Just got diagnosed with stage 4 metastatic

Hi… and an unfortunate "welcome" to the group. You will find a lot of success stories here, including those of us in the stage IV category. My situation was not terribly unlike yours. Stage 1a removed from the right shoulder in July 2007. Progressed to stage IV in April 2013, despite regular check ups. Mine metastisized to the lungs and brain. Opdivo and Yervoy are the strongest combo in current FDA approved status. My path was a little different, because although Yervoy was available, Pembro and Opdivo (both anti-PD1 targeting agents) were not yet FDA approved, and I could not enter trials due to uncontrolled brain metastasis. However… even with the need to take the long way around, I'm still here nearly 4 years later, and showing no signs of disease. You have a strong shot at beating this and watching your children grow up to have families of their own!

Hopefully some of the folks who have personal experience with the Opdivo/Yervoy combo will chime in on how often the treatments are, and what their general side effects were. But, there are also folks here with a wealth of current knowledge simply through discussions with fellow fighters as well as information gathered via scientific abstracts, articles, and conferences. 

I know the feeling of terror, and the fear of questioning whether you will make it to that next birthday or holiday celebration. Once you have a plan in place that you and your oncology team are comfortable with, much of that tension will ease. A second opinion is a fantastic idea, particularly with a melanoma specialist at a comprehensive cancer center. You mentioned "Penn"…. is that UPenn Abramson?

Hug the wife and little ones, and hold strong. I think you'll find that 12-18 months turning into a much longer span of time. Even some of those who have "failed" the current FDA approved meds, are around the forum here, still battling through this beyond the 18 month mark. 

Hi… and an unfortunate "welcome" to the group. You will find a lot of success stories here, including those of us in the stage IV category. My situation was not terribly unlike yours. Stage 1a removed from the right shoulder in July 2007. Progressed to stage IV in April 2013, despite regular check ups. Mine metastisized to the lungs and brain. Opdivo and Yervoy are the strongest combo in current FDA approved status. My path was a little different, because although Yervoy was available, Pembro and Opdivo (both anti-PD1 targeting agents) were not yet FDA approved, and I could not enter trials due to uncontrolled brain metastasis. However… even with the need to take the long way around, I'm still here nearly 4 years later, and showing no signs of disease. You have a strong shot at beating this and watching your children grow up to have families of their own!

Hopefully some of the folks who have personal experience with the Opdivo/Yervoy combo will chime in on how often the treatments are, and what their general side effects were. But, there are also folks here with a wealth of current knowledge simply through discussions with fellow fighters as well as information gathered via scientific abstracts, articles, and conferences. 

I know the feeling of terror, and the fear of questioning whether you will make it to that next birthday or holiday celebration. Once you have a plan in place that you and your oncology team are comfortable with, much of that tension will ease. A second opinion is a fantastic idea, particularly with a melanoma specialist at a comprehensive cancer center. You mentioned "Penn"…. is that UPenn Abramson?

Hug the wife and little ones, and hold strong. I think you'll find that 12-18 months turning into a much longer span of time. Even some of those who have "failed" the current FDA approved meds, are around the forum here, still battling through this beyond the 18 month mark. 

Hi… and an unfortunate "welcome" to the group. You will find a lot of success stories here, including those of us in the stage IV category. My situation was not terribly unlike yours. Stage 1a removed from the right shoulder in July 2007. Progressed to stage IV in April 2013, despite regular check ups. Mine metastisized to the lungs and brain. Opdivo and Yervoy are the strongest combo in current FDA approved status. My path was a little different, because although Yervoy was available, Pembro and Opdivo (both anti-PD1 targeting agents) were not yet FDA approved, and I could not enter trials due to uncontrolled brain metastasis. However… even with the need to take the long way around, I'm still here nearly 4 years later, and showing no signs of disease. You have a strong shot at beating this and watching your children grow up to have families of their own!

Hopefully some of the folks who have personal experience with the Opdivo/Yervoy combo will chime in on how often the treatments are, and what their general side effects were. But, there are also folks here with a wealth of current knowledge simply through discussions with fellow fighters as well as information gathered via scientific abstracts, articles, and conferences. 

I know the feeling of terror, and the fear of questioning whether you will make it to that next birthday or holiday celebration. Once you have a plan in place that you and your oncology team are comfortable with, much of that tension will ease. A second opinion is a fantastic idea, particularly with a melanoma specialist at a comprehensive cancer center. You mentioned "Penn"…. is that UPenn Abramson?

Hug the wife and little ones, and hold strong. I think you'll find that 12-18 months turning into a much longer span of time. Even some of those who have "failed" the current FDA approved meds, are around the forum here, still battling through this beyond the 18 month mark. 

The summer of 2015 I had 2 melanomas removed, one from my forehead and from my crown which was stage 2b. PET scan did not show anything. June of this year I was drying off after a shower and felt a lump in my lower neck upper shoulder area. I knew what it was as soon as I felt it. I had anothe full body PET scan the next week followed by surgury to remove the tumor in my neck. PET scan had 7 tumors in my lungs. The largest was 1.7 cm. I started the NIVO/IPI combo a couple of weeks later as I was told it was the best way to fight for my life. I was very happy the second week after my fisrt dose to see the rash developing on my arms, my body was reacting to the drugs and therefore working. The first 6 to 8 weeks I had very little appetite and lost 28 pounds which was a good thing. Lost of fatigue during that time. Just after the second dose I developed a fever that lasted 6 weeks which was a pain but I stayed ahead of it with motrin. I have had a dry mouth for about 10 weeks now and my sweet and salty taste buds are kinda messed up. I started getting vitiligo about 5 weeks ago which I found out yesterday was a very positive sign. There is another thread on here about vitiligo. My 14 week scan had 3 tumors that were either gone or had dead tissue left, 2 tumors down to 2mm and 2.5 mm and the other 2 down to 1 cm from 1.4 and 1.7 cm. I get my 4th dose of just nivo tomorrow and then I go back to the combo for the maintanance part. I have been very lucky on the side effects as I never got the dreaded stomach issues. I am the first veteran at Audie Murphy VA hospital in San Antonio to get the combo treatment as my health was good enough to risk the side effects. The first 6 weeks I worked when I was not to tired but since I have pretty much worked 40 hour weeks except to go for treatment. My appetite is back and everyone tells me I look good even though they never told me that before I got sick. My sister has worked at a cancer treatment center in the Dallas/Ft.Worth area for over 30 years. I have had her run all of my treatment plans, radiology reports through her doctors. I have even sent copies of the PET scans and MRI and they have agreed with my VA Drs on everything so far. I am BRAF negative also. I do think you will probably be given a higher dose of Yervoy than I had since you have more wide spread cancer than I had. I was on 3mg per kilo of weight. I have read where others were on 10mg and developed bad side effects within the first week or 2. I guess I would say the combo for me has worked as well as I could have hope for based on results so far and on the low side effects I have had.

The summer of 2015 I had 2 melanomas removed, one from my forehead and from my crown which was stage 2b. PET scan did not show anything. June of this year I was drying off after a shower and felt a lump in my lower neck upper shoulder area. I knew what it was as soon as I felt it. I had anothe full body PET scan the next week followed by surgury to remove the tumor in my neck. PET scan had 7 tumors in my lungs. The largest was 1.7 cm. I started the NIVO/IPI combo a couple of weeks later as I was told it was the best way to fight for my life. I was very happy the second week after my fisrt dose to see the rash developing on my arms, my body was reacting to the drugs and therefore working. The first 6 to 8 weeks I had very little appetite and lost 28 pounds which was a good thing. Lost of fatigue during that time. Just after the second dose I developed a fever that lasted 6 weeks which was a pain but I stayed ahead of it with motrin. I have had a dry mouth for about 10 weeks now and my sweet and salty taste buds are kinda messed up. I started getting vitiligo about 5 weeks ago which I found out yesterday was a very positive sign. There is another thread on here about vitiligo. My 14 week scan had 3 tumors that were either gone or had dead tissue left, 2 tumors down to 2mm and 2.5 mm and the other 2 down to 1 cm from 1.4 and 1.7 cm. I get my 4th dose of just nivo tomorrow and then I go back to the combo for the maintanance part. I have been very lucky on the side effects as I never got the dreaded stomach issues. I am the first veteran at Audie Murphy VA hospital in San Antonio to get the combo treatment as my health was good enough to risk the side effects. The first 6 weeks I worked when I was not to tired but since I have pretty much worked 40 hour weeks except to go for treatment. My appetite is back and everyone tells me I look good even though they never told me that before I got sick. My sister has worked at a cancer treatment center in the Dallas/Ft.Worth area for over 30 years. I have had her run all of my treatment plans, radiology reports through her doctors. I have even sent copies of the PET scans and MRI and they have agreed with my VA Drs on everything so far. I am BRAF negative also. I do think you will probably be given a higher dose of Yervoy than I had since you have more wide spread cancer than I had. I was on 3mg per kilo of weight. I have read where others were on 10mg and developed bad side effects within the first week or 2. I guess I would say the combo for me has worked as well as I could have hope for based on results so far and on the low side effects I have had.

The summer of 2015 I had 2 melanomas removed, one from my forehead and from my crown which was stage 2b. PET scan did not show anything. June of this year I was drying off after a shower and felt a lump in my lower neck upper shoulder area. I knew what it was as soon as I felt it. I had anothe full body PET scan the next week followed by surgury to remove the tumor in my neck. PET scan had 7 tumors in my lungs. The largest was 1.7 cm. I started the NIVO/IPI combo a couple of weeks later as I was told it was the best way to fight for my life. I was very happy the second week after my fisrt dose to see the rash developing on my arms, my body was reacting to the drugs and therefore working. The first 6 to 8 weeks I had very little appetite and lost 28 pounds which was a good thing. Lost of fatigue during that time. Just after the second dose I developed a fever that lasted 6 weeks which was a pain but I stayed ahead of it with motrin. I have had a dry mouth for about 10 weeks now and my sweet and salty taste buds are kinda messed up. I started getting vitiligo about 5 weeks ago which I found out yesterday was a very positive sign. There is another thread on here about vitiligo. My 14 week scan had 3 tumors that were either gone or had dead tissue left, 2 tumors down to 2mm and 2.5 mm and the other 2 down to 1 cm from 1.4 and 1.7 cm. I get my 4th dose of just nivo tomorrow and then I go back to the combo for the maintanance part. I have been very lucky on the side effects as I never got the dreaded stomach issues. I am the first veteran at Audie Murphy VA hospital in San Antonio to get the combo treatment as my health was good enough to risk the side effects. The first 6 weeks I worked when I was not to tired but since I have pretty much worked 40 hour weeks except to go for treatment. My appetite is back and everyone tells me I look good even though they never told me that before I got sick. My sister has worked at a cancer treatment center in the Dallas/Ft.Worth area for over 30 years. I have had her run all of my treatment plans, radiology reports through her doctors. I have even sent copies of the PET scans and MRI and they have agreed with my VA Drs on everything so far. I am BRAF negative also. I do think you will probably be given a higher dose of Yervoy than I had since you have more wide spread cancer than I had. I was on 3mg per kilo of weight. I have read where others were on 10mg and developed bad side effects within the first week or 2. I guess I would say the combo for me has worked as well as I could have hope for based on results so far and on the low side effects I have had.