› Forums › General Melanoma Community › New here. Father diagnosed with Stage 3 melanoma.
- This topic has 45 replies, 7 voices, and was last updated 10 years, 1 month ago by
_Paul_.
- Post
-
- January 27, 2016 at 11:16 pm
Hi everyoneI have been lurking since my father’s initial diagnosis back in December. He had a mole on his chest that started bleeding. The biopsy came back as stage 3b tumor. 3.2 mm, ulcerated, mitotic rate 1. Doctor could feel a lymph node in the armpit enlarged so he asked for a scan, which came back clear with the exception of the node. Last Thursday he had a SNL which showed cancer in the suspected mole. While in surgery they took out a total of 8 nodes. We got the results back today, 2 of 8 were affected. The enlarged on was extracapsular, which really got me worried. The doctor wants to start Yervoy within two weeks. He said radiation was not necessary since the lymph nodes have all been taken out. Everything had clear margins.
I am really worried, how bad is this? I know it’s very advanced, but we were just thankful it had not spread to any other organs. Any help would be appreciated. Any advice? Is this the normal progression for treatment?
Thank you so much for reading, you seem like a wonderful community!
Ps. My mother has stage 3 breast cancer 14 years ago. 7 nodes involved. She is fine and has never had a recurrence. I guess this is what gives me hope and makes me not completely lose it.
- Replies
-
-
- January 28, 2016 at 12:09 am
So sorry your dad has to go through this. I am stage 3b and on Yervoy. I am thankful every day that I am stage 3 and not stage 4. Doing the Yervoy treatment has gone really well for me, very mild side effects so far. But, the side effects can be hard for some people. I am 29 and a healthy person in general, that is why I chose to do Yervoy, because I knew that if a serious side effect came up that I would be able to deal with it and get through it fairly quickly. Typically the options for our stage would now be Yervoy, watch and wait, or clinical trials. Not sure if your father's doctor laid out all of his options for him. Sounds like your mom had a similar experience with breast cancer and is doing really well, so, I hope that is the same experience for your father.
A lot of people fear the side effects of Yervoy, especially at the high dosage for stage 3. The way my oncologist laid it out, she basically said if I only make it through a couple of infusions, that's great, at least it's something. So, try not to worry too much over side effects for your father.
Try to stay positive for him and know that with all of the great advances in science recently for Melanoma, that he will be alright as there are many more better options now than there ever were.
All the best,
Jenn
-
- January 28, 2016 at 12:09 am
So sorry your dad has to go through this. I am stage 3b and on Yervoy. I am thankful every day that I am stage 3 and not stage 4. Doing the Yervoy treatment has gone really well for me, very mild side effects so far. But, the side effects can be hard for some people. I am 29 and a healthy person in general, that is why I chose to do Yervoy, because I knew that if a serious side effect came up that I would be able to deal with it and get through it fairly quickly. Typically the options for our stage would now be Yervoy, watch and wait, or clinical trials. Not sure if your father's doctor laid out all of his options for him. Sounds like your mom had a similar experience with breast cancer and is doing really well, so, I hope that is the same experience for your father.
A lot of people fear the side effects of Yervoy, especially at the high dosage for stage 3. The way my oncologist laid it out, she basically said if I only make it through a couple of infusions, that's great, at least it's something. So, try not to worry too much over side effects for your father.
Try to stay positive for him and know that with all of the great advances in science recently for Melanoma, that he will be alright as there are many more better options now than there ever were.
All the best,
Jenn
-
- January 28, 2016 at 1:06 am
Jen, thank you so much for the reply. I feel more positive already! Sorry you are having to deal with this, but your positive attitude is amazing, and that is half the battle.
He did warn us of the side affects, but it seemed there was no question in his mind Yervoy was the way to go. I asked what he would do if it were his dad and he said this was it.
I am wondering about the theroy that radiation helps make the Yervoy more effective. Anyone have any thoughts on this?
Again, thank you for the support!!
Annie
-
- January 28, 2016 at 1:06 am
Jen, thank you so much for the reply. I feel more positive already! Sorry you are having to deal with this, but your positive attitude is amazing, and that is half the battle.
He did warn us of the side affects, but it seemed there was no question in his mind Yervoy was the way to go. I asked what he would do if it were his dad and he said this was it.
I am wondering about the theroy that radiation helps make the Yervoy more effective. Anyone have any thoughts on this?
Again, thank you for the support!!
Annie
-
- January 28, 2016 at 1:06 am
Jen, thank you so much for the reply. I feel more positive already! Sorry you are having to deal with this, but your positive attitude is amazing, and that is half the battle.
He did warn us of the side affects, but it seemed there was no question in his mind Yervoy was the way to go. I asked what he would do if it were his dad and he said this was it.
I am wondering about the theroy that radiation helps make the Yervoy more effective. Anyone have any thoughts on this?
Again, thank you for the support!!
Annie
-
- January 28, 2016 at 12:09 am
So sorry your dad has to go through this. I am stage 3b and on Yervoy. I am thankful every day that I am stage 3 and not stage 4. Doing the Yervoy treatment has gone really well for me, very mild side effects so far. But, the side effects can be hard for some people. I am 29 and a healthy person in general, that is why I chose to do Yervoy, because I knew that if a serious side effect came up that I would be able to deal with it and get through it fairly quickly. Typically the options for our stage would now be Yervoy, watch and wait, or clinical trials. Not sure if your father's doctor laid out all of his options for him. Sounds like your mom had a similar experience with breast cancer and is doing really well, so, I hope that is the same experience for your father.
A lot of people fear the side effects of Yervoy, especially at the high dosage for stage 3. The way my oncologist laid it out, she basically said if I only make it through a couple of infusions, that's great, at least it's something. So, try not to worry too much over side effects for your father.
Try to stay positive for him and know that with all of the great advances in science recently for Melanoma, that he will be alright as there are many more better options now than there ever were.
All the best,
Jenn
-
- January 28, 2016 at 12:58 am
When your dad starts yervoy he needs to be careful about not getting sick. They tell you to stay away from the public as much as possible. I’m on yervoy 10mg just did my 2nd dose and feel fine so far. After my first dose I caught a cold from my daughter. Let me tell you it was x10 because I was on yervoy. Landed me in the hospital because it lowers your immune system. My advice wear a mask to and from treatments. Wash hands alot and avoid eating from the outside. Your dad is going to be ok. MELANOMa research has come a long way. Prayers for your dad. Greg -
- January 28, 2016 at 12:58 am
When your dad starts yervoy he needs to be careful about not getting sick. They tell you to stay away from the public as much as possible. I’m on yervoy 10mg just did my 2nd dose and feel fine so far. After my first dose I caught a cold from my daughter. Let me tell you it was x10 because I was on yervoy. Landed me in the hospital because it lowers your immune system. My advice wear a mask to and from treatments. Wash hands alot and avoid eating from the outside. Your dad is going to be ok. MELANOMa research has come a long way. Prayers for your dad. Greg-
- January 28, 2016 at 1:10 am
Greg, thank you for your reply. Good advise, we will keep him protected for sure so he does not get sick. I feel positive about all the advancements in melanoma. Seems it could almost turn into a chronic disease soon.
So glad you are doing well on the 10 mg dose, this is what my dad will be getting as well. And like Jenn said, even if one gets 1 or 2 infusions in, it will have done something.
Thank you!!
Annie
-
- January 28, 2016 at 1:10 am
Greg, thank you for your reply. Good advise, we will keep him protected for sure so he does not get sick. I feel positive about all the advancements in melanoma. Seems it could almost turn into a chronic disease soon.
So glad you are doing well on the 10 mg dose, this is what my dad will be getting as well. And like Jenn said, even if one gets 1 or 2 infusions in, it will have done something.
Thank you!!
Annie
-
- January 28, 2016 at 1:10 am
Greg, thank you for your reply. Good advise, we will keep him protected for sure so he does not get sick. I feel positive about all the advancements in melanoma. Seems it could almost turn into a chronic disease soon.
So glad you are doing well on the 10 mg dose, this is what my dad will be getting as well. And like Jenn said, even if one gets 1 or 2 infusions in, it will have done something.
Thank you!!
Annie
-
- January 28, 2016 at 2:02 pm
Hi Greg, I haven't heard of Ipi lowering the immune system or causing higher risks for cold or flu. My understanding of the drug is that it has a stimulating effect on t-cells by removing the blocking or inhibition that the immune system naturally has. There is a long list of Immune type reactions to look out for like Colitis and Skin reactions and a host of endocrine issue that can arise. These can occur do to the Immune system being turned on and not having the off switch in place any longer. I remember my Oncologist talking about ipi and that we can't wait too long to get started because ipi takes time to actually start working.
-
- January 28, 2016 at 2:02 pm
Hi Greg, I haven't heard of Ipi lowering the immune system or causing higher risks for cold or flu. My understanding of the drug is that it has a stimulating effect on t-cells by removing the blocking or inhibition that the immune system naturally has. There is a long list of Immune type reactions to look out for like Colitis and Skin reactions and a host of endocrine issue that can arise. These can occur do to the Immune system being turned on and not having the off switch in place any longer. I remember my Oncologist talking about ipi and that we can't wait too long to get started because ipi takes time to actually start working.
-
- January 28, 2016 at 2:23 pm
This was my understanding as well. It doesn't lower the immune system, it takes a brake off which makes you not more susceptible, but more reactive to little infections and similar stuff, your body would normally shake off w/o many symptoms.
The first time I had a flu shot post-yervoy, after several years of no reaction, I have a slight reaction of not feeling super great. My doc suggested it was probably just my immune system going a little nuts – which is fine, that's what they want.
-
- January 28, 2016 at 2:23 pm
This was my understanding as well. It doesn't lower the immune system, it takes a brake off which makes you not more susceptible, but more reactive to little infections and similar stuff, your body would normally shake off w/o many symptoms.
The first time I had a flu shot post-yervoy, after several years of no reaction, I have a slight reaction of not feeling super great. My doc suggested it was probably just my immune system going a little nuts – which is fine, that's what they want.
-
- January 28, 2016 at 2:23 pm
This was my understanding as well. It doesn't lower the immune system, it takes a brake off which makes you not more susceptible, but more reactive to little infections and similar stuff, your body would normally shake off w/o many symptoms.
The first time I had a flu shot post-yervoy, after several years of no reaction, I have a slight reaction of not feeling super great. My doc suggested it was probably just my immune system going a little nuts – which is fine, that's what they want.
-
- January 28, 2016 at 2:02 pm
Hi Greg, I haven't heard of Ipi lowering the immune system or causing higher risks for cold or flu. My understanding of the drug is that it has a stimulating effect on t-cells by removing the blocking or inhibition that the immune system naturally has. There is a long list of Immune type reactions to look out for like Colitis and Skin reactions and a host of endocrine issue that can arise. These can occur do to the Immune system being turned on and not having the off switch in place any longer. I remember my Oncologist talking about ipi and that we can't wait too long to get started because ipi takes time to actually start working.
-
- January 28, 2016 at 12:58 am
When your dad starts yervoy he needs to be careful about not getting sick. They tell you to stay away from the public as much as possible. I’m on yervoy 10mg just did my 2nd dose and feel fine so far. After my first dose I caught a cold from my daughter. Let me tell you it was x10 because I was on yervoy. Landed me in the hospital because it lowers your immune system. My advice wear a mask to and from treatments. Wash hands alot and avoid eating from the outside. Your dad is going to be ok. MELANOMa research has come a long way. Prayers for your dad. Greg -
- January 28, 2016 at 2:52 am
I just want to say that while none of this is what anyone wants to hear, some of us with extracapsular extensions are still doing well years later. I had several positive nodes with the extensions going into a muscle in by back. That was in 2001 and so far so good. Good luck to your dad. He's lucky to have you watching out for him!
DebbieH, stage 3C, NED 14+ years
-
- January 28, 2016 at 2:52 am
I just want to say that while none of this is what anyone wants to hear, some of us with extracapsular extensions are still doing well years later. I had several positive nodes with the extensions going into a muscle in by back. That was in 2001 and so far so good. Good luck to your dad. He's lucky to have you watching out for him!
DebbieH, stage 3C, NED 14+ years
-
- January 28, 2016 at 12:01 pm
Debbie, how wonderful to hear you are doing well after 14 years! Gives me hope! It seems with todays advancements it might not be all gloom and doom anymore. I am just thinking that the longer he can stay NED the more chances of a drug that can keep this from being a death sentence all together. It seems even as of today people are beating this even at Stage 4.
Thanks!!
-
- January 28, 2016 at 12:01 pm
Debbie, how wonderful to hear you are doing well after 14 years! Gives me hope! It seems with todays advancements it might not be all gloom and doom anymore. I am just thinking that the longer he can stay NED the more chances of a drug that can keep this from being a death sentence all together. It seems even as of today people are beating this even at Stage 4.
Thanks!!
-
- January 28, 2016 at 12:01 pm
Debbie, how wonderful to hear you are doing well after 14 years! Gives me hope! It seems with todays advancements it might not be all gloom and doom anymore. I am just thinking that the longer he can stay NED the more chances of a drug that can keep this from being a death sentence all together. It seems even as of today people are beating this even at Stage 4.
Thanks!!
-
- January 28, 2016 at 2:52 am
I just want to say that while none of this is what anyone wants to hear, some of us with extracapsular extensions are still doing well years later. I had several positive nodes with the extensions going into a muscle in by back. That was in 2001 and so far so good. Good luck to your dad. He's lucky to have you watching out for him!
DebbieH, stage 3C, NED 14+ years
-
- January 29, 2016 at 11:36 am
We found out yesterday that apparently there were 4 out of 12 nodes positive for cancer. 2 were macro and 2 micro. Apparently there is also a newly developed mole on his leg that was taking off at the lymph node surgery. I had seen it and didn’t like the way it looked. Surgeon said yesterday that she wants to take out more margins on it. I guess it is not in situ yet, just something pre stage. The oncologist had mentioned this as well and said this was not related to the initial melanoma. How can new ones pop up like that and have nothing to do with the first? So now we’re talking for involved nodes which makes it worse of course. We are going in to a dermatologist to check every single mole all over him, to make sure there are no other ones that she can take out when we do the surgery on the leg.Anybody had this happen?
-
- January 29, 2016 at 11:36 am
We found out yesterday that apparently there were 4 out of 12 nodes positive for cancer. 2 were macro and 2 micro. Apparently there is also a newly developed mole on his leg that was taking off at the lymph node surgery. I had seen it and didn’t like the way it looked. Surgeon said yesterday that she wants to take out more margins on it. I guess it is not in situ yet, just something pre stage. The oncologist had mentioned this as well and said this was not related to the initial melanoma. How can new ones pop up like that and have nothing to do with the first? So now we’re talking for involved nodes which makes it worse of course. We are going in to a dermatologist to check every single mole all over him, to make sure there are no other ones that she can take out when we do the surgery on the leg.Anybody had this happen?
-
- January 29, 2016 at 11:36 am
We found out yesterday that apparently there were 4 out of 12 nodes positive for cancer. 2 were macro and 2 micro. Apparently there is also a newly developed mole on his leg that was taking off at the lymph node surgery. I had seen it and didn’t like the way it looked. Surgeon said yesterday that she wants to take out more margins on it. I guess it is not in situ yet, just something pre stage. The oncologist had mentioned this as well and said this was not related to the initial melanoma. How can new ones pop up like that and have nothing to do with the first? So now we’re talking for involved nodes which makes it worse of course. We are going in to a dermatologist to check every single mole all over him, to make sure there are no other ones that she can take out when we do the surgery on the leg.Anybody had this happen?
-
- January 29, 2016 at 10:26 pm
A separate mole not in the same spot as the first one biopsied can be a new primary melanoma. Some people get more than 1 primary, and some don't. Or, it could not be melanoma and just atypical. It's good you are getting him to a derm for a full skin check, they will look all over and anything that apears abnormal could get biopsied. I just had my skin check this week and had a new growth biopsied… just got the call that it was benign. He will need to see a derm more often now, every 6 months. Any moles you or he can see, watch for change. If it doesn't change at all, should be fine. If something starts changing, get it checked out. Taking pictures can help too.
-
- January 29, 2016 at 10:26 pm
A separate mole not in the same spot as the first one biopsied can be a new primary melanoma. Some people get more than 1 primary, and some don't. Or, it could not be melanoma and just atypical. It's good you are getting him to a derm for a full skin check, they will look all over and anything that apears abnormal could get biopsied. I just had my skin check this week and had a new growth biopsied… just got the call that it was benign. He will need to see a derm more often now, every 6 months. Any moles you or he can see, watch for change. If it doesn't change at all, should be fine. If something starts changing, get it checked out. Taking pictures can help too.
-
- January 29, 2016 at 10:26 pm
A separate mole not in the same spot as the first one biopsied can be a new primary melanoma. Some people get more than 1 primary, and some don't. Or, it could not be melanoma and just atypical. It's good you are getting him to a derm for a full skin check, they will look all over and anything that apears abnormal could get biopsied. I just had my skin check this week and had a new growth biopsied… just got the call that it was benign. He will need to see a derm more often now, every 6 months. Any moles you or he can see, watch for change. If it doesn't change at all, should be fine. If something starts changing, get it checked out. Taking pictures can help too.
-
- January 30, 2016 at 7:41 pm
Thank You Jen for your reply. That clarified it for me. The surgeon seemed very adamant about getting clean margins on the leg. Enough to want to go back in and cut out more. We are going to see a different oncologist on Monday here locally. I need a second opinion, especially since our other oncologist did not explain the report well at all. I kind of lost faith in him somewhat. Another question is radiation. I spoke with my cousin who is a surgeon and he mentioned that they do radiation along with Yervoy sometimes. Especially with extracapsular extension. Just to kill off any cells that might have sneaked into tissue in the surrounding areas. Also he said there are some evidence that radiation will improve immunotherapy treatment. Any thoughts? -
- January 30, 2016 at 7:41 pm
Thank You Jen for your reply. That clarified it for me. The surgeon seemed very adamant about getting clean margins on the leg. Enough to want to go back in and cut out more. We are going to see a different oncologist on Monday here locally. I need a second opinion, especially since our other oncologist did not explain the report well at all. I kind of lost faith in him somewhat. Another question is radiation. I spoke with my cousin who is a surgeon and he mentioned that they do radiation along with Yervoy sometimes. Especially with extracapsular extension. Just to kill off any cells that might have sneaked into tissue in the surrounding areas. Also he said there are some evidence that radiation will improve immunotherapy treatment. Any thoughts?-
- January 30, 2016 at 8:35 pm
I don't know anything about radiation myself. It was never presented to me by either oncologist I have seen, and I don't think I would have gone for it, just since the primary melanoma was removed, I am not sure how radiation really helps if there isn't anything visible to take care of. But, like I said, I really don't know much since it was never a part of my treatment plan. I think getting a second opinion is a great idea. That is what I did and I have switched insurance in order to be able to see the second oncologist, who is a melanoma specialist. I had my third infusion last week which was the first time at the new hospital after insurance change and it was a world of difference. It was a much better experience than what I had before. So, exploring all options in your area is always a good idea.
-
- January 30, 2016 at 8:35 pm
I don't know anything about radiation myself. It was never presented to me by either oncologist I have seen, and I don't think I would have gone for it, just since the primary melanoma was removed, I am not sure how radiation really helps if there isn't anything visible to take care of. But, like I said, I really don't know much since it was never a part of my treatment plan. I think getting a second opinion is a great idea. That is what I did and I have switched insurance in order to be able to see the second oncologist, who is a melanoma specialist. I had my third infusion last week which was the first time at the new hospital after insurance change and it was a world of difference. It was a much better experience than what I had before. So, exploring all options in your area is always a good idea.
-
- January 30, 2016 at 8:35 pm
I don't know anything about radiation myself. It was never presented to me by either oncologist I have seen, and I don't think I would have gone for it, just since the primary melanoma was removed, I am not sure how radiation really helps if there isn't anything visible to take care of. But, like I said, I really don't know much since it was never a part of my treatment plan. I think getting a second opinion is a great idea. That is what I did and I have switched insurance in order to be able to see the second oncologist, who is a melanoma specialist. I had my third infusion last week which was the first time at the new hospital after insurance change and it was a world of difference. It was a much better experience than what I had before. So, exploring all options in your area is always a good idea.
-
- February 4, 2016 at 2:15 pm
Radiation plus immunotherapy is thought to have a so called abscopal effect. The idea is that damaging a tumor with radiation releases antigens (bits of protein from the cancer cells) that are then detected by the immune system. So in laymen's terms the antigens wake up your immune system which has already had its "brakes taken off' by the immunotherapy.
I took part in a RAD-VAX trial in Seattle that combined radiation with ipi. The trial is to measure the abscopal effect.
Wishing you the best – Paul
-
- February 4, 2016 at 2:15 pm
Radiation plus immunotherapy is thought to have a so called abscopal effect. The idea is that damaging a tumor with radiation releases antigens (bits of protein from the cancer cells) that are then detected by the immune system. So in laymen's terms the antigens wake up your immune system which has already had its "brakes taken off' by the immunotherapy.
I took part in a RAD-VAX trial in Seattle that combined radiation with ipi. The trial is to measure the abscopal effect.
Wishing you the best – Paul
-
- February 4, 2016 at 2:15 pm
Radiation plus immunotherapy is thought to have a so called abscopal effect. The idea is that damaging a tumor with radiation releases antigens (bits of protein from the cancer cells) that are then detected by the immune system. So in laymen's terms the antigens wake up your immune system which has already had its "brakes taken off' by the immunotherapy.
I took part in a RAD-VAX trial in Seattle that combined radiation with ipi. The trial is to measure the abscopal effect.
Wishing you the best – Paul
-
- January 30, 2016 at 7:41 pm
Thank You Jen for your reply. That clarified it for me. The surgeon seemed very adamant about getting clean margins on the leg. Enough to want to go back in and cut out more. We are going to see a different oncologist on Monday here locally. I need a second opinion, especially since our other oncologist did not explain the report well at all. I kind of lost faith in him somewhat. Another question is radiation. I spoke with my cousin who is a surgeon and he mentioned that they do radiation along with Yervoy sometimes. Especially with extracapsular extension. Just to kill off any cells that might have sneaked into tissue in the surrounding areas. Also he said there are some evidence that radiation will improve immunotherapy treatment. Any thoughts?
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.