 by my heart and was over 6.8 cent at its widest area…I have been NED since March 26,2010. ( nearing 2 years!
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- February 13, 2012 at 8:04 am
PS I saw you had lentigo maligna…so did I . It is considered slow growing and that is why mine ( which was first found/removed in 92- it came back in 96 and had it removed again ( always clean lymph nodes) in 2000…it came back again in 2009 by my heart and was over 6.8 cent at its widest area…I have been NED since March 26,2010. ( nearing 2 years!
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- February 13, 2012 at 3:41 pm
I have been stage IV / NED (no evidence of disease) for FOUR years . I only had metastasis to my lung, but I did a chemo pill called Temodar (temozolamide) for 11 months. It had minimal side effects- didn't loose my hair, nausea was controlled well with other drugs. A little hope can go a long way sometimes. There are those who have had a full and durable response to a treatment. Best of luck to your friend.
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- February 13, 2012 at 3:41 pm
I have been stage IV / NED (no evidence of disease) for FOUR years . I only had metastasis to my lung, but I did a chemo pill called Temodar (temozolamide) for 11 months. It had minimal side effects- didn't loose my hair, nausea was controlled well with other drugs. A little hope can go a long way sometimes. There are those who have had a full and durable response to a treatment. Best of luck to your friend.
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- February 13, 2012 at 3:41 pm
I have been stage IV / NED (no evidence of disease) for FOUR years . I only had metastasis to my lung, but I did a chemo pill called Temodar (temozolamide) for 11 months. It had minimal side effects- didn't loose my hair, nausea was controlled well with other drugs. A little hope can go a long way sometimes. There are those who have had a full and durable response to a treatment. Best of luck to your friend.
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- February 13, 2012 at 3:44 pm
My husband was given 6-9 months in January 2011 wit tumors in lymph nodes, lungs, GI tract, and brain. Thanks to 4 surgeries, Yervoy and Zelboraf, he is still here and feeling fairly good. He still has tumors, but we are squeezing in as much as we can with our young boys. Definitely don’t give up! Since diagnosis, he’s been zip lining in Belize, took our kids to DisneyWorld, and celebrated a years worth of holidays we didn’t think we’d have. Find a melanoma specialist and fight! There are several treatments…none are curative, but they can definitely buy more time. -
- February 13, 2012 at 3:44 pm
My husband was given 6-9 months in January 2011 wit tumors in lymph nodes, lungs, GI tract, and brain. Thanks to 4 surgeries, Yervoy and Zelboraf, he is still here and feeling fairly good. He still has tumors, but we are squeezing in as much as we can with our young boys. Definitely don’t give up! Since diagnosis, he’s been zip lining in Belize, took our kids to DisneyWorld, and celebrated a years worth of holidays we didn’t think we’d have. Find a melanoma specialist and fight! There are several treatments…none are curative, but they can definitely buy more time. -
- February 13, 2012 at 3:44 pm
My husband was given 6-9 months in January 2011 wit tumors in lymph nodes, lungs, GI tract, and brain. Thanks to 4 surgeries, Yervoy and Zelboraf, he is still here and feeling fairly good. He still has tumors, but we are squeezing in as much as we can with our young boys. Definitely don’t give up! Since diagnosis, he’s been zip lining in Belize, took our kids to DisneyWorld, and celebrated a years worth of holidays we didn’t think we’d have. Find a melanoma specialist and fight! There are several treatments…none are curative, but they can definitely buy more time. -
- February 13, 2012 at 4:14 pm
Hello,
My husband was diagnosed with his first melanoma in Jan. 2008 and his first SNB came back negative. He has had 4 surgeries and was NED for 6 to 9 months between each.
Oct. 2010 we found out he had another spot on his head and it was pressing on the spine, which made it inoperable. Upon scans found out he had it in his liver and lungs as well. In March 2011 he went into a clinical trial for Ipi (Yervoy). The one on his head is totally gone and the lungs as well. He still has some in his liver but considering it was 5 x 6 and now under 2 x 2 we consider things are going well. If my husband had not been put into this clinical trial or tried something who knows if he would still be here.
Please tell him to see a melanoma specialist as there are many things that can help extend life and maybe even make him NED (no evidence of disease). He should not give up on life so easily and try to extend it to get as much as possible out of life with his wife and kids.
Best of luck to you friend and I will pray he finds some help.
Judy (loving wife and caregiver to Gene Stage IV)
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- February 13, 2012 at 4:14 pm
Hello,
My husband was diagnosed with his first melanoma in Jan. 2008 and his first SNB came back negative. He has had 4 surgeries and was NED for 6 to 9 months between each.
Oct. 2010 we found out he had another spot on his head and it was pressing on the spine, which made it inoperable. Upon scans found out he had it in his liver and lungs as well. In March 2011 he went into a clinical trial for Ipi (Yervoy). The one on his head is totally gone and the lungs as well. He still has some in his liver but considering it was 5 x 6 and now under 2 x 2 we consider things are going well. If my husband had not been put into this clinical trial or tried something who knows if he would still be here.
Please tell him to see a melanoma specialist as there are many things that can help extend life and maybe even make him NED (no evidence of disease). He should not give up on life so easily and try to extend it to get as much as possible out of life with his wife and kids.
Best of luck to you friend and I will pray he finds some help.
Judy (loving wife and caregiver to Gene Stage IV)
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- February 13, 2012 at 4:14 pm
Hello,
My husband was diagnosed with his first melanoma in Jan. 2008 and his first SNB came back negative. He has had 4 surgeries and was NED for 6 to 9 months between each.
Oct. 2010 we found out he had another spot on his head and it was pressing on the spine, which made it inoperable. Upon scans found out he had it in his liver and lungs as well. In March 2011 he went into a clinical trial for Ipi (Yervoy). The one on his head is totally gone and the lungs as well. He still has some in his liver but considering it was 5 x 6 and now under 2 x 2 we consider things are going well. If my husband had not been put into this clinical trial or tried something who knows if he would still be here.
Please tell him to see a melanoma specialist as there are many things that can help extend life and maybe even make him NED (no evidence of disease). He should not give up on life so easily and try to extend it to get as much as possible out of life with his wife and kids.
Best of luck to you friend and I will pray he finds some help.
Judy (loving wife and caregiver to Gene Stage IV)
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- February 13, 2012 at 4:56 pm
I agree with what has already been stated. FIGHT! I have been NED four nearly four years (in June) after having found to have met to the bone (sacrum). There has been tremendous progress on fighting melanoma over the last few years. I strongly suggest that they seek out a melanoma specialist. Only when they have an informed decision, should they make one that almost certainly means death. Personally, I would go as far as to TRY some of the treatments that would be suggested by a melanoma specialist before "giving up". A response to treatment would give more hope, where as , failure to respond to any treatment could then be used to justify there original decision. I pray that they will be swayed by the arguments here and at LEAST see a melanoma specialist first.
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- February 13, 2012 at 4:56 pm
I agree with what has already been stated. FIGHT! I have been NED four nearly four years (in June) after having found to have met to the bone (sacrum). There has been tremendous progress on fighting melanoma over the last few years. I strongly suggest that they seek out a melanoma specialist. Only when they have an informed decision, should they make one that almost certainly means death. Personally, I would go as far as to TRY some of the treatments that would be suggested by a melanoma specialist before "giving up". A response to treatment would give more hope, where as , failure to respond to any treatment could then be used to justify there original decision. I pray that they will be swayed by the arguments here and at LEAST see a melanoma specialist first.
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- February 13, 2012 at 4:56 pm
I agree with what has already been stated. FIGHT! I have been NED four nearly four years (in June) after having found to have met to the bone (sacrum). There has been tremendous progress on fighting melanoma over the last few years. I strongly suggest that they seek out a melanoma specialist. Only when they have an informed decision, should they make one that almost certainly means death. Personally, I would go as far as to TRY some of the treatments that would be suggested by a melanoma specialist before "giving up". A response to treatment would give more hope, where as , failure to respond to any treatment could then be used to justify there original decision. I pray that they will be swayed by the arguments here and at LEAST see a melanoma specialist first.
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- February 13, 2012 at 5:23 pm
Is it insurance or money? I do not know how he is feeling but from a caregiver for a stage 4 warrior I would encourage your friend to fight so he can show his children how to never give up! Celebrate one more birthday, anniversary, holiday even another weekend! Around this time last year my husband started having bad headaches that led to the stage 4 diagnoses brain, bone, and lung. Has had recent radiation for a spinal tumor and is fighting leptomeningeal. We are in Houston now for scans to see if the treatment for the leptomeningeal is helping. It may be selfish of me but I am glad he is fighting for us and our family. I pray your friends will change their minds and put up a fight.
Samantha
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- February 13, 2012 at 5:23 pm
Is it insurance or money? I do not know how he is feeling but from a caregiver for a stage 4 warrior I would encourage your friend to fight so he can show his children how to never give up! Celebrate one more birthday, anniversary, holiday even another weekend! Around this time last year my husband started having bad headaches that led to the stage 4 diagnoses brain, bone, and lung. Has had recent radiation for a spinal tumor and is fighting leptomeningeal. We are in Houston now for scans to see if the treatment for the leptomeningeal is helping. It may be selfish of me but I am glad he is fighting for us and our family. I pray your friends will change their minds and put up a fight.
Samantha
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- February 13, 2012 at 5:23 pm
Is it insurance or money? I do not know how he is feeling but from a caregiver for a stage 4 warrior I would encourage your friend to fight so he can show his children how to never give up! Celebrate one more birthday, anniversary, holiday even another weekend! Around this time last year my husband started having bad headaches that led to the stage 4 diagnoses brain, bone, and lung. Has had recent radiation for a spinal tumor and is fighting leptomeningeal. We are in Houston now for scans to see if the treatment for the leptomeningeal is helping. It may be selfish of me but I am glad he is fighting for us and our family. I pray your friends will change their minds and put up a fight.
Samantha
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- February 13, 2012 at 6:41 pm
Hi Samantha. i was intrigued by your response to "Friend" in that i have a case very similar to your husband's. I was diagnosed stage 3C in 2009 with a primary on my forehead and metastasis to my parotid gland and 2 neck lymph nodes. After surgery, radiation and Interferon I was NED for 20 months. I'm now stage 4; bone (knee), lung and leptominingeal. (left lobe of brain) I'm waiting for my radiation onc to call me with an appointment, for Gamma Knife on the brain. No talk yet of ommaya. You and your husband are in my thoughts. Please keep us informed of his progress through the IL2.
frankd brooklyn
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- February 13, 2012 at 6:41 pm
Hi Samantha. i was intrigued by your response to "Friend" in that i have a case very similar to your husband's. I was diagnosed stage 3C in 2009 with a primary on my forehead and metastasis to my parotid gland and 2 neck lymph nodes. After surgery, radiation and Interferon I was NED for 20 months. I'm now stage 4; bone (knee), lung and leptominingeal. (left lobe of brain) I'm waiting for my radiation onc to call me with an appointment, for Gamma Knife on the brain. No talk yet of ommaya. You and your husband are in my thoughts. Please keep us informed of his progress through the IL2.
frankd brooklyn
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- February 13, 2012 at 6:41 pm
Hi Samantha. i was intrigued by your response to "Friend" in that i have a case very similar to your husband's. I was diagnosed stage 3C in 2009 with a primary on my forehead and metastasis to my parotid gland and 2 neck lymph nodes. After surgery, radiation and Interferon I was NED for 20 months. I'm now stage 4; bone (knee), lung and leptominingeal. (left lobe of brain) I'm waiting for my radiation onc to call me with an appointment, for Gamma Knife on the brain. No talk yet of ommaya. You and your husband are in my thoughts. Please keep us informed of his progress through the IL2.
frankd brooklyn
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- February 14, 2012 at 10:15 pm
I almost gave up too. I felt like suicide after my dx in June, 2009 with advanced Stage IV, and a Doctor who told me I had 3 months to live. Here I am, almost 3 years later!! Tell him not to give up. There is always hope. Clinical trials, for one thing. Go to Angeles Clinic, or National Institute of Health.
God Bless
Terri
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- February 14, 2012 at 10:15 pm
I almost gave up too. I felt like suicide after my dx in June, 2009 with advanced Stage IV, and a Doctor who told me I had 3 months to live. Here I am, almost 3 years later!! Tell him not to give up. There is always hope. Clinical trials, for one thing. Go to Angeles Clinic, or National Institute of Health.
God Bless
Terri
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- February 14, 2012 at 10:15 pm
I almost gave up too. I felt like suicide after my dx in June, 2009 with advanced Stage IV, and a Doctor who told me I had 3 months to live. Here I am, almost 3 years later!! Tell him not to give up. There is always hope. Clinical trials, for one thing. Go to Angeles Clinic, or National Institute of Health.
God Bless
Terri
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- July 8, 2012 at 10:01 pm
I thought I'd update this post. He lost his battle approx a month ago, it was very difficult in the end but they kept a positive attitude. The day before his memorial her son was dx with a tumor in his chest that they suspected was malignant. He is 17. Thankfully, it was a teratoma. She has a blog that is quite uplifting.
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- July 8, 2012 at 10:01 pm
I thought I'd update this post. He lost his battle approx a month ago, it was very difficult in the end but they kept a positive attitude. The day before his memorial her son was dx with a tumor in his chest that they suspected was malignant. He is 17. Thankfully, it was a teratoma. She has a blog that is quite uplifting.
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- July 8, 2012 at 10:01 pm
I thought I'd update this post. He lost his battle approx a month ago, it was very difficult in the end but they kept a positive attitude. The day before his memorial her son was dx with a tumor in his chest that they suspected was malignant. He is 17. Thankfully, it was a teratoma. She has a blog that is quite uplifting.
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- July 9, 2012 at 3:28 am
Thank you for your post. Yes, it was his decision. This also shows oihers what is quite sure to happen if one does not fight. We have others have fought and went as fast. We also have some that have had active stage 4 disease for as long as16 years that are fighting on. We also know some that were given, at stage 4, months to live over 20 years ago and and have almost forgotten that they ever had melanoma.
No guaratee if one fights, BUT, AT STAGE 4, pretty much one as to what happens if one doesn't.
Glad to hear the son's was not malinant.
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- July 9, 2012 at 3:28 am
Thank you for your post. Yes, it was his decision. This also shows oihers what is quite sure to happen if one does not fight. We have others have fought and went as fast. We also have some that have had active stage 4 disease for as long as16 years that are fighting on. We also know some that were given, at stage 4, months to live over 20 years ago and and have almost forgotten that they ever had melanoma.
No guaratee if one fights, BUT, AT STAGE 4, pretty much one as to what happens if one doesn't.
Glad to hear the son's was not malinant.
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- July 9, 2012 at 3:28 am
Thank you for your post. Yes, it was his decision. This also shows oihers what is quite sure to happen if one does not fight. We have others have fought and went as fast. We also have some that have had active stage 4 disease for as long as16 years that are fighting on. We also know some that were given, at stage 4, months to live over 20 years ago and and have almost forgotten that they ever had melanoma.
No guaratee if one fights, BUT, AT STAGE 4, pretty much one as to what happens if one doesn't.
Glad to hear the son's was not malinant.
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