The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Melanoma in the Lungs

Forums General Melanoma Community Melanoma in the Lungs

  • Post
    eric w
    Participant

    Hi all,

     

    Hi all,

     

    My wife was diagnosed with melanoma on her arm 2 years ago. We live in Las Vegas and went to UCLA for the removal of the mole. I forget the number it was but it was ulcerated. It was removed and lymph nodes were clean. she has been getting pet/ct scans over the last two years. On the scans some subcentimeter nodules were noted without growth. This last scan 5 of the nodules hat grown but still subcentimeter….we are going to UCLA next friday and are waiting for mutation results…I have just started to read about treatments but wanted some input…first i need another facility to take my wife for second opinion…luckily we have the means to go where we need….again i live in Las Vegas….

     

    my second is what type of treatment should i be expecting to hear….it seems that Yervoy is a good option or IL-2 i think it was….all the rest of her scans have been clean so far….also should we be looking at the PD-1 as well??? sorry for so many questions…scarried out of my mind….

     

    by the way my wife is a beautiful healthy 42 years old…..thanks

Viewing 23 reply threads
  • Replies
      POW
      Participant

      I am sorry to hear that your wife has progressed to Stage IV. However, I am delighted that she was smart enough to be very vigilant, get frequent scans, and discover this progression almost immediately. This greatly improves her chances of living a long and happy life. 

      Since you are new to this phase of the disease and are anxious for information, I suggest that you view the series of webinars on the Melanoma International Foundation web site. They have 8 or 10 webinars presented by nationally recognized melanoma experts and each webinars covers a different type of treatment– radiation, targeted chemotherapies like BRAF, anti-PD1, etc. 

      We're on the East coast so I can't say much about West coast melanoma speciaists, but I have read a number of very positive things about the Angeles Clinic in LA. I think it's a good idea to go to a melanoma specialty clinic that participates in a lot clinical trials. That way, you can not only get an expert second opinion now, but if your wife decides to participate in a clinical trial at a later date, you will have an established medical  history and case file and the administrative (e.g. insurance) issues will all be settled. 

      POW
      Participant

      I am sorry to hear that your wife has progressed to Stage IV. However, I am delighted that she was smart enough to be very vigilant, get frequent scans, and discover this progression almost immediately. This greatly improves her chances of living a long and happy life. 

      Since you are new to this phase of the disease and are anxious for information, I suggest that you view the series of webinars on the Melanoma International Foundation web site. They have 8 or 10 webinars presented by nationally recognized melanoma experts and each webinars covers a different type of treatment– radiation, targeted chemotherapies like BRAF, anti-PD1, etc. 

      We're on the East coast so I can't say much about West coast melanoma speciaists, but I have read a number of very positive things about the Angeles Clinic in LA. I think it's a good idea to go to a melanoma specialty clinic that participates in a lot clinical trials. That way, you can not only get an expert second opinion now, but if your wife decides to participate in a clinical trial at a later date, you will have an established medical  history and case file and the administrative (e.g. insurance) issues will all be settled. 

        eric w
        Participant

        Thanks

        eric w
        Participant

        Thanks

        eric w
        Participant

        Thanks

      POW
      Participant

      I am sorry to hear that your wife has progressed to Stage IV. However, I am delighted that she was smart enough to be very vigilant, get frequent scans, and discover this progression almost immediately. This greatly improves her chances of living a long and happy life. 

      Since you are new to this phase of the disease and are anxious for information, I suggest that you view the series of webinars on the Melanoma International Foundation web site. They have 8 or 10 webinars presented by nationally recognized melanoma experts and each webinars covers a different type of treatment– radiation, targeted chemotherapies like BRAF, anti-PD1, etc. 

      We're on the East coast so I can't say much about West coast melanoma speciaists, but I have read a number of very positive things about the Angeles Clinic in LA. I think it's a good idea to go to a melanoma specialty clinic that participates in a lot clinical trials. That way, you can not only get an expert second opinion now, but if your wife decides to participate in a clinical trial at a later date, you will have an established medical  history and case file and the administrative (e.g. insurance) issues will all be settled. 

      Janner
      Participant

      I know Dr. Wolfram Samlowsky moved to Vegas from SLC (NCI designated Cancer Center) a couple of years back.  He's a well respected melanoma specialist and I believe immunotherapy treatments (IL-2, Yervoy) have always been his focus.  You might just check locally for an opinion, too.  Not sure where he is but didn't you just have a new cancer center open up there?

      Best wishes,

      Janner

      Janner
      Participant

      I know Dr. Wolfram Samlowsky moved to Vegas from SLC (NCI designated Cancer Center) a couple of years back.  He's a well respected melanoma specialist and I believe immunotherapy treatments (IL-2, Yervoy) have always been his focus.  You might just check locally for an opinion, too.  Not sure where he is but didn't you just have a new cancer center open up there?

      Best wishes,

      Janner

        eric w
        Participant

        Hi…yes we actually loooked him up when it was orginally detected on her…there was a center up here that he was at but could not track him down…as far as a new center i have not heard of one but will take a look…emotions up and down….but i have decided i will be as strong as i can be for her during this time…BUT IM SCARED AS HELL…thanks again

        eric w
        Participant

        Hi…yes we actually loooked him up when it was orginally detected on her…there was a center up here that he was at but could not track him down…as far as a new center i have not heard of one but will take a look…emotions up and down….but i have decided i will be as strong as i can be for her during this time…BUT IM SCARED AS HELL…thanks again

        eric w
        Participant

        Hi…yes we actually loooked him up when it was orginally detected on her…there was a center up here that he was at but could not track him down…as far as a new center i have not heard of one but will take a look…emotions up and down….but i have decided i will be as strong as i can be for her during this time…BUT IM SCARED AS HELL…thanks again

      Janner
      Participant

      I know Dr. Wolfram Samlowsky moved to Vegas from SLC (NCI designated Cancer Center) a couple of years back.  He's a well respected melanoma specialist and I believe immunotherapy treatments (IL-2, Yervoy) have always been his focus.  You might just check locally for an opinion, too.  Not sure where he is but didn't you just have a new cancer center open up there?

      Best wishes,

      Janner

      Gene_S
      Participant

      Hello,

      Sorry to hear your wife has progressed to this stage.  I do not know which areas for you would be best since I am no where near your area.  

      I do want to say get copies of all scans and procedures so if you do find someone you would like a consult with you will already have the copies and it may make it faster and easier to be prepared or help you get an appointment quicker.

      When you know more come back and ask more questions because many knowledgeable people are on this site with much experience as well.

      Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

      Gene_S
      Participant

      Hello,

      Sorry to hear your wife has progressed to this stage.  I do not know which areas for you would be best since I am no where near your area.  

      I do want to say get copies of all scans and procedures so if you do find someone you would like a consult with you will already have the copies and it may make it faster and easier to be prepared or help you get an appointment quicker.

      When you know more come back and ask more questions because many knowledgeable people are on this site with much experience as well.

      Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

        eric w
        Participant

        Hi thanks….yeah we are in the process of getting all her records…have most but getting images now…looking at MD Anderson in Houston or the Clinic in LA…I'm hopefull that us being proactive like we were with all her scans and 3 month vistits have caught this in time…thanks for all the replies

        eric w
        Participant

        Hi thanks….yeah we are in the process of getting all her records…have most but getting images now…looking at MD Anderson in Houston or the Clinic in LA…I'm hopefull that us being proactive like we were with all her scans and 3 month vistits have caught this in time…thanks for all the replies

        eric w
        Participant

        Hi thanks….yeah we are in the process of getting all her records…have most but getting images now…looking at MD Anderson in Houston or the Clinic in LA…I'm hopefull that us being proactive like we were with all her scans and 3 month vistits have caught this in time…thanks for all the replies

      Gene_S
      Participant

      Hello,

      Sorry to hear your wife has progressed to this stage.  I do not know which areas for you would be best since I am no where near your area.  

      I do want to say get copies of all scans and procedures so if you do find someone you would like a consult with you will already have the copies and it may make it faster and easier to be prepared or help you get an appointment quicker.

      When you know more come back and ask more questions because many knowledgeable people are on this site with much experience as well.

      Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

      JC
      Participant

      Do you know what stage it was initially?  If the nodes were clean, had to be either Stage I or II.  That is what is scary about not scanning Stage I patients, not catching it early.  Good wishes to you.

      JC
      Participant

      Do you know what stage it was initially?  If the nodes were clean, had to be either Stage I or II.  That is what is scary about not scanning Stage I patients, not catching it early.  Good wishes to you.

        eric w
        Participant

        Thanks…im in the process of pulling paperwork…it was 2 years ago and evn though i go every 3 months with her to UCLA the stage # i have forgot..it was high though due to the ulceration and such…i will post when i pull the paperwork…but we have been doing pet/ct scans every 6 months…i hope this one fact help her get through this…thanks again

        eric w
        Participant

        Thanks…im in the process of pulling paperwork…it was 2 years ago and evn though i go every 3 months with her to UCLA the stage # i have forgot..it was high though due to the ulceration and such…i will post when i pull the paperwork…but we have been doing pet/ct scans every 6 months…i hope this one fact help her get through this…thanks again

        killmel
        Participant

        As far as I am concerned you cannot do better for a Center of Excellene than UCLA. Dr. Ribas is a melanoma expert & he has many of the newest Clinical trials.

        Here is his contact info:

        aribas@mednet.ucla.edu
        310 206-3928

        Dr. Ribas returns emails & calls. He really cares about the patient

        killmel
        Participant

        As far as I am concerned you cannot do better for a Center of Excellene than UCLA. Dr. Ribas is a melanoma expert & he has many of the newest Clinical trials.

        Here is his contact info:

        aribas@mednet.ucla.edu
        310 206-3928

        Dr. Ribas returns emails & calls. He really cares about the patient

        killmel
        Participant

        Another Melanoma expert/specialist is Steven O'day. He gas worked in melanoma research & melanoma clinical trials for years. He is a wonderful caring doctor.

        Here is his contact info:

        Beverly Hills Cancer Center

        (800) TO-HEALTH

        soday@bhcancercenter.com

        killmel
        Participant

        Another Melanoma expert/specialist is Steven O'day. He gas worked in melanoma research & melanoma clinical trials for years. He is a wonderful caring doctor.

        Here is his contact info:

        Beverly Hills Cancer Center

        (800) TO-HEALTH

        soday@bhcancercenter.com

        eric w
        Participant

        Thanks

        eric w
        Participant

        Thanks

        eric w
        Participant

        Thanks

        killmel
        Participant

        Another Melanoma expert/specialist is Steven O'day. He gas worked in melanoma research & melanoma clinical trials for years. He is a wonderful caring doctor.

        Here is his contact info:

        Beverly Hills Cancer Center

        (800) TO-HEALTH

        soday@bhcancercenter.com

        killmel
        Participant

        As far as I am concerned you cannot do better for a Center of Excellene than UCLA. Dr. Ribas is a melanoma expert & he has many of the newest Clinical trials.

        Here is his contact info:

        aribas@mednet.ucla.edu
        310 206-3928

        Dr. Ribas returns emails & calls. He really cares about the patient

        eric w
        Participant

        Thanks…im in the process of pulling paperwork…it was 2 years ago and evn though i go every 3 months with her to UCLA the stage # i have forgot..it was high though due to the ulceration and such…i will post when i pull the paperwork…but we have been doing pet/ct scans every 6 months…i hope this one fact help her get through this…thanks again

      JC
      Participant

      Do you know what stage it was initially?  If the nodes were clean, had to be either Stage I or II.  That is what is scary about not scanning Stage I patients, not catching it early.  Good wishes to you.

      gabsound
      Participant
      Hi,

      I am a patient of DR Samlowki’s here in Las Vegas. He is great- very knowledgeable and very thorough. I have done interferon w him, as well as biochemo and 2 rounds of Yervoy. My current treatment is Anti PD1 trial which he sought out for me at The Angeles Clinic w Dr Hamid.

      He is at Comprehensive Cancer Centers of Nevada.
      Phone number at office ( sunset location ) 702-952-1251

      His email is wolf.smalowski@usoncology.com

      Best of luck to you,

      Julie

      gabsound
      Participant
      Hi,

      I am a patient of DR Samlowki’s here in Las Vegas. He is great- very knowledgeable and very thorough. I have done interferon w him, as well as biochemo and 2 rounds of Yervoy. My current treatment is Anti PD1 trial which he sought out for me at The Angeles Clinic w Dr Hamid.

      He is at Comprehensive Cancer Centers of Nevada.
      Phone number at office ( sunset location ) 702-952-1251

      His email is wolf.smalowski@usoncology.com

      Best of luck to you,

      Julie

        eric w
        Participant

        Thanks…we have an appointment setup with Dr. Kim at MD Anderson in Houston. Thanks

        eric w
        Participant

        Thanks…we have an appointment setup with Dr. Kim at MD Anderson in Houston. Thanks

        POW
        Participant

        Good choice! Let us know how it goes.

        POW
        Participant

        Good choice! Let us know how it goes.

        POW
        Participant

        Good choice! Let us know how it goes.

        eric w
        Participant

        Thanks…we have an appointment setup with Dr. Kim at MD Anderson in Houston. Thanks

      gabsound
      Participant
      Hi,

      I am a patient of DR Samlowki’s here in Las Vegas. He is great- very knowledgeable and very thorough. I have done interferon w him, as well as biochemo and 2 rounds of Yervoy. My current treatment is Anti PD1 trial which he sought out for me at The Angeles Clinic w Dr Hamid.

      He is at Comprehensive Cancer Centers of Nevada.
      Phone number at office ( sunset location ) 702-952-1251

      His email is wolf.smalowski@usoncology.com

      Best of luck to you,

      Julie

      eric w
      Participant

      Hi all,

       

      i was wondering if anyone out there has been in a similar situation as my wife with postive results. I have been looking on this site and others and i seem to harp on the negative. Just wanting some light that my wife has a chance against this crap. Thanks

      eric w
      Participant

      Hi all,

       

      i was wondering if anyone out there has been in a similar situation as my wife with postive results. I have been looking on this site and others and i seem to harp on the negative. Just wanting some light that my wife has a chance against this crap. Thanks

      eric w
      Participant

      Hi all,

       

      i was wondering if anyone out there has been in a similar situation as my wife with postive results. I have been looking on this site and others and i seem to harp on the negative. Just wanting some light that my wife has a chance against this crap. Thanks

        POW
        Participant

        Hi, Eric-

        Oh my, yes! There are many, many long term survivors of Stage IV! Many years, sometimes many decades, even some young parents who posted here about dancing at their daughter's (or son's) wedding. And that's just people who underwent melanoma treatment in the "bad old days". Not enough years have passed yet for us to have real survival data from the newer treatments. 

        I think it is very important for you and you wife to understand that there have been MAJOR breakthroughs in melanoma treatment in the last 4 or 5 years. And many other newer and even more effective treatments are entering clinical trials all the time. That means that most of the stastics you read about melanoma prognosis are OUT OF DATE. Survival and quality of life now is very different than it was 5 years ago. In terms of prognosis I, personally, don't pay much attention to anything written before 2010. And that goes for doctors, too. I have met several older, experienced doctors who can't seem to let go of the old, depressing statistics. Sometimes they can't let go of the old, ineffective treatments, either (like the doctor who wanted to do whole brain radiation for one tumor rather than the much less invasive Cyberknife treatment). 

        So stop reading the old literature and old web sites. Look at the webinars on the Melanoma International Foundation website for what's happening now in melanoma. And search for and read Charlie S's post Re: Stage IV..Roll Call for the Undead Please here on the MPIP forum. You and your wife have a LOT of reason to be optimistic!

        eric w
        Participant

        Thanks so much…I realize things have gotten much better for Melanoma the past few years…however the last few days have been a rollacoaster for both of us…and realize a lot more is to come….so thanks for the words of encouragment…we have three small kids that we are going to be talking to the next few days…so again just crazy as im sure everyone has experianced…

         

        anyhow we go to UCLA next Friday to meet with my wifes onc for treatment options…then the following thurday we meet with Dr. Kim at MD Anderson for a second opinion..then we will choose a path and run with it….again im hoping the fact that the nodules found were subcentimeter in size…

         

        Again thanks for all the comments and help to you all…i plan on either a blog or as much detail in my/her profile as i can…..

        Ali
        Participant

        There are survivors.  You guys are at a hard part of this journey, waiting for appointments and deciding what to do.  As a young mom of 3 boys, I think I did better when I knew what the treatment plan was and could put all my energy into that plan.  I wanted to start the fight!!  Good luck to your little family!  You can do this!

        Ali
        Participant

        There are survivors.  You guys are at a hard part of this journey, waiting for appointments and deciding what to do.  As a young mom of 3 boys, I think I did better when I knew what the treatment plan was and could put all my energy into that plan.  I wanted to start the fight!!  Good luck to your little family!  You can do this!

        eric w
        Participant

        Thanks…so much for the words…they help a lot

        eric w
        Participant

        Thanks…so much for the words…they help a lot

        eric w
        Participant

        Thanks…so much for the words…they help a lot

        Ali
        Participant

        There are survivors.  You guys are at a hard part of this journey, waiting for appointments and deciding what to do.  As a young mom of 3 boys, I think I did better when I knew what the treatment plan was and could put all my energy into that plan.  I wanted to start the fight!!  Good luck to your little family!  You can do this!

        eric w
        Participant

        Thanks so much…I realize things have gotten much better for Melanoma the past few years…however the last few days have been a rollacoaster for both of us…and realize a lot more is to come….so thanks for the words of encouragment…we have three small kids that we are going to be talking to the next few days…so again just crazy as im sure everyone has experianced…

         

        anyhow we go to UCLA next Friday to meet with my wifes onc for treatment options…then the following thurday we meet with Dr. Kim at MD Anderson for a second opinion..then we will choose a path and run with it….again im hoping the fact that the nodules found were subcentimeter in size…

         

        Again thanks for all the comments and help to you all…i plan on either a blog or as much detail in my/her profile as i can…..

        eric w
        Participant

        Thanks so much…I realize things have gotten much better for Melanoma the past few years…however the last few days have been a rollacoaster for both of us…and realize a lot more is to come….so thanks for the words of encouragment…we have three small kids that we are going to be talking to the next few days…so again just crazy as im sure everyone has experianced…

         

        anyhow we go to UCLA next Friday to meet with my wifes onc for treatment options…then the following thurday we meet with Dr. Kim at MD Anderson for a second opinion..then we will choose a path and run with it….again im hoping the fact that the nodules found were subcentimeter in size…

         

        Again thanks for all the comments and help to you all…i plan on either a blog or as much detail in my/her profile as i can…..

        POW
        Participant

        Hi, Eric-

        Oh my, yes! There are many, many long term survivors of Stage IV! Many years, sometimes many decades, even some young parents who posted here about dancing at their daughter's (or son's) wedding. And that's just people who underwent melanoma treatment in the "bad old days". Not enough years have passed yet for us to have real survival data from the newer treatments. 

        I think it is very important for you and you wife to understand that there have been MAJOR breakthroughs in melanoma treatment in the last 4 or 5 years. And many other newer and even more effective treatments are entering clinical trials all the time. That means that most of the stastics you read about melanoma prognosis are OUT OF DATE. Survival and quality of life now is very different than it was 5 years ago. In terms of prognosis I, personally, don't pay much attention to anything written before 2010. And that goes for doctors, too. I have met several older, experienced doctors who can't seem to let go of the old, depressing statistics. Sometimes they can't let go of the old, ineffective treatments, either (like the doctor who wanted to do whole brain radiation for one tumor rather than the much less invasive Cyberknife treatment). 

        So stop reading the old literature and old web sites. Look at the webinars on the Melanoma International Foundation website for what's happening now in melanoma. And search for and read Charlie S's post Re: Stage IV..Roll Call for the Undead Please here on the MPIP forum. You and your wife have a LOT of reason to be optimistic!

        POW
        Participant

        Hi, Eric-

        Oh my, yes! There are many, many long term survivors of Stage IV! Many years, sometimes many decades, even some young parents who posted here about dancing at their daughter's (or son's) wedding. And that's just people who underwent melanoma treatment in the "bad old days". Not enough years have passed yet for us to have real survival data from the newer treatments. 

        I think it is very important for you and you wife to understand that there have been MAJOR breakthroughs in melanoma treatment in the last 4 or 5 years. And many other newer and even more effective treatments are entering clinical trials all the time. That means that most of the stastics you read about melanoma prognosis are OUT OF DATE. Survival and quality of life now is very different than it was 5 years ago. In terms of prognosis I, personally, don't pay much attention to anything written before 2010. And that goes for doctors, too. I have met several older, experienced doctors who can't seem to let go of the old, depressing statistics. Sometimes they can't let go of the old, ineffective treatments, either (like the doctor who wanted to do whole brain radiation for one tumor rather than the much less invasive Cyberknife treatment). 

        So stop reading the old literature and old web sites. Look at the webinars on the Melanoma International Foundation website for what's happening now in melanoma. And search for and read Charlie S's post Re: Stage IV..Roll Call for the Undead Please here on the MPIP forum. You and your wife have a LOT of reason to be optimistic!

      eric w
      Participant

      Hi….i'm circling back to my first question that i had asked…with multiple subcentimeter nodules (5) on both lungs what direction do you think they will direct us? I'm think Yervoy or the IL-2 but wanted to see if anyone was similar to my wifes situation and what they ended up doing. Also can someone direct me somewehere for some support for spouses as im up and down right now and really need to get upright..thanks

      eric w
      Participant

      Hi….i'm circling back to my first question that i had asked…with multiple subcentimeter nodules (5) on both lungs what direction do you think they will direct us? I'm think Yervoy or the IL-2 but wanted to see if anyone was similar to my wifes situation and what they ended up doing. Also can someone direct me somewehere for some support for spouses as im up and down right now and really need to get upright..thanks

        POW
        Participant

        I strongly appluad you for recognizing that you're going to need support. Good for you, Eric! One of the things I learned since my brother's diagnosis is that the stress doesn't come and go– it's pretty constant and even increases as you go through the process. If you're like me, when you stop worrying about medical  issues you start worrying about everything else in your life that you put off because of the medical issues. Eventually, I suppose, as your wife has several months of feeling well and having good scans you will be able to relax a little. But that's down the road a piece. And, frankly, I can't imagine how I would be able to maintain my patience with and enthusiasm toward 3 small children when I'm so busy with and worried about this medical crisis. So reaching out for help and support right now is very, very smart of you.

        There is another forum on this site called the "Off Topic Forum"; some people use tha for caregiver-related posts. The Melanoma International Foundation web site also has a forum called "For Caregivers". Frankly, neither of these two forums is particularly active, but when you do get responses, they tend to be very, very helpful and supportive.

        The best support I have gotten is from one or two good friends (only the closest–I don't want to overwhelm anyone else with my troubles) and from a grief counselor at my local hospice. She has a lot of experience with the financial, emotional, and interpersonal aspects of caregiving. She actually is a hospice employee but she accepts private clients, too. 

        POW
        Participant

        I strongly appluad you for recognizing that you're going to need support. Good for you, Eric! One of the things I learned since my brother's diagnosis is that the stress doesn't come and go– it's pretty constant and even increases as you go through the process. If you're like me, when you stop worrying about medical  issues you start worrying about everything else in your life that you put off because of the medical issues. Eventually, I suppose, as your wife has several months of feeling well and having good scans you will be able to relax a little. But that's down the road a piece. And, frankly, I can't imagine how I would be able to maintain my patience with and enthusiasm toward 3 small children when I'm so busy with and worried about this medical crisis. So reaching out for help and support right now is very, very smart of you.

        There is another forum on this site called the "Off Topic Forum"; some people use tha for caregiver-related posts. The Melanoma International Foundation web site also has a forum called "For Caregivers". Frankly, neither of these two forums is particularly active, but when you do get responses, they tend to be very, very helpful and supportive.

        The best support I have gotten is from one or two good friends (only the closest–I don't want to overwhelm anyone else with my troubles) and from a grief counselor at my local hospice. She has a lot of experience with the financial, emotional, and interpersonal aspects of caregiving. She actually is a hospice employee but she accepts private clients, too. 

        eric w
        Participant

        Thanks

        eric w
        Participant

        Thanks

        Genny
        Participant

        Hello Eric, 

        I was wondering how your wife is doing and what course of treatment she ended up choosing.

        My fiance, also named Eric, was diagnosed with Stage IIb melanoma last spring.  We were just informed last week that it has progressed to Stage IV and he has two melanoma spots in his right lung each around 1.2-1.3cm.  He had no positive lymph nodes when he had surgery to remove the initial lesion on his back in June.  

        He is trying to get in a clinical trial for antiPD-1.  His doctor believes this is the most promising.  Only 2/3 of the study participants get the PD-1, the other 1/3 gets Yervoy.  We won't know until the end which group he is in.  It is an 18 week trial.  We are praying he gets the PD-1.  

        Did her doctors explore surgery as an option?  I am guessing no, since I read she had spots in both lungs. My finace's doctor didn't seem to think surgery was a good option since he has more than one spot but they are both in the same lung so I sort of think we should get a second opinion on that.  

        I am anxious to hear how your wife is doing.  It sounds like a pretty similar diagnosis.  Eric is 34 and healthy in all other aspects. 

        Praying for good results for your wife.

        Genny

        Genny
        Participant

        Hello Eric, 

        I was wondering how your wife is doing and what course of treatment she ended up choosing.

        My fiance, also named Eric, was diagnosed with Stage IIb melanoma last spring.  We were just informed last week that it has progressed to Stage IV and he has two melanoma spots in his right lung each around 1.2-1.3cm.  He had no positive lymph nodes when he had surgery to remove the initial lesion on his back in June.  

        He is trying to get in a clinical trial for antiPD-1.  His doctor believes this is the most promising.  Only 2/3 of the study participants get the PD-1, the other 1/3 gets Yervoy.  We won't know until the end which group he is in.  It is an 18 week trial.  We are praying he gets the PD-1.  

        Did her doctors explore surgery as an option?  I am guessing no, since I read she had spots in both lungs. My finace's doctor didn't seem to think surgery was a good option since he has more than one spot but they are both in the same lung so I sort of think we should get a second opinion on that.  

        I am anxious to hear how your wife is doing.  It sounds like a pretty similar diagnosis.  Eric is 34 and healthy in all other aspects. 

        Praying for good results for your wife.

        Genny

        Genny
        Participant

        Hello Eric, 

        I was wondering how your wife is doing and what course of treatment she ended up choosing.

        My fiance, also named Eric, was diagnosed with Stage IIb melanoma last spring.  We were just informed last week that it has progressed to Stage IV and he has two melanoma spots in his right lung each around 1.2-1.3cm.  He had no positive lymph nodes when he had surgery to remove the initial lesion on his back in June.  

        He is trying to get in a clinical trial for antiPD-1.  His doctor believes this is the most promising.  Only 2/3 of the study participants get the PD-1, the other 1/3 gets Yervoy.  We won't know until the end which group he is in.  It is an 18 week trial.  We are praying he gets the PD-1.  

        Did her doctors explore surgery as an option?  I am guessing no, since I read she had spots in both lungs. My finace's doctor didn't seem to think surgery was a good option since he has more than one spot but they are both in the same lung so I sort of think we should get a second opinion on that.  

        I am anxious to hear how your wife is doing.  It sounds like a pretty similar diagnosis.  Eric is 34 and healthy in all other aspects. 

        Praying for good results for your wife.

        Genny

        eric w
        Participant

        Thanks

        POW
        Participant

        I strongly appluad you for recognizing that you're going to need support. Good for you, Eric! One of the things I learned since my brother's diagnosis is that the stress doesn't come and go– it's pretty constant and even increases as you go through the process. If you're like me, when you stop worrying about medical  issues you start worrying about everything else in your life that you put off because of the medical issues. Eventually, I suppose, as your wife has several months of feeling well and having good scans you will be able to relax a little. But that's down the road a piece. And, frankly, I can't imagine how I would be able to maintain my patience with and enthusiasm toward 3 small children when I'm so busy with and worried about this medical crisis. So reaching out for help and support right now is very, very smart of you.

        There is another forum on this site called the "Off Topic Forum"; some people use tha for caregiver-related posts. The Melanoma International Foundation web site also has a forum called "For Caregivers". Frankly, neither of these two forums is particularly active, but when you do get responses, they tend to be very, very helpful and supportive.

        The best support I have gotten is from one or two good friends (only the closest–I don't want to overwhelm anyone else with my troubles) and from a grief counselor at my local hospice. She has a lot of experience with the financial, emotional, and interpersonal aspects of caregiving. She actually is a hospice employee but she accepts private clients, too. 

        Ali
        Participant

        In my case we started with IL-2, because you know if your responding pretty quickly (you usually wait months to find out if the Yervoy is working).  Also it may be easier to go from IL-2 to Yervoy, than the other way around.  IL-2 has bad side effects, but they go away just days after treatment.  I am a little biased because IL-2 followed by Yervoy gave me great results.  ๐Ÿ™‚  Good luck with your appointments, let us know what you guys decide! 

        Ali
        Participant

        In my case we started with IL-2, because you know if your responding pretty quickly (you usually wait months to find out if the Yervoy is working).  Also it may be easier to go from IL-2 to Yervoy, than the other way around.  IL-2 has bad side effects, but they go away just days after treatment.  I am a little biased because IL-2 followed by Yervoy gave me great results.  ๐Ÿ™‚  Good luck with your appointments, let us know what you guys decide! 

        Ali
        Participant

        In my case we started with IL-2, because you know if your responding pretty quickly (you usually wait months to find out if the Yervoy is working).  Also it may be easier to go from IL-2 to Yervoy, than the other way around.  IL-2 has bad side effects, but they go away just days after treatment.  I am a little biased because IL-2 followed by Yervoy gave me great results.  ๐Ÿ™‚  Good luck with your appointments, let us know what you guys decide! 

      eric w
      Participant

      Hi….i'm circling back to my first question that i had asked…with multiple subcentimeter nodules (5) on both lungs what direction do you think they will direct us? I'm think Yervoy or the IL-2 but wanted to see if anyone was similar to my wifes situation and what they ended up doing. Also can someone direct me somewehere for some support for spouses as im up and down right now and really need to get upright..thanks

      steelergirl
      Participant

      Have the doctors said it is melanoma?  I have nodules in my lungs, and this year they are new, between 2-7 mm in size.  They are too small to be biopised.  My oncologist is not thinking mine are not from the melanoma.

      steelergirl
      Participant

      Have the doctors said it is melanoma?  I have nodules in my lungs, and this year they are new, between 2-7 mm in size.  They are too small to be biopised.  My oncologist is not thinking mine are not from the melanoma.

        eric w
        Participant

        Hi yes it is melanoma…wish it wasn't but it is what it is…need to fight this crap…best i can do is arm myself with knowledge for my wife who has to prepare herself in a diffferent way…good luck

        eric w
        Participant

        Hi yes it is melanoma…wish it wasn't but it is what it is…need to fight this crap…best i can do is arm myself with knowledge for my wife who has to prepare herself in a diffferent way…good luck

        eric w
        Participant

        oh..sorry..they found it to be melanoma by needle biopsy…

        eric w
        Participant

        oh..sorry..they found it to be melanoma by needle biopsy…

        eric w
        Participant

        oh..sorry..they found it to be melanoma by needle biopsy…

        steelergirl
        Participant

        Thank you. this is a great place for support.  I hope whatever you two choose to do, will do its job and with the least amount of side effects possible.

        steelergirl
        Participant

        Thank you. this is a great place for support.  I hope whatever you two choose to do, will do its job and with the least amount of side effects possible.

        steelergirl
        Participant

        Thank you. this is a great place for support.  I hope whatever you two choose to do, will do its job and with the least amount of side effects possible.

        eric w
        Participant

        Hi yes it is melanoma…wish it wasn't but it is what it is…need to fight this crap…best i can do is arm myself with knowledge for my wife who has to prepare herself in a diffferent way…good luck

      steelergirl
      Participant

      Have the doctors said it is melanoma?  I have nodules in my lungs, and this year they are new, between 2-7 mm in size.  They are too small to be biopised.  My oncologist is not thinking mine are not from the melanoma.

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byย MRF posting policies.

Popular Topics