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Needing Support – Devasted, Stage 4 looming

Forums General Melanoma Community Needing Support – Devasted, Stage 4 looming

  • Post
    Lisa13
    Participant

    I wrote yesterday about getting rejected from the ipi/placebo trial in Montreal because they found some suspicious, tiny nodules in my lungs. They're too small to clearly see what they are, but they definately seemed concerned it's melanoma (up to 20 small nodules). I just had a Petscan at the end of February, plus surgery and a lymph node dissection and had clear CT scans as well. 2 months later, I've got these nodules and I'm scared out of mind.

    I wrote yesterday about getting rejected from the ipi/placebo trial in Montreal because they found some suspicious, tiny nodules in my lungs. They're too small to clearly see what they are, but they definately seemed concerned it's melanoma (up to 20 small nodules). I just had a Petscan at the end of February, plus surgery and a lymph node dissection and had clear CT scans as well. 2 months later, I've got these nodules and I'm scared out of mind. It's kind of a blessing I got screened for this trial, otherwise I wouldn't have gone in for scans until the end of June!!  I'm hoping since it's early, we can start trying to treat this. 

    I have an 18 month old daughter, my husband and I just bought a home thinking melanoma wasn't coming back anytime soon and now I'm crushed. My oncologist suggested on the phone to wait a month to see if they grow, but I'll be telling him next week, I want treatment right away.  Why would I give this dreadlful disease a chance to invade my body??

    First of all, since these are very small right now, can systemic treatment possibly make them disappear? Can it also help to kill any other rogue cells that are floating around or keep it from coming anywhere else?  I'm going crazy and have to wait till Wednesday to get any answers. My oncologist mentioned IL-21 and I"m willing to do anything.  Please let the Stage 4 people come on here and tell me there is hope that I can keep this from spreading.  I want to believe that this is a mistake and this won't be melanoma and will all disappear.   I went from being hopeful to utter despair.

    Lisa

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  • Replies
      jimjoeb
      Participant

      Hi Lisa!

      I don't have the kind of answers that you are looking for but keep checking the site tonight. There are some very knowledgeable people out there.

      Here's another site that you may want to try:

      http://melanomaintl.org/

      Joslyn

      Ib Wannabe in Ottawa

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      jimjoeb
      Participant

      Hi Lisa!

      I don't have the kind of answers that you are looking for but keep checking the site tonight. There are some very knowledgeable people out there.

      Here's another site that you may want to try:

      http://melanomaintl.org/

      Joslyn

      Ib Wannabe in Ottawa

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      Carol Taylor
      Participant

      Hi Lisa,

      I'm 3b myself and my kids are older. I can only begin to imagine what you might be going through and I don't have the answers you're looking for either.  But, I do want to point out and lift up the hope that you, yourself have lifted up but seem to be reframing from hope to despair.

      OK. they're very small right now.  Your words. Very small. A big plus factor. You've got a ypung daughter, and you & your husband just bought a home on top of starting a family…every great reason to pull yourself together and be determined to do what you feel you need to do to beat this thing.  OK?  You got screened for the trial early so this was caught early!  Another big plus.

      And the way I read your questions, you're already formulating some plan of attack and you haven't seen your onc yet!  I love you, Lisa!  You've got more going for you than you're recognizing right now.

      And who knows? When you go back and they do further tests, you may be given news that's more positive. For now, push to get seen asap.

      Praying for you Friend.

      Lord, in Your mercy, open the doors for Lisa that need to be opened. Bring her peace. Amen

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      Carol Taylor
      Participant

      Hi Lisa,

      I'm 3b myself and my kids are older. I can only begin to imagine what you might be going through and I don't have the answers you're looking for either.  But, I do want to point out and lift up the hope that you, yourself have lifted up but seem to be reframing from hope to despair.

      OK. they're very small right now.  Your words. Very small. A big plus factor. You've got a ypung daughter, and you & your husband just bought a home on top of starting a family…every great reason to pull yourself together and be determined to do what you feel you need to do to beat this thing.  OK?  You got screened for the trial early so this was caught early!  Another big plus.

      And the way I read your questions, you're already formulating some plan of attack and you haven't seen your onc yet!  I love you, Lisa!  You've got more going for you than you're recognizing right now.

      And who knows? When you go back and they do further tests, you may be given news that's more positive. For now, push to get seen asap.

      Praying for you Friend.

      Lord, in Your mercy, open the doors for Lisa that need to be opened. Bring her peace. Amen

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      Roberta
      Participant

      Dear Lisa,

      I was completely freaked ten plus years ago when I was told that I had many tiny mets to my lungs.   It's been ten plus years with no change to these tiny mets and no further spread.  Ironically, one of my doctors, a kidney cancer survivor has the exact same occurance.  

      Live Like You've Got All Day.

       

      Roberta

       

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        Lisa13
        Participant

        Thank you all for your support – it truly means the world to me to know that in my dark moments, there are people here who care and help get my head in a more positive place.

        Joslyn – Even though you didn't have answers, your encouragement was so thoughtful.

        Carol – your words brought tears to my eyes and I thank you for turning my attention towards something more positive because I'm in such a bad headspace today.

        Roberta – you have no idea how hopeful you have made me. Knowing that there are other people who have faced the same fear I'm going through and have made it through unscathed, makes me more optimistic.  

        I really don't know what the outcome will be, but I can only pray that everything is going to be okay. If it isn't, then I just have to deal with what's given to me. 

        Lisa

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        Lisa13
        Participant

        Thank you all for your support – it truly means the world to me to know that in my dark moments, there are people here who care and help get my head in a more positive place.

        Joslyn – Even though you didn't have answers, your encouragement was so thoughtful.

        Carol – your words brought tears to my eyes and I thank you for turning my attention towards something more positive because I'm in such a bad headspace today.

        Roberta – you have no idea how hopeful you have made me. Knowing that there are other people who have faced the same fear I'm going through and have made it through unscathed, makes me more optimistic.  

        I really don't know what the outcome will be, but I can only pray that everything is going to be okay. If it isn't, then I just have to deal with what's given to me. 

        Lisa

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      Roberta
      Participant

      Dear Lisa,

      I was completely freaked ten plus years ago when I was told that I had many tiny mets to my lungs.   It's been ten plus years with no change to these tiny mets and no further spread.  Ironically, one of my doctors, a kidney cancer survivor has the exact same occurance.  

      Live Like You've Got All Day.

       

      Roberta

       

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      Charlie S
      Participant

      Take a deep breath, and then do that once more.

      If I may, I would like to speak with you from the perspective of a Stage IV Patient since 1996 , with active disease.and was first diagnosed in 1987 at Stage III.  That was 24 years ago.

      You are young and the prospect of your life being finite is understandably shocking and you are scared………..not unusual.

      You are now into your young marriage and young motherhood faced with the prospect of all of that being denied you because of some stupid disease and you want answers and solutions and  you want them now….not unusual.

      Well, you can't have all the answers you want right now because that is just not the way melanoma works.  That is not to say you cannot exercise control, diligence or intelligence in your approach to this disease, because you can.

      In that regard of you wanting "immediate treatment"……..that is not always a wise course without knowing what you are facing.  Yes, you may have lung mets, but then again, since you have not had a CT lung workup before, maybe you do not.

        Lots of people get funny looking things on scans and more often than not, they are not cancer related.

      One thing I know for sure is this disease can not, nor will not be conquered or controlled by motivation of fear, rather it will be by considered by intelligent approach and not knee jerk reactions to immediacy.

      Your lung thingies may be nothing, then again they may be something, but seperate, if you can, the need to do something now as opposed to a measured response..

      Your lung thingies may be nothing, do not assume, but in the back of your mind forumulate a plan if they are, but don't think right now they are the end all to be all.

       

      Cheers,

      Charlie S

       

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      Charlie S
      Participant

      Take a deep breath, and then do that once more.

      If I may, I would like to speak with you from the perspective of a Stage IV Patient since 1996 , with active disease.and was first diagnosed in 1987 at Stage III.  That was 24 years ago.

      You are young and the prospect of your life being finite is understandably shocking and you are scared………..not unusual.

      You are now into your young marriage and young motherhood faced with the prospect of all of that being denied you because of some stupid disease and you want answers and solutions and  you want them now….not unusual.

      Well, you can't have all the answers you want right now because that is just not the way melanoma works.  That is not to say you cannot exercise control, diligence or intelligence in your approach to this disease, because you can.

      In that regard of you wanting "immediate treatment"……..that is not always a wise course without knowing what you are facing.  Yes, you may have lung mets, but then again, since you have not had a CT lung workup before, maybe you do not.

        Lots of people get funny looking things on scans and more often than not, they are not cancer related.

      One thing I know for sure is this disease can not, nor will not be conquered or controlled by motivation of fear, rather it will be by considered by intelligent approach and not knee jerk reactions to immediacy.

      Your lung thingies may be nothing, then again they may be something, but seperate, if you can, the need to do something now as opposed to a measured response..

      Your lung thingies may be nothing, do not assume, but in the back of your mind forumulate a plan if they are, but don't think right now they are the end all to be all.

       

      Cheers,

      Charlie S

       

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      FormerCaregiver
      Participant

      Your oncologist will have to find out what the nodules in your lungs are before we can help you
      to decide what to do next. Without this knowledge, we are really just "flying blind" as we are
      not absolutely certain what you are attempting to fight. They may or may not be malignant, but
      even if they are there are many things that can be done.

      You mentioned IL-21. Are you talking about the following clinical trial?
      http://www.clinicaltrials.gov/ct2/show/NCT01152788?term=IL-21+canada&rank=1

      You ask some excellent questions, and I will answer them when we know what your nodules are. At
      the moment, I can't add much to what the others have said in their excellent replies. If you feel
      that you have any immediate concerns don't hesitate to post at any time day or night. It is
      about 4pm on Saturday afternoon here, and I am quite likely to see many of the posts that appear
      in the early morning your time.

      So, please don't lose hope. We are here to help you.

      Frank from Australia

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      FormerCaregiver
      Participant

      Your oncologist will have to find out what the nodules in your lungs are before we can help you
      to decide what to do next. Without this knowledge, we are really just "flying blind" as we are
      not absolutely certain what you are attempting to fight. They may or may not be malignant, but
      even if they are there are many things that can be done.

      You mentioned IL-21. Are you talking about the following clinical trial?
      http://www.clinicaltrials.gov/ct2/show/NCT01152788?term=IL-21+canada&rank=1

      You ask some excellent questions, and I will answer them when we know what your nodules are. At
      the moment, I can't add much to what the others have said in their excellent replies. If you feel
      that you have any immediate concerns don't hesitate to post at any time day or night. It is
      about 4pm on Saturday afternoon here, and I am quite likely to see many of the posts that appear
      in the early morning your time.

      So, please don't lose hope. We are here to help you.

      Frank from Australia

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      Dynasysman
      Participant
      Lisa,

      One problem with modern medicine is that we see so many things we cannot describe yet. During my first round of scans last November, they found an aneurysm (confirmed false alarm), a suspected positive lymph node left posterior neck (in addition to the first positive node), and suspicious lung activity (now believed to be scar tissue). Needless to say, I was totally freaked.

      Six months later, we have ruled out the neck and lung, and have seen no further growth in the lymph node. My ONC says I should consider myself NED until proven otherwise.

      Stay assertive, stay informed, stay cool. You sound like an empowered, optimistic person. Don’t lose that!

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      Dynasysman
      Participant
      Lisa,

      One problem with modern medicine is that we see so many things we cannot describe yet. During my first round of scans last November, they found an aneurysm (confirmed false alarm), a suspected positive lymph node left posterior neck (in addition to the first positive node), and suspicious lung activity (now believed to be scar tissue). Needless to say, I was totally freaked.

      Six months later, we have ruled out the neck and lung, and have seen no further growth in the lymph node. My ONC says I should consider myself NED until proven otherwise.

      Stay assertive, stay informed, stay cool. You sound like an empowered, optimistic person. Don’t lose that!

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      dian in spokane
      Participant

      Lisa,

       

      I see you've gotten some good responses. I just want to add that during my years here, I've seen many many people who have had 'lung nodules' that never changed. It's the MOST common suspicious thing to turn up on scans.

      People get lung boogers for lots of reasons. Just breathing and aging can cause them. So..they are not necessarily melanoma, no matter what your doctors think.

      When I was on interferon, back in 2004.. my lungs looked so bad that they were sure I had progressed. But then I went OFF interferon, and the nodules mostly cleared up, but never have completely and always show up. I can't tell you how many bronchoscopys and scans I've had over them.

       

      Again, a year ago January, I had a PET/CT and the radiologist actually sent the report to my doc saying I had 'multiple metastatic lesions in my lungs' and bilateral melanoma spread to the lymph nodes in my neck, when in actuality, what I had was the Flu.

      You have to KNOW for sure that it is melanoma in your lungs before you go treating it. I doubt your docs will just start pumping you full of IL2 without knowing that first. That means watching and waiting, which can be tortuous, and/or doing diagnostic tests to confirm..like biopsies, but it sounds like these things are too small for a biopsy.

      They might stay the same size for a long time, so it can be pretty nervewracking to have to wait, but it's likely your best course at this point.

      Good luck! don't lose heart!

      dian in spokane

      wrestling with melanoma since 1983

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        Lisa13
        Participant

        I think the one scary thing about waiting a month to re-scan is the possibility that this could multiply somewhere else rapidly. If these small bunch of nodules in my lungs are melanoma which have shown up so soon after surgery, then I'm very worried.  I know it's possible this may not be something or may not manifest into anything serious, but I also know that melanoma is very unpredictable.

        All I can do it wait and try and get more answers on Wednesday.  My immune system played a big role in keeping this melanoma from spreading to more than 1 lymph node. I had a giant egg size lump in my groin which after being biopsied was negative for melanoma, My surgical oncologist said it was my own immune system doing it's job. I honestly thought I wouldn't be dealing with another "episode", or "scare" so quickly.

        Lisa

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        Carol Taylor
        Participant

        Lisa,

        I wanted to do this off board and email you privately but you seem to have a way to do that with your profile info.  I really didin't intend to turn this into a shameless plug for the Melanoma Prayer Center, but I do want to sggest that you drop by, you may be pleasantly surprised and find something (or a lot) helpful. There are several pages of posts and don't forget to vhevk out the several pages of "notes."

        It is technically a Facebook page but you don't have to be on FB to click on the link and read & play anything there and I take requests of all kind.

        Hang on to hope!  Praying for you, Friend and hope you're better today.

        Grace and peace,

        Carol

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        boot2aboot
        Participant

        Ah Geez LIsa, what can i say? except i FEEL your pain…here is hoping it is a false alarm, secondly i want to give you something that might cause you to hope…. my doctor cousin told me that melanoma can come and it can go-all by itself…he told me a story when he was interning at NYC -this was back in the 1970's-about a woman with melanoma tumors all over her body-covered in them, they had stopped all treatment and gave her a few weeks to live…clearly she was a 'goner'…but a funny thing happened… she told the docs she wasn't going to die, wasn't going to leave her kids….My cousin went back to NYC recently. visited his intern pals, and one of them said, "remember that melanoma patient we all feared, the one covered in tumors? she's still living and completely free of melanoma..she's like eighty years old now." i am not trying to give you false hope, but it is a true story and take it for whatever this is worth to you….

        boots

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        boot2aboot
        Participant

        Ah Geez LIsa, what can i say? except i FEEL your pain…here is hoping it is a false alarm, secondly i want to give you something that might cause you to hope…. my doctor cousin told me that melanoma can come and it can go-all by itself…he told me a story when he was interning at NYC -this was back in the 1970's-about a woman with melanoma tumors all over her body-covered in them, they had stopped all treatment and gave her a few weeks to live…clearly she was a 'goner'…but a funny thing happened… she told the docs she wasn't going to die, wasn't going to leave her kids….My cousin went back to NYC recently. visited his intern pals, and one of them said, "remember that melanoma patient we all feared, the one covered in tumors? she's still living and completely free of melanoma..she's like eighty years old now." i am not trying to give you false hope, but it is a true story and take it for whatever this is worth to you….

        boots

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        Carol Taylor
        Participant

        Lisa,

        I wanted to do this off board and email you privately but you seem to have a way to do that with your profile info.  I really didin't intend to turn this into a shameless plug for the Melanoma Prayer Center, but I do want to sggest that you drop by, you may be pleasantly surprised and find something (or a lot) helpful. There are several pages of posts and don't forget to vhevk out the several pages of "notes."

        It is technically a Facebook page but you don't have to be on FB to click on the link and read & play anything there and I take requests of all kind.

        Hang on to hope!  Praying for you, Friend and hope you're better today.

        Grace and peace,

        Carol

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        FormerCaregiver
        Participant

        Almost everyone in this forum has experienced the concerns that you raise. They may be a melanoma
        warrior themselves, or they may be looking after their loved one who has been given the diagnosis
        that we all fear.

        It is only natural to want to remove anything suspicious with the fear that it could be
        malignant. However, melanoma is different from other skin cancers and oncologists are cautious
        about telling people to have surgery without knowingly all the possible facts.

        In some people, melanoma has been known to be highly responsive to the efforts of the immune
        system. This is why specific immunological therapies such as vaccines are being developed.

        Although very rare, there have been cases where the disease has been defeated without any
        treatment. Here is the link to a previous post:
        http://www.melanoma.org/community/mpip-melanoma-patients-information-page/confused-stage-4-treatment-options#comment-12913

        A few years ago, a wise oncologist told me that doctors know very little about melanoma, and I
        feel that is still true today. However, people continue to defy the odds. In case you haven't
        done so already, you may like to read this amazing story (I wrote a post about this recently):
        http://wgalinat.blogspot.com/

        One thing that I am confident about is that long-term stress will make things worse as it causes
        harmful changes to one's immune system. I know that this is easier said than done, but try to put
        your worries into the background for a little while. However, don't forget that if anything
        really worries you please don't hesitate to post your concerns here.

        Hope this helps.

        Frank from Australia

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        FormerCaregiver
        Participant

        Almost everyone in this forum has experienced the concerns that you raise. They may be a melanoma
        warrior themselves, or they may be looking after their loved one who has been given the diagnosis
        that we all fear.

        It is only natural to want to remove anything suspicious with the fear that it could be
        malignant. However, melanoma is different from other skin cancers and oncologists are cautious
        about telling people to have surgery without knowingly all the possible facts.

        In some people, melanoma has been known to be highly responsive to the efforts of the immune
        system. This is why specific immunological therapies such as vaccines are being developed.

        Although very rare, there have been cases where the disease has been defeated without any
        treatment. Here is the link to a previous post:
        http://www.melanoma.org/community/mpip-melanoma-patients-information-page/confused-stage-4-treatment-options#comment-12913

        A few years ago, a wise oncologist told me that doctors know very little about melanoma, and I
        feel that is still true today. However, people continue to defy the odds. In case you haven't
        done so already, you may like to read this amazing story (I wrote a post about this recently):
        http://wgalinat.blogspot.com/

        One thing that I am confident about is that long-term stress will make things worse as it causes
        harmful changes to one's immune system. I know that this is easier said than done, but try to put
        your worries into the background for a little while. However, don't forget that if anything
        really worries you please don't hesitate to post your concerns here.

        Hope this helps.

        Frank from Australia

        Loading spinner
        Lisa13
        Participant

        I think the one scary thing about waiting a month to re-scan is the possibility that this could multiply somewhere else rapidly. If these small bunch of nodules in my lungs are melanoma which have shown up so soon after surgery, then I'm very worried.  I know it's possible this may not be something or may not manifest into anything serious, but I also know that melanoma is very unpredictable.

        All I can do it wait and try and get more answers on Wednesday.  My immune system played a big role in keeping this melanoma from spreading to more than 1 lymph node. I had a giant egg size lump in my groin which after being biopsied was negative for melanoma, My surgical oncologist said it was my own immune system doing it's job. I honestly thought I wouldn't be dealing with another "episode", or "scare" so quickly.

        Lisa

        Loading spinner
      dian in spokane
      Participant

      Lisa,

       

      I see you've gotten some good responses. I just want to add that during my years here, I've seen many many people who have had 'lung nodules' that never changed. It's the MOST common suspicious thing to turn up on scans.

      People get lung boogers for lots of reasons. Just breathing and aging can cause them. So..they are not necessarily melanoma, no matter what your doctors think.

      When I was on interferon, back in 2004.. my lungs looked so bad that they were sure I had progressed. But then I went OFF interferon, and the nodules mostly cleared up, but never have completely and always show up. I can't tell you how many bronchoscopys and scans I've had over them.

       

      Again, a year ago January, I had a PET/CT and the radiologist actually sent the report to my doc saying I had 'multiple metastatic lesions in my lungs' and bilateral melanoma spread to the lymph nodes in my neck, when in actuality, what I had was the Flu.

      You have to KNOW for sure that it is melanoma in your lungs before you go treating it. I doubt your docs will just start pumping you full of IL2 without knowing that first. That means watching and waiting, which can be tortuous, and/or doing diagnostic tests to confirm..like biopsies, but it sounds like these things are too small for a biopsy.

      They might stay the same size for a long time, so it can be pretty nervewracking to have to wait, but it's likely your best course at this point.

      Good luck! don't lose heart!

      dian in spokane

      wrestling with melanoma since 1983

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      lhaley
      Participant

      Lisa,

      I've been stage IV since 06. I've had several false alarms like others have mentioned. Right now they are watching 2 lung nodules that are too small to biopsy so there is no way to treat.  I've had several scans over the last 4.5 years and when looking back they can now see they they had appeared as a speck Dec. of 09, and have grown to 5mm and the other is 7mm. My last scan showed no growth and I'm considered Stable.  My next scan is Tuesday.  Meanwhile I had a scan for gall bladder issues at a local hospital. I gave them my last scan from my mel specialist so they could compare but they didn't.  The report read that there was a 6.5 mm nodule that was noted but there was nothing to compare it to (I have to admit I was super angry because they did have something to compare). I have since mailed my onc a copy of the local CT scan.  But, my point is that the local hospital did not jump to saying that it was malignant because it is too small to know.  My mel specialist at my last scan was estatic because there was no growth. No one knows and so at this point it's been 5 months.

      While I'm much older than you and I understand the stress with your young family I want you to know that just 10 months ago we moved 5 hours away and bought an old house that we are remodeling, all while being stage IV.  You can't let this stop you from living your life!!!   It is scary, take deep breaths and enjoy your baby this month while you wait. A Dr. will not treat you until they biopsy the nodules.  You don't every want to be treated for the wrong thing.

      Let us know,

      Linda

      Dealing with mel since 1979, stage IV since 06

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      lhaley
      Participant

      Lisa,

      I've been stage IV since 06. I've had several false alarms like others have mentioned. Right now they are watching 2 lung nodules that are too small to biopsy so there is no way to treat.  I've had several scans over the last 4.5 years and when looking back they can now see they they had appeared as a speck Dec. of 09, and have grown to 5mm and the other is 7mm. My last scan showed no growth and I'm considered Stable.  My next scan is Tuesday.  Meanwhile I had a scan for gall bladder issues at a local hospital. I gave them my last scan from my mel specialist so they could compare but they didn't.  The report read that there was a 6.5 mm nodule that was noted but there was nothing to compare it to (I have to admit I was super angry because they did have something to compare). I have since mailed my onc a copy of the local CT scan.  But, my point is that the local hospital did not jump to saying that it was malignant because it is too small to know.  My mel specialist at my last scan was estatic because there was no growth. No one knows and so at this point it's been 5 months.

      While I'm much older than you and I understand the stress with your young family I want you to know that just 10 months ago we moved 5 hours away and bought an old house that we are remodeling, all while being stage IV.  You can't let this stop you from living your life!!!   It is scary, take deep breaths and enjoy your baby this month while you wait. A Dr. will not treat you until they biopsy the nodules.  You don't every want to be treated for the wrong thing.

      Let us know,

      Linda

      Dealing with mel since 1979, stage IV since 06

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      TimJ
      Participant

      Hello Lisa,

      My husband was diagnosed with melanoma last year at this time. During his pre-surgical physical they did a chest x-ray, the x-ray showed multiple spots in his lungs. He had a PET scan to rule out melanoma, blood tests to rule out fungus, etc. and after those came back negative or not suggestive of melanoma he had a broncoscopy which showed pneumonia and granulomas but no melanoma cells. They proceeded with the WLE/SNB after the pneumonia was treated. He has since had follow-up chest x-rays and CT scans to monitor the nodules which have remained small and stable. He is followed by an oncologist at Mayo and a pulmonologist at the U of MN. They believe the nodules are sarcoidosis, however they do not know if the sarcoidosis came before the melanoma or the melanoma caused the sarcoidosis. It was a scary 4 weeks while they were busy ruling out lungs mets and treating the pneumonia while the melanoma remained in his arm (due to a shave biopsy which was not deep enough). Hoping your nodules are a coincidental finding and not mets.

      Michelle

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      TimJ
      Participant

      Hello Lisa,

      My husband was diagnosed with melanoma last year at this time. During his pre-surgical physical they did a chest x-ray, the x-ray showed multiple spots in his lungs. He had a PET scan to rule out melanoma, blood tests to rule out fungus, etc. and after those came back negative or not suggestive of melanoma he had a broncoscopy which showed pneumonia and granulomas but no melanoma cells. They proceeded with the WLE/SNB after the pneumonia was treated. He has since had follow-up chest x-rays and CT scans to monitor the nodules which have remained small and stable. He is followed by an oncologist at Mayo and a pulmonologist at the U of MN. They believe the nodules are sarcoidosis, however they do not know if the sarcoidosis came before the melanoma or the melanoma caused the sarcoidosis. It was a scary 4 weeks while they were busy ruling out lungs mets and treating the pneumonia while the melanoma remained in his arm (due to a shave biopsy which was not deep enough). Hoping your nodules are a coincidental finding and not mets.

      Michelle

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      rainsberger.tony
      Participant

      Lisa,

      I am sorry to hear about your lung nodules and subsquent trial rejection.  My wife has been thriving with melanoma for the past 7 years and for the past 3 years in stage IV.  I use the word thriving because she would as well.  We have had many moments of fear and shed our share of tears, as well.  This past fall she really had her back against the wall with a large tumor in her lungs constricting the blood flow in her superior vena cava.  In December we again shed tears, this time with her oncologist as she told my wife she was NED.  Three scans later she continues to be NED and stays focused on the daily joy of living. I doubt that many melanoma specialists would have expected her to be alive today let alone be NED.  I will be posting her treatment history (under the title of "Sharing hope/joy") on MPIP later today, but honestly it is not a "proven" path.  It seems like there are many melanoma successes that research doesn't validate.  I am certain that "miracles" happen in our world every day and you are worthy of one!  There is hope!

      Tony.

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      rainsberger.tony
      Participant

      Lisa,

      I am sorry to hear about your lung nodules and subsquent trial rejection.  My wife has been thriving with melanoma for the past 7 years and for the past 3 years in stage IV.  I use the word thriving because she would as well.  We have had many moments of fear and shed our share of tears, as well.  This past fall she really had her back against the wall with a large tumor in her lungs constricting the blood flow in her superior vena cava.  In December we again shed tears, this time with her oncologist as she told my wife she was NED.  Three scans later she continues to be NED and stays focused on the daily joy of living. I doubt that many melanoma specialists would have expected her to be alive today let alone be NED.  I will be posting her treatment history (under the title of "Sharing hope/joy") on MPIP later today, but honestly it is not a "proven" path.  It seems like there are many melanoma successes that research doesn't validate.  I am certain that "miracles" happen in our world every day and you are worthy of one!  There is hope!

      Tony.

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      ValinMtl
      Participant

      Hi Lisa

      As some are saying…sometimes these nodules are just that suspicious…right now it's wait and see.  You know I was offered the placebo/ipi trial in 2008 when I was stage III.  I said 'no'…why because, if you are on that trial you just might not be eligible for another ipilimumab trial…I figured with my odds..I would end up on the placebo side.  So I took interferon…yes, melanoma came back but now I am on the compassionate ipi trial and I know I am getting the ipi and not some placebo……I preferred this believe me.  I always recall the difficulty that dear Will and Lori, his caregiver had, when he was on what they believe to be the placebo arm.   Are you being treated at Princess Margaret Hospital…keep in contact with Annette Cyr of the Melanoma Network of Canada…she is a big help.   Val xx

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      ValinMtl
      Participant

      Hi Lisa

      As some are saying…sometimes these nodules are just that suspicious…right now it's wait and see.  You know I was offered the placebo/ipi trial in 2008 when I was stage III.  I said 'no'…why because, if you are on that trial you just might not be eligible for another ipilimumab trial…I figured with my odds..I would end up on the placebo side.  So I took interferon…yes, melanoma came back but now I am on the compassionate ipi trial and I know I am getting the ipi and not some placebo……I preferred this believe me.  I always recall the difficulty that dear Will and Lori, his caregiver had, when he was on what they believe to be the placebo arm.   Are you being treated at Princess Margaret Hospital…keep in contact with Annette Cyr of the Melanoma Network of Canada…she is a big help.   Val xx

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        Lisa13
        Participant

        The support on this site is incredible and I thank all of you for making me feel a little better about things.  It's very hard not to worry yourself sick when it comes to suspicious scans, but right now, until my follow up scan in 2.5 weeks, I'm enjoying life and remaining hopeful.  Why worry until there is reason to worry – it just makes me weak and I need to be strong.

        I'm really hoping that it's nothing and that the nodules don't grow. If they've changed, then I know I have lots of options for treatment. Nobody wants to be Stage 4 of any cancer, but I have learned that it's possible to remain stable or NED for years with this disease.  There are many people here who are proof of that and I continue to believe that all is not lost.

        Keep the faith everyone,

        Lisa

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        Lisa13
        Participant

        The support on this site is incredible and I thank all of you for making me feel a little better about things.  It's very hard not to worry yourself sick when it comes to suspicious scans, but right now, until my follow up scan in 2.5 weeks, I'm enjoying life and remaining hopeful.  Why worry until there is reason to worry – it just makes me weak and I need to be strong.

        I'm really hoping that it's nothing and that the nodules don't grow. If they've changed, then I know I have lots of options for treatment. Nobody wants to be Stage 4 of any cancer, but I have learned that it's possible to remain stable or NED for years with this disease.  There are many people here who are proof of that and I continue to believe that all is not lost.

        Keep the faith everyone,

        Lisa

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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.

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