Metastatic Melanoma

Sleepyhead
Sleepyhead Member Posts: 3
edited August 2013 in Head and Neck Cancer #1

Just found out that my cancer has spread to my lungs.  It's very early and very small.  10mm x 7 mm.  I thought it was all over.  I have been cancer free for four years.  It started on top of my head.  Very small, very shallow.  Dr said "nothing to worry about."  Two years later it was very small and about two inches over.  This time in my lymph system.  Dr said aggressive surgery will take care of it.  I asked "what about the sentinel node."  Nothing to worry about we will radiate that area.  Radiation Doctor said "no need to radiate, it's too small."

Two years later,  it was on the side of my face.  Temple area.  They removed 15 lymph nodes (9 cancerous). Found another cancerous lymph behind right ear.  Removed 15 nodes only one malignant.  Radiation and treatment with interferon (14000 units 3 times per week for two weeks) and then interlueken (18000 units two times per week for one week) Alternate for 6 months.  At the end of my 6 months treatment They removed another malignant melanoma on my chest, evidently meds didn't work, ( told me not to worry) it was not connected to the others.

I don't understand what God is doing in all this.  But I'm still trusting Him.  The radiation department speaks of several other calcified areas in lungs and liver and spleen.  Who knows what is next.  I go back to the Doctor at the end of October.  Perhaps they will operate. 

 

Just waiting

Sleepyhead

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Sleepyhead

    Sorry to hear of the journey.  Have all of your malignancies been melanoma?  And did they biopsy the lung lesion to know it  was malignant?  I hadn't realized until now there isn't a special  category for you folks with melanoma on CSN.  That's too bad, because it is common, and you folks have special situations.  Anyway, welcome to the board.  You will meet a bunch of nice people here.  Please feel free to post.

     

    Pat

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
    Welcome

    Sleephead,

    Welcome to the H&N forum, so sorry for your journey here.

    As you have found out, cancer can be elusive and unpredictable.  I think the doctors are often surprised at the turn of events.  It sounds like your team has been chasing your intruder and hopefully will be able to stamp it out. 

    You aren’t being picked on, it is just the way this messy stuff happens.  I thought when I made it to past 50 I would be in the clear for cancer, oh how wrong I was.

    I will stay positive for your successful treatment.

    Matt

  • Sleepyhead
    Sleepyhead Member Posts: 3
    #4
    longtermsurvivor said:

    Hi Sleepyhead

    Sorry to hear of the journey.  Have all of your malignancies been melanoma?  And did they biopsy the lung lesion to know it  was malignant?  I hadn't realized until now there isn't a special  category for you folks with melanoma on CSN.  That's too bad, because it is common, and you folks have special situations.  Anyway, welcome to the board.  You will meet a bunch of nice people here.  Please feel free to post.

     

    Pat

    Pat,
    Thank you for your nice

    Pat,

    Thank you for your nice welcome.  No they haven't yet biopsied the lession.  They want it to get bigger first.  It is very close to my heart and inside the lung.  The radiologist called it "worrisome for metastatic disease.  God is not finished yet.  Thanks for your welcome.

    Jerry

  • Sleepyhead
    Sleepyhead Member Posts: 3
    #5
    CivilMatt said:

    Welcome

    Sleephead,

    Welcome to the H&N forum, so sorry for your journey here.

    As you have found out, cancer can be elusive and unpredictable.  I think the doctors are often surprised at the turn of events.  It sounds like your team has been chasing your intruder and hopefully will be able to stamp it out. 

    You aren’t being picked on, it is just the way this messy stuff happens.  I thought when I made it to past 50 I would be in the clear for cancer, oh how wrong I was.

    I will stay positive for your successful treatment.

    Matt

    Matt,
    It is intriging how

    Matt,

    It is intriging how this stuff travels.  I pray that yours is repairable.  Positive is the only way to go.

    Jerry

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Sleepyhead said:

    Pat,
    Thank you for your nice

    Pat,

    Thank you for your nice welcome.  No they haven't yet biopsied the lession.  They want it to get bigger first.  It is very close to my heart and inside the lung.  The radiologist called it "worrisome for metastatic disease.  God is not finished yet.  Thanks for your welcome.

    Jerry

    Jerry

    One thing many of us can tell you is that this lung thing isn't carved in stone.  I had a lung lesion followed for several years.  It never became a problem, and they eventually decided it was benign and stopped worrying about it.  Others have had that same experience.  We have also had several participants who had a second primary, a different cancer arising in the lung, that proved to be very treatable.  Then of course there are others who really do have metastatic disease.  Its the curse of the illness, having to wait and watch.  In the meantime, we live our lives....

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #7
    Welcome to

    the H&N group, but so sorry you have to be here!  There are some of the kindest people you'll ever "meet" in this group.  I pray that God will bring you peace and healing.  Please keep us all posted.  

  • donfoo
    donfoo Member Posts: 1,771 Member
    #8
    longtermsurvivor said:

    Jerry

    One thing many of us can tell you is that this lung thing isn't carved in stone.  I had a lung lesion followed for several years.  It never became a problem, and they eventually decided it was benign and stopped worrying about it.  Others have had that same experience.  We have also had several participants who had a second primary, a different cancer arising in the lung, that proved to be very treatable.  Then of course there are others who really do have metastatic disease.  Its the curse of the illness, having to wait and watch.  In the meantime, we live our lives....

    going OT a bit

    We have also had several participants who had a second primary, a different cancer arising in the lung, that proved to be very treatable.  Then of course there are others who really do have metastatic disease.

    Please help clear some confusion on HNC patients and lung cancer. If one contracts lung cancer as a new primary, then it is treatable and curable? If it is metastatic from a HNC primary then it is generally pallative treatment? Thanks don

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #9
    Cancer Spread

    Over the years my husband had several spots of squamous cell cancer taken off his face and we were told no problems.  Well 3 years ago he was diagnosed with laryngeal cancer, Stage 3 due to size of tumor but no spread and it was squamous.  I asked could this have been from what he had taken off his face over the years, was told no.  But that's not true.  Later learned if it gets in your blood stream it can spread.  Fast forward to April 2012 when he was having a procedure for a TEP.  The H&N specialist found a tumor at the cervical of his esophagus, said it was a second primary but again SCC.  Due to previous radiation, surgery, his age and the horrible surgery this would entail, another round of radiation and chemo only thng offered.  Once again small and no spread.  For 4 months he was NED and then when he had a PET/CT scan in February 2013, it show that the nodules they were watching in his right lung were growing and that the tumor had reoccurred at the cervical of his esophagus large this time.  The H&N specialist pushed for the biopsy of the nodules in his lung even though they were very small and at first they just wanted to watch them, but the specialist pushed and a needle biopsy was done.  Of course,  cancer.  Due to spread, surgery was ruled out and only chemo was offered.  My husband declined all further treatment.

    Today he is about the same as in February though I see the changes, energy levels low, depression which being a man won't admit, pain level stays about a 6-7 he says but I see the pain in his face when he doesn't think I'm watching.  And yes cancer is a beast and strikes anyone, infant, young, middle age, old, good/bad,  it doesn't discriminate.

    Wishing you peace and comfort -- Sharon

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    donfoo said:

    going OT a bit

    We have also had several participants who had a second primary, a different cancer arising in the lung, that proved to be very treatable.  Then of course there are others who really do have metastatic disease.

    Please help clear some confusion on HNC patients and lung cancer. If one contracts lung cancer as a new primary, then it is treatable and curable? If it is metastatic from a HNC primary then it is generally pallative treatment? Thanks don

    you're understanding is correct

    A good case in point is the story of soccerfreaks.  If you have a few hours you should read his blog.  Not only educational, but entertaining as well.  He only posts here once in a blue moon.  But he had both primaries, ENT and lung, surviving both of them.  And I believe Denistd is the same situation.

     

     

     

    Pat

  • donfoo
    donfoo Member Posts: 1,771 Member
    #11
    longtermsurvivor said:

    you're understanding is correct

    A good case in point is the story of soccerfreaks.  If you have a few hours you should read his blog.  Not only educational, but entertaining as well.  He only posts here once in a blue moon.  But he had both primaries, ENT and lung, surviving both of them.  And I believe Denistd is the same situation.

     

     

     

    Pat

    Help finding blog

    Hi Pat,

     

    I searched for soccerfreaks here
    did not find any hits on this forum. Do you have any more specific link to his blog?

    One other related question - If one has been diagnosed with cancer such as HNC, does that person have a higher statistical change of being dianosed with a cancer of a different etiology?

    Thanks Don

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    donfoo said:

    Help finding blog

    Hi Pat,

     

    I searched for soccerfreaks here
    did not find any hits on this forum. Do you have any more specific link to his blog?

    One other related question - If one has been diagnosed with cancer such as HNC, does that person have a higher statistical change of being dianosed with a cancer of a different etiology?

    Thanks Don

    on finding soccerfreaks

    You know, this came up a few months  ago.  His blog may have gone down when he site updated.  I know someone had trouble finding him a while back, but my belief is they finally did.     Skiffin may actually have his contact. 

     

    Your question about increased incidence is difficult.     HPV 16 causes genital and oral cancers, as you know, so the commonality of cause would suggest an increase for that reason alone.  Smoking is a known cause of lung, bladder and oral cancer, as well as being impicated as a causal factor in several others, so that would have to militate for an increase as well.  Then there is radiation.  Radiation  can cause sarcomas, but these are rare enough to probably not worry about.  Maybe better not to dwell on these things too much:)

  • donfoo
    donfoo Member Posts: 1,771 Member
    #13
    donfoo said:

    Help finding blog

    Hi Pat,

     

    I searched for soccerfreaks here
    did not find any hits on this forum. Do you have any more specific link to his blog?

    One other related question - If one has been diagnosed with cancer such as HNC, does that person have a higher statistical change of being dianosed with a cancer of a different etiology?

    Thanks Don

    Here it is

    I had used the CSN search and go Zero hits, no surprise. As JG suggested Google found it, no surprise. Here is the link to soccerfreaks blog:

    http://csn.cancer.org/blog/72176

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    SoccerFreaks ~ Joe
    Joe was booted here a year or so ago (temporarily) when having a tiff with a fellow CSN member on a different forum.

    If I remember it was just for a few weeks cooling off period. But Joe saw it as an opportunity to pursue other avenues and decided to stay off.

    He does still frequent an post on the CSN FaceBook pages, just saw him post something within the last few days actually...

    If you do a Google search soccerfreaks CSN you can see a few of his older posts here.

    He looks to be active still on What's Next, another ACS survivor support forum.

    Here's a link to his profile on What's Next, with some fairly recent posts, on both H&N and Lung;

    SoccerFreaks

    Here's the link to his blog, provided by DonFoo;

    SoccerFreaks (Joe) ~ BLOG

    Best,
    John
  • LynnLuc
    LynnLuc Member Posts: 22
    #15
    MM

    It may be presumptuous, but are you going to a comprehensive cancer center with melanoma specialists? I had a thoracotomy to remove melanoma in my paratracheal lympn node albeit it was 6.8 cent. at its widest area. I was told by the NIH , Mayo in MN and my onc in Florida that I had a 99% chance it would be back if I didn't do some other treatment. I opted for Anti PD-1 In Tampa at Moffitt Cancer Center. I have been Stage 4 for 4 years and have been NED for nearly 3 1/2.

    Have you gone for a second opinion?

    Best of wishes, Lynn

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    LynnLuc said:

    MM

    It may be presumptuous, but are you going to a comprehensive cancer center with melanoma specialists? I had a thoracotomy to remove melanoma in my paratracheal lympn node albeit it was 6.8 cent. at its widest area. I was told by the NIH , Mayo in MN and my onc in Florida that I had a 99% chance it would be back if I didn't do some other treatment. I opted for Anti PD-1 In Tampa at Moffitt Cancer Center. I have been Stage 4 for 4 years and have been NED for nearly 3 1/2.

    Have you gone for a second opinion?

    Best of wishes, Lynn

    Moffitt

    A great facility....

    I'm in Lakeland and my center ~ Center for Cancer Care & Research - Watson Clininc, is also affilliated with Moffitt....

    Congrats on your successes...

    John

  • hwt
    hwt Member Posts: 2,328 Member
    #17
    Skiffin16 said:

    Moffitt

    A great facility....

    I'm in Lakeland and my center ~ Center for Cancer Care & Research - Watson Clininc, is also affilliated with Moffitt....

    Congrats on your successes...

    John

    Sorry to hear

    I will say that my cousin had melonoma spread to lungs and liver 8 years ago. At that time Interluken II was a trial. He has been NED for 8 years. Then just 3 years ago, my brother was told that he had kidney cancer which was stage 4 as moved to lungs only to learn at Mayo that it was two stage 1 primary cancers. He has been NED 3 years now. I am currently undergoing tx for 2nd time. Stay strong and make sure you get all the facts and options.

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #18
    Skiffin16 said:

    SoccerFreaks ~ Joe
    Joe was booted here a year or so ago (temporarily) when having a tiff with a fellow CSN member on a different forum.

    If I remember it was just for a few weeks cooling off period. But Joe saw it as an opportunity to pursue other avenues and decided to stay off.

    He does still frequent an post on the CSN FaceBook pages, just saw him post something within the last few days actually...

    If you do a Google search soccerfreaks CSN you can see a few of his older posts here.

    He looks to be active still on What's Next, another ACS survivor support forum.

    Here's a link to his profile on What's Next, with some fairly recent posts, on both H&N and Lung;

    SoccerFreaks

    Here's the link to his blog, provided by DonFoo;

    SoccerFreaks (Joe) ~ BLOG

    Best,
    John

    CSN FaceBook pages ?

    John, is there a link to CSN FaceBook pages?  I did not know that there is a FaceBook page for this group.

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