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14 year old son diagnosed

Forums Pediatric & AYA Melanoma Community 14 year old son diagnosed

  • Post
    Melanoma Mom
    Participant

    My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist.

    My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist. The Dermatologist agreed it was a wart and that he would freeze it over 2-3 visits. The first freezing was in late July and then another two weeks later. When we returned to do the third treatment, the Derm. suggested we do a biopsy to see what virus we were dealing with, as it wasn't shrinking. He assured us he wasn't worried and certainly was not thinking it was cancer. 10 days later he called us from his home and said that he had never in his 25 years of practice been so shocked to get a diagnosis like this on an adolescent and that he had the lab double-check that they hadn't confused slides. He recommended we get follow-up care in Boston as soon as possible (we live in Maine).

    We met with Oncologists at Dana-Farber and a surgeon at Children's Hospital soon afterwards. While their Pathologists had not found the biopsy to be definitively melanoma, we all agreed that the "wart" needed to be removed. In the meantime, the biopsy was sent to various specialists around the country as well as Paris. It was also decided that two other spots that popped up in July, one on his inner arm and one on his torso, that originally looked festered would be removed. These had also been frozen by the Derm. so they weren't able to tell the original formation. There was also a strange colored spot on his outer arm that had been there 10+ years that had the Dermatologists at Children's completely stumped. 

    The surgery took 4 hours and he was released that day. The surgeon felt things went very well and he got clear margins. We returned the following week to learn that the "wart" had definitely tested as melanoma. The two spots from July were pre-melanoma (can't remember the medical term for that) and the 10+ year old spot was benign. Next up was PET/CT/brain MRI. Those all returned clear of tumors,  thank GOD. 

    Two weeks ago a SNB was performed and they took 4 nodes. Again, our son was amazing and left for home the same day. This Thursday, November 18, we will receive word as to whether the cancer has spread to his nodes and what they suggest for treatment.

    We continue to be shocked by this terrible turn of events. Our son is so bright (attends a private prep school), plays three seasons of sports and also rides his bike long distances – Maine to Quebec in two weeks this past summer. He feels, acts and looks the same as always. We have no family history of melanoma and believe me, the sun has never shone on his anus! None of our children have ever had a bad sunburn. The physicians all seem very perplexed with this strange case. They have ordered genetic testing for the 23rd.

    Please keep my son in your thoughts and prayers. His dream is to attend the United States Naval Academy and become a Navy Seal. 

    At this point, we welcome encouragement and stories on "beating the beast". If anyone knows of other young melanoma fighters, we would love to be in touch with them.

    Elizabeth

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  • Replies
      Melanoma Mom
      Participant

      Sorry that posted so many times! I'm a newbie!

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      Melanoma Mom
      Participant

      Sorry that posted so many times! I'm a newbie!

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        Melanoma Mom
        Participant

        I should note, the "wart" was pink colored and had no discoloration. The Oncologist and Surgeon both agreed that it didn't look at all like melanoma. But, alas, the pathology is stating otherwise.

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        Melanoma Mom
        Participant

        I should note, the "wart" was pink colored and had no discoloration. The Oncologist and Surgeon both agreed that it didn't look at all like melanoma. But, alas, the pathology is stating otherwise.

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      glewis923
      Participant

      Dear Miss Elizabeth-

      Let's all hope and pray that even if it is indeed melanoma, y'all caught it at an early stage.  I'm now 48 and have had moles all over me since 'youngster.  Although i did occasionally get sunburns, i was never a sun "worshipper".  The UV- sun factor is not to be dismissed, but i think in people like me and perhaps most certainly your son, melanoma is mainly a genetic thing.

      My son, at 20, had a "pre-melanoma" on his forehead; my older 53 yr. old brother had stage 1 mel. on top of his head.  Both would not have been checked- AND the derm.atologist said "don't worry about that spot"- had it not been for the fact I already had stage 3-b at the time (now stg. 4).  Moral:  Have ALL your family members checked head to toe, and MAKE the dermo. remove ANYTHING you may even Think needs to be.  Do not let them (Dr. Dermo.) dismiss anything.

      Meanwhile, I really wish the best for y'all and pray for best wishes.  I know from my 2 sons how worried a parent can be- as any loving parent would and should be.

      Love, Grady & Family.

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      glewis923
      Participant

      Dear Miss Elizabeth-

      Let's all hope and pray that even if it is indeed melanoma, y'all caught it at an early stage.  I'm now 48 and have had moles all over me since 'youngster.  Although i did occasionally get sunburns, i was never a sun "worshipper".  The UV- sun factor is not to be dismissed, but i think in people like me and perhaps most certainly your son, melanoma is mainly a genetic thing.

      My son, at 20, had a "pre-melanoma" on his forehead; my older 53 yr. old brother had stage 1 mel. on top of his head.  Both would not have been checked- AND the derm.atologist said "don't worry about that spot"- had it not been for the fact I already had stage 3-b at the time (now stg. 4).  Moral:  Have ALL your family members checked head to toe, and MAKE the dermo. remove ANYTHING you may even Think needs to be.  Do not let them (Dr. Dermo.) dismiss anything.

      Meanwhile, I really wish the best for y'all and pray for best wishes.  I know from my 2 sons how worried a parent can be- as any loving parent would and should be.

      Love, Grady & Family.

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      triciad
      Participant

      Hi Elizabeth,

      I'm so sorry to hear about your son's diagnosis, but this is a great place to get information.  I was diagnosed last July with Stage 3B.  Two weeks ago, I finished my last shot of Interferon.  It sounds like I had my melanoma around the same spot as your son.  Keep positive thoughts and have him do the same.  I think the mental aspect of this disease is paramount.

      My sister has a friend whose son was diagnosed around 13.  He is athletic like your son.  It has been over 5 years since his diagnosis…he is doing fine.  Just started college.   No recurrences…no signs of disease.  Stay positive and get informed.  You must be an advocate for your son.  Please post any questions or concerns you might have because there are so many hear willing to help…including me!

      Tricia

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      triciad
      Participant

      Hi Elizabeth,

      I'm so sorry to hear about your son's diagnosis, but this is a great place to get information.  I was diagnosed last July with Stage 3B.  Two weeks ago, I finished my last shot of Interferon.  It sounds like I had my melanoma around the same spot as your son.  Keep positive thoughts and have him do the same.  I think the mental aspect of this disease is paramount.

      My sister has a friend whose son was diagnosed around 13.  He is athletic like your son.  It has been over 5 years since his diagnosis…he is doing fine.  Just started college.   No recurrences…no signs of disease.  Stay positive and get informed.  You must be an advocate for your son.  Please post any questions or concerns you might have because there are so many hear willing to help…including me!

      Tricia

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      Melanoma Mom
      Participant

      I am actually a cancer survivor myself ….. stage 4 thyroid cancer. A much easier beast to tame, but still a very hard time in my life in 1994, with a reoccurence in 1996. Now I look on my experience as a gift so that I can be a better advocate for my son.

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      Melanoma Mom
      Participant

      I am actually a cancer survivor myself ….. stage 4 thyroid cancer. A much easier beast to tame, but still a very hard time in my life in 1994, with a reoccurence in 1996. Now I look on my experience as a gift so that I can be a better advocate for my son.

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      bcl
      Participant

      Hi Elizabeth, sadly we do have other parents of children with mel here, one of the posters gave a list of them recently,  I'll see if I can find it for you.  I have read that children fair better with mel, will find that study for you too.. just wanted to post quickly to apologize for insisting the MRF remove your extra posts, I mean no offence, just trying to get them to pay attention:)  Talk to you soon, linda

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      bcl
      Participant

      Hi Elizabeth, sadly we do have other parents of children with mel here, one of the posters gave a list of them recently,  I'll see if I can find it for you.  I have read that children fair better with mel, will find that study for you too.. just wanted to post quickly to apologize for insisting the MRF remove your extra posts, I mean no offence, just trying to get them to pay attention:)  Talk to you soon, linda

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        Melanoma Mom
        Participant

        I was mortified that they posted so frequently and I searched "Help" on how to remove them and it said to E-mail MRF. Seems like a strange way to have it set up. I have been on other message boards for other topics and we could always remove our posts if we chose to. Oh well ….

        I would love the list and study that you refer to! Thanks!

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        Melanoma Mom
        Participant

        I was mortified that they posted so frequently and I searched "Help" on how to remove them and it said to E-mail MRF. Seems like a strange way to have it set up. I have been on other message boards for other topics and we could always remove our posts if we chose to. Oh well ….

        I would love the list and study that you refer to! Thanks!

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        bcl
        Participant

        Hi Elizabeth, forgive me, I don't think I should give you lot of trial links until you know more. However, I have read that mucosal melanomas in children ( if that is what your son had)  display much less aggressive character than do similar lesions in adult patients.  Hopefully you will find out Thursday that his nodes were clear! 

        Here is a link to a young patient's blog..I belive it was Barbie Girl who posted a list of other children but I can only find  information on really young children at this time.  

        http://www.caringbridge.org/visit/chloefowlkes

        Hope to hear good news from you later this week,  take care,  linda

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        bcl
        Participant

        Hi Elizabeth, forgive me, I don't think I should give you lot of trial links until you know more. However, I have read that mucosal melanomas in children ( if that is what your son had)  display much less aggressive character than do similar lesions in adult patients.  Hopefully you will find out Thursday that his nodes were clear! 

        Here is a link to a young patient's blog..I belive it was Barbie Girl who posted a list of other children but I can only find  information on really young children at this time.  

        http://www.caringbridge.org/visit/chloefowlkes

        Hope to hear good news from you later this week,  take care,  linda

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      EmilyandMike
      Participant
      Hi Elizabeth

      Sorry to hear about your sons diagnosis. I wanted you to get in touch with Danielle who is starting a blog for young people with melanoma (her daughter was 5 or 6 at diagnosis) and she has info on melanoma and young people at http://littlestwarriorspot.com/

      My husband is stage 3a and ever since we have become very aware of the moles on our children. My 9 year old was recently referred to a pediatric derm due to two moles on her vulva. Luckily the doc called them “old moles” .. But it was very stressful to think that my daughter might have melanoma also.

      Anyway it is not uncommon for melanoma to present where the sun dont shine…usually mucosal melanoma.

      We will pray that you get good results on the 18th.
      Emily
      http://Www.emandmichael.com

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      EmilyandMike
      Participant
      Hi Elizabeth

      Sorry to hear about your sons diagnosis. I wanted you to get in touch with Danielle who is starting a blog for young people with melanoma (her daughter was 5 or 6 at diagnosis) and she has info on melanoma and young people at http://littlestwarriorspot.com/

      My husband is stage 3a and ever since we have become very aware of the moles on our children. My 9 year old was recently referred to a pediatric derm due to two moles on her vulva. Luckily the doc called them “old moles” .. But it was very stressful to think that my daughter might have melanoma also.

      Anyway it is not uncommon for melanoma to present where the sun dont shine…usually mucosal melanoma.

      We will pray that you get good results on the 18th.
      Emily
      http://Www.emandmichael.com

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        Love_Monkey
        Participant

        Thanks Emily for pointing Elizabeth to my blog.

        Elizabeth, Rachael's oncologist is at M.D. Anderson and he works with a lot of pediatric melanoma patients.  I know you'll find great advice and support here but like Jim says, the information can be VERY scary.

        I created my site so that parents could go and have a place to look around, learn and not have the daylights scared out of them.  I have gently nudged Dr. Hughes with regards to the FAQ section tonight and he said he would get on it.  If you have any questions you would like answered, please let me know and I will pass them to him.

        I'm available anytime if you want to talk.

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        Love_Monkey
        Participant

        Thanks Emily for pointing Elizabeth to my blog.

        Elizabeth, Rachael's oncologist is at M.D. Anderson and he works with a lot of pediatric melanoma patients.  I know you'll find great advice and support here but like Jim says, the information can be VERY scary.

        I created my site so that parents could go and have a place to look around, learn and not have the daylights scared out of them.  I have gently nudged Dr. Hughes with regards to the FAQ section tonight and he said he would get on it.  If you have any questions you would like answered, please let me know and I will pass them to him.

        I'm available anytime if you want to talk.

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      Jim in Denver
      Participant

      Hi Elizabeth,

      I am sorry to read about your son and the anguish you are going through right now.  You have found a community who can help with information and support.  As you will hear from others, it is important to have a Melanoma Specialist in your corner, and there are fine ones at Dana Farber, like Keith Flaherty, who is also a well known researcher.  Try to remain calm and ask questions – write them down as well as the answers.  Be your child's advocate, and show him that you are resolved to help him take all necessary steps to fight this.  Show confidence, even if you find that hard to do right now.

      The "wart" would logically be Mucosal Melanoma, which is rare (or maybe "strange" if the Doc has not seen it before) but treatable.  Was mucosal melanome mentioned to you?  I was told tthat I might have mucosal several months back, and I did some research.  They would look for what is called a C-Kit gene mutation to determine treatment.  Your pathology report should tell you more – please get a printed copy and get copies of all scans on CDs if and when they occur.  It is not clear why there would be any benefit from having "the biopsy… sent to various specialists around the country as well as Paris" – they have their own lab right there in Boston, I believe, although maybe they wanted a 2nd opinion (and 3rd, 4th, and 5th?). 

      There are very promising treatments availabe for your son.  Don't believe all the grim stats you see online – those only look backwards, and your son is not a statistic!  Anyway, best wishes to you and your family in this fight.

      Best,

      Jim

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      Jim in Denver
      Participant

      Hi Elizabeth,

      I am sorry to read about your son and the anguish you are going through right now.  You have found a community who can help with information and support.  As you will hear from others, it is important to have a Melanoma Specialist in your corner, and there are fine ones at Dana Farber, like Keith Flaherty, who is also a well known researcher.  Try to remain calm and ask questions – write them down as well as the answers.  Be your child's advocate, and show him that you are resolved to help him take all necessary steps to fight this.  Show confidence, even if you find that hard to do right now.

      The "wart" would logically be Mucosal Melanoma, which is rare (or maybe "strange" if the Doc has not seen it before) but treatable.  Was mucosal melanome mentioned to you?  I was told tthat I might have mucosal several months back, and I did some research.  They would look for what is called a C-Kit gene mutation to determine treatment.  Your pathology report should tell you more – please get a printed copy and get copies of all scans on CDs if and when they occur.  It is not clear why there would be any benefit from having "the biopsy… sent to various specialists around the country as well as Paris" – they have their own lab right there in Boston, I believe, although maybe they wanted a 2nd opinion (and 3rd, 4th, and 5th?). 

      There are very promising treatments availabe for your son.  Don't believe all the grim stats you see online – those only look backwards, and your son is not a statistic!  Anyway, best wishes to you and your family in this fight.

      Best,

      Jim

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      Melanoma Mom
      Participant

      I want to thank everyone for their kind words and suggestions. I am going to check out the links that you provided ASAP! I would really like to connect with other parents, in particular, as a support. 

      Here is my wonderful son's caringbridge site if you would like to see it:

      http://www.caringbridge.org/visit/josiahhenderson

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      Melanoma Mom
      Participant

      I want to thank everyone for their kind words and suggestions. I am going to check out the links that you provided ASAP! I would really like to connect with other parents, in particular, as a support. 

      Here is my wonderful son's caringbridge site if you would like to see it:

      http://www.caringbridge.org/visit/josiahhenderson

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      teenagermom
      Participant

      Hi Elizabeth,

      I do not post much, but I do still come here most days just to stay abreast of things.  My son, Taylor, was diagnosed in 2006 at the age of 15 1/2.  His primary was located on his temple area.  His derm was also shocked that Taylor's small mole turned out to be mel.  He wanted to refer him to a local onc (we are in NC).  But luckily, I found this site and learned that I needed to get him ASAP to a mel specialist.  That is when I became an advocate for my son, I mean really an advocate (not just a mom!).  I learned about Dr. Richard White at Blumenthal Cancer Center in Charlotte NC.  He has been wonderful with Taylor.  He had to re-do the WLE (that we let the derm do originallyfrown) and also did an SNB (which was clear).

      Taylor is now 20, working 2 jobs and getting ready to start college (he is a late bloomer!).  The one thing I can tell you, is make sure your son is being treated by a melanoma specialist, not just a regular oncologist.  It does make a difference!  There are other parents of child/teen mel survivors here, hopefully some others will chime in soon.  Just know you have found a safe place and there is alot of knowledge that can be found here.  It can be overwhelming, but we are here for support all you have to do is ask!

      Kristin

       

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      teenagermom
      Participant

      Hi Elizabeth,

      I do not post much, but I do still come here most days just to stay abreast of things.  My son, Taylor, was diagnosed in 2006 at the age of 15 1/2.  His primary was located on his temple area.  His derm was also shocked that Taylor's small mole turned out to be mel.  He wanted to refer him to a local onc (we are in NC).  But luckily, I found this site and learned that I needed to get him ASAP to a mel specialist.  That is when I became an advocate for my son, I mean really an advocate (not just a mom!).  I learned about Dr. Richard White at Blumenthal Cancer Center in Charlotte NC.  He has been wonderful with Taylor.  He had to re-do the WLE (that we let the derm do originallyfrown) and also did an SNB (which was clear).

      Taylor is now 20, working 2 jobs and getting ready to start college (he is a late bloomer!).  The one thing I can tell you, is make sure your son is being treated by a melanoma specialist, not just a regular oncologist.  It does make a difference!  There are other parents of child/teen mel survivors here, hopefully some others will chime in soon.  Just know you have found a safe place and there is alot of knowledge that can be found here.  It can be overwhelming, but we are here for support all you have to do is ask!

      Kristin

       

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      Becky
      Participant

      Hi Elizabeth

      My son was older than yours when he was dx last year (20..yes, an adult but for me still my baby!). his was also a puzzle and shock to the doctors because it was on the tip of his tongue. Send off to 3 pathologists to confirm that it was melanoma. It had spread to one lymph node and he just finished a year of interferon. Pet scan today…

      I'd be happy to talk…[email protected]

       

      Becky

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      Becky
      Participant

      Hi Elizabeth

      My son was older than yours when he was dx last year (20..yes, an adult but for me still my baby!). his was also a puzzle and shock to the doctors because it was on the tip of his tongue. Send off to 3 pathologists to confirm that it was melanoma. It had spread to one lymph node and he just finished a year of interferon. Pet scan today…

      I'd be happy to talk…[email protected]

       

      Becky

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        Melanoma Mom
        Participant

        Betty, I'm thinking of you and your son today!! xo

         

        It seems like Interferon is the drug of choice …. I'm still new to all of this, of course. If this is the route suggested, I am curious of a few things:

        1) Is the first month always intravenious, and if so, I assume he reports to the hospital on the given days? The shots that follow after the first month are administered by "trained" family members? I'm just wondering about missed school, etc.

        2) If we don't live near our treatment center, do you think they will set it up so that we can receive these treatments at a more local cancer center?

        3) Does this drug usually cause hair loss?

         

        So much to think about ……..

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        Melanoma Mom
        Participant

        Betty, I'm thinking of you and your son today!! xo

         

        It seems like Interferon is the drug of choice …. I'm still new to all of this, of course. If this is the route suggested, I am curious of a few things:

        1) Is the first month always intravenious, and if so, I assume he reports to the hospital on the given days? The shots that follow after the first month are administered by "trained" family members? I'm just wondering about missed school, etc.

        2) If we don't live near our treatment center, do you think they will set it up so that we can receive these treatments at a more local cancer center?

        3) Does this drug usually cause hair loss?

         

        So much to think about ……..

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        Melanoma Mom
        Participant

        Ooops, I meant Becky. :)

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        Melanoma Mom
        Participant

        Ooops, I meant Becky. :)

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        KatyWI
        Participant

        Hi there,

        I wanted to respond to your questions about interferon.  Interferon is typically offered when a person is rendered free of disease via surgery but considered to be at a higher risk of recurrence.  Usually, it's offered to people at Stage III.  It sounds like you don't know your son's staging yet?

        Anyway, that being said, to address your questions:  (I took interferon 8 years ago, in my twenties.)

        1)  The first month is IV and it can be done in a hosptial setting or just a chemo-center type place.  It's possible to schedule the IVs for after school, but he may end up feeling bad enough to miss some school due to side effects.  I did work through my IV portion, but reduced to about 6-7 hours a day.  The shots are either self-administered or done by a family member.  It's not nearly as bad/scary as it sounds.  They give you a little pre-measured "cartridge" type thing, and the needles are really thin and really short. 

        2)  I don't know if they can get a local facility to administer it for you.  I was treated locally for my initial diagnosis.

        3)  Interferon is not chemo, and it won't make him bald.  I had some hair thinning after six to nine months.  It wasn't noticeable to anyone but me (and only then because I kept clogging the shower drain!).  It grew right back.

        I'm so sorry your family is dealing with this!  I hope all the rest of the news you get is positive and your son can complete suirgery and leave this behind forever.

        Best,

        KatyWI

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        KatyWI
        Participant

        Hi there,

        I wanted to respond to your questions about interferon.  Interferon is typically offered when a person is rendered free of disease via surgery but considered to be at a higher risk of recurrence.  Usually, it's offered to people at Stage III.  It sounds like you don't know your son's staging yet?

        Anyway, that being said, to address your questions:  (I took interferon 8 years ago, in my twenties.)

        1)  The first month is IV and it can be done in a hosptial setting or just a chemo-center type place.  It's possible to schedule the IVs for after school, but he may end up feeling bad enough to miss some school due to side effects.  I did work through my IV portion, but reduced to about 6-7 hours a day.  The shots are either self-administered or done by a family member.  It's not nearly as bad/scary as it sounds.  They give you a little pre-measured "cartridge" type thing, and the needles are really thin and really short. 

        2)  I don't know if they can get a local facility to administer it for you.  I was treated locally for my initial diagnosis.

        3)  Interferon is not chemo, and it won't make him bald.  I had some hair thinning after six to nine months.  It wasn't noticeable to anyone but me (and only then because I kept clogging the shower drain!).  It grew right back.

        I'm so sorry your family is dealing with this!  I hope all the rest of the news you get is positive and your son can complete suirgery and leave this behind forever.

        Best,

        KatyWI

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        Phil S
        Participant

        Elizabeth     I also am so sorry you and your family are facing this situation.  Kids should be worrying about school and friends, and thinking about their future college choices, etc, not having to deal with cancer.  Anyway, my husband was diagnosed with muscosal/anal melanoma in January 2010.  At that time, our local doctors were also shocked about his diagnosis, as this type of melanoma is very rare.  As you have stated, its an area where the sun isn't a factor. 

        Anyway, we live in upstate NY so we traveled to Boston/Dana Farber for case review and scans.  We love the team we have at Dana Farber and my husband continues to get his CAT/PET/MRI scans there and sees the doctors every 4-5 months or as needed.  My husband also chose to do the year of interferon, which he is a little more than half way through.  He has been able to work through the seven months of interferon so far, and is generally doing well.  He receives his interferon in our area and we have a local doctor who monitors the blood levels and liver function, etc.   As my husband views it, interferon is a "shot in the dark", but he felt he wanted/needed to do something.  We return to Dana Farber in mid-December for scans.  I hope that you have good tests results this week.  Please keep us posted and we will be praying for you and your son.   Valerie (Phil's wife)

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        Phil S
        Participant

        Elizabeth     I also am so sorry you and your family are facing this situation.  Kids should be worrying about school and friends, and thinking about their future college choices, etc, not having to deal with cancer.  Anyway, my husband was diagnosed with muscosal/anal melanoma in January 2010.  At that time, our local doctors were also shocked about his diagnosis, as this type of melanoma is very rare.  As you have stated, its an area where the sun isn't a factor. 

        Anyway, we live in upstate NY so we traveled to Boston/Dana Farber for case review and scans.  We love the team we have at Dana Farber and my husband continues to get his CAT/PET/MRI scans there and sees the doctors every 4-5 months or as needed.  My husband also chose to do the year of interferon, which he is a little more than half way through.  He has been able to work through the seven months of interferon so far, and is generally doing well.  He receives his interferon in our area and we have a local doctor who monitors the blood levels and liver function, etc.   As my husband views it, interferon is a "shot in the dark", but he felt he wanted/needed to do something.  We return to Dana Farber in mid-December for scans.  I hope that you have good tests results this week.  Please keep us posted and we will be praying for you and your son.   Valerie (Phil's wife)

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        Jim in Denver
        Participant

        Please see a Melanoma Specialist, the sooner the better.  Please get a diagnosis from a specialist, and find out if this is Mucosal Melanoma.  Get genetic testing done – and this can be done fairly quickly.  Try not to go crazy because of the uncertainty right now – it will take longer than you would like to get answers, unfortunately  You have LOTS  of good questions, but please don't jump to conclusions about treatment before you even get a good diagnosis!  Does that make sense to you?

        Best,

        Jim

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        Melanoma Mom
        Participant

        Yes, we are seeing a Melanoma Specialist as well as a Pediatric Oncologist that specializes in unusual cancers in children on Thursday.  We feel the care and attention to detail we have received at Dana-Farber has been nothing but amazing thus far. I think that is why it has taken us almost 10 weeks to get to the point of true staging and treatment suggestions.

        We had the Chief of Surgery at Children's Hospital Boston do the initial removal of the growths and he is simply a phenominal physician. We knew from the onset that we couldn't handle this situation in Maine. But going forth, I hope that we can do any treatment options locally, as we have two younger children as well and the 2.5 hour drive one-way does not make it condusive to daily travel. BUT, we will do anything to help Josiah get better, including traveling anywhere in the U.S. 

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        Melanoma Mom
        Participant

        Is genetic testing only done for certain types of melanoma?

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        Jim in Denver
        Participant

        The short answer is no, but there really aren't that many "types".  Look here for more info on "types" of melanoma:

        http://www.skincarephysicians.com/skincancernet/four_types.html

        Genetic testing is done to identify particular mutations for which tratments hve been or are being developed.  The general idea is to block pathways by which melanoma is spread, though there needs to be more research performed.  The treatments being developed show great promise, although each one blocks only one path and it is theorized that melanoma can spread through multiple genetic pathways simultaneously.  I will not list the various mutations here, but there are only a few for which treatments are currently being developed.  

        Don't worry too much about the genetic issues right now – your Docs will help you figure out what areas you may need to learn more about  to be able to make informed decisions.  Your desire to become informed is commendable, and it is clear that you are already a very good advocate for your son and family.   Your son is in very good hands at Dana Farber.  Drs Keith Flaherty and Stephen Hodi are two of the big names in melanoma reaseach who practice there, and it is worth the drive down to Boston, in my opinion. 

        Best Wishes,

        Jim

         

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        Jim in Denver
        Participant

        The short answer is no, but there really aren't that many "types".  Look here for more info on "types" of melanoma:

        http://www.skincarephysicians.com/skincancernet/four_types.html

        Genetic testing is done to identify particular mutations for which tratments hve been or are being developed.  The general idea is to block pathways by which melanoma is spread, though there needs to be more research performed.  The treatments being developed show great promise, although each one blocks only one path and it is theorized that melanoma can spread through multiple genetic pathways simultaneously.  I will not list the various mutations here, but there are only a few for which treatments are currently being developed.  

        Don't worry too much about the genetic issues right now – your Docs will help you figure out what areas you may need to learn more about  to be able to make informed decisions.  Your desire to become informed is commendable, and it is clear that you are already a very good advocate for your son and family.   Your son is in very good hands at Dana Farber.  Drs Keith Flaherty and Stephen Hodi are two of the big names in melanoma reaseach who practice there, and it is worth the drive down to Boston, in my opinion. 

        Best Wishes,

        Jim

         

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        Melanoma Mom
        Participant

        Is genetic testing only done for certain types of melanoma?

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        Melanoma Mom
        Participant

        Yes, we are seeing a Melanoma Specialist as well as a Pediatric Oncologist that specializes in unusual cancers in children on Thursday.  We feel the care and attention to detail we have received at Dana-Farber has been nothing but amazing thus far. I think that is why it has taken us almost 10 weeks to get to the point of true staging and treatment suggestions.

        We had the Chief of Surgery at Children's Hospital Boston do the initial removal of the growths and he is simply a phenominal physician. We knew from the onset that we couldn't handle this situation in Maine. But going forth, I hope that we can do any treatment options locally, as we have two younger children as well and the 2.5 hour drive one-way does not make it condusive to daily travel. BUT, we will do anything to help Josiah get better, including traveling anywhere in the U.S. 

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        Jim in Denver
        Participant

        Please see a Melanoma Specialist, the sooner the better.  Please get a diagnosis from a specialist, and find out if this is Mucosal Melanoma.  Get genetic testing done – and this can be done fairly quickly.  Try not to go crazy because of the uncertainty right now – it will take longer than you would like to get answers, unfortunately  You have LOTS  of good questions, but please don't jump to conclusions about treatment before you even get a good diagnosis!  Does that make sense to you?

        Best,

        Jim

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      MaryMary73
      Participant

      Hi Elizabeth,

      I see that you are all waiting for the results on Nov 18th. I too am waiting to find out if I am "cancer-free" on that same day. I had a weird looking mole on my back. My husband (who isn't blind!) never bothered to mention to me that there was an "ugly duckling". My mom noticed it when I asked her to scratch my back (Oct 18). God bless Moms everywhere!! Husband said that he has been seeing it for at least the last couple of years. Time to panic? You bet! I immediately went to my family doctor (Oct 21) who booked an appointment for me to see a dermatopathologist, who has about 30 years of experience and  who runs the dermatology clinic at one of the bigger hospitals in my city, almost right away (Oct 26). Biopsy done, melanoma diagnosed (Nov 2). I am thankful that it was only 0.39mm deep but I did need to have surgery with a plastic surgeon in order to remove a bit more skin where the tumour was (Nov 4). Stitches come off on the 18th and the plastic surgeon will let me know if I am cured (clear margins is the correct term, I think).

      I am hoping and praying for me and I will keep your son in my hopes and prayers as well.

      Maria in Toronto, Canada

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      MaryMary73
      Participant

      Hi Elizabeth,

      I see that you are all waiting for the results on Nov 18th. I too am waiting to find out if I am "cancer-free" on that same day. I had a weird looking mole on my back. My husband (who isn't blind!) never bothered to mention to me that there was an "ugly duckling". My mom noticed it when I asked her to scratch my back (Oct 18). God bless Moms everywhere!! Husband said that he has been seeing it for at least the last couple of years. Time to panic? You bet! I immediately went to my family doctor (Oct 21) who booked an appointment for me to see a dermatopathologist, who has about 30 years of experience and  who runs the dermatology clinic at one of the bigger hospitals in my city, almost right away (Oct 26). Biopsy done, melanoma diagnosed (Nov 2). I am thankful that it was only 0.39mm deep but I did need to have surgery with a plastic surgeon in order to remove a bit more skin where the tumour was (Nov 4). Stitches come off on the 18th and the plastic surgeon will let me know if I am cured (clear margins is the correct term, I think).

      I am hoping and praying for me and I will keep your son in my hopes and prayers as well.

      Maria in Toronto, Canada

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      Sharyn
      Participant

      Hi Elizabeth,

      Like everyone else, I am so sorry to hear that such a young lad is dealing with this horrible beast. But after reading all the responses so far, I am just shaking my head in disbelief at all the people who went to see a doctor/dermatologist and were told it was nothing to worry about. Well, I can add my name to that list. I was told the pink lump on my upper calf was a dermatafibroma, and since it wasn't urgent, I had to wait for almost 4 months to see a surgeon. By then, I had 3 more subcutaneous lumps, which I later learned were intransit lesions. Even then, no one picked up on it!  When the pathology came back, it was metastatic melanoma, 0.9mm deep, but my surgeon was so shocked, he sent it back to the lab for a recheck. And the rest is history. What the hell is wrong with all these "supposed" specialists? If so many people have melanoma that doesn't start from a mole, then why do derms still insist on ignoring amelanotic lumps? And why do they do things like freezing, and shave biopsies? Why don't they err on the side of caution, and biopsy the lump when it's still small, rather than wait until after it has done more damage? Sorry for venting, but a lot of us wouldn't be where we are now if our initial lumps had been taken more seriously, and biopsied right away. I mean, isn't early detection key? GRRR…!!!

      Anyway, I wish you and your son well when you go for the SNB results on Thursday. Please share the results with us. I hope it's all clear, but in case it's not, there are a lot of knowledgeable people here who can make suggestions and offer advice on adjuvent treatment. Sending positive vibes from Newfoundland.

      Hugs,

      Sharyn, Stage IV

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        bcl
        Participant

        Hi Sharyn, I noticed the same thing.  My own doc said she was more surprised than I was when my itchy pale pink normal looking spitz mole came back as a melanoma. I'd had to fight to have it removed, yet itchy is a well known warning sign. Recently on a UK mel board  I came across a thread devoted to the misdiagnosis of mel;  it would appear there are a lot of surprised docs across the Atlantic too…      I don't know if they are just lame docs or scared of law suits docs.. either way,  they should bloody well be ashamed of themselves.

        sending you hugs, linda

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        bcl
        Participant

        Hi Sharyn, I noticed the same thing.  My own doc said she was more surprised than I was when my itchy pale pink normal looking spitz mole came back as a melanoma. I'd had to fight to have it removed, yet itchy is a well known warning sign. Recently on a UK mel board  I came across a thread devoted to the misdiagnosis of mel;  it would appear there are a lot of surprised docs across the Atlantic too…      I don't know if they are just lame docs or scared of law suits docs.. either way,  they should bloody well be ashamed of themselves.

        sending you hugs, linda

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      Sharyn
      Participant

      Hi Elizabeth,

      Like everyone else, I am so sorry to hear that such a young lad is dealing with this horrible beast. But after reading all the responses so far, I am just shaking my head in disbelief at all the people who went to see a doctor/dermatologist and were told it was nothing to worry about. Well, I can add my name to that list. I was told the pink lump on my upper calf was a dermatafibroma, and since it wasn't urgent, I had to wait for almost 4 months to see a surgeon. By then, I had 3 more subcutaneous lumps, which I later learned were intransit lesions. Even then, no one picked up on it!  When the pathology came back, it was metastatic melanoma, 0.9mm deep, but my surgeon was so shocked, he sent it back to the lab for a recheck. And the rest is history. What the hell is wrong with all these "supposed" specialists? If so many people have melanoma that doesn't start from a mole, then why do derms still insist on ignoring amelanotic lumps? And why do they do things like freezing, and shave biopsies? Why don't they err on the side of caution, and biopsy the lump when it's still small, rather than wait until after it has done more damage? Sorry for venting, but a lot of us wouldn't be where we are now if our initial lumps had been taken more seriously, and biopsied right away. I mean, isn't early detection key? GRRR…!!!

      Anyway, I wish you and your son well when you go for the SNB results on Thursday. Please share the results with us. I hope it's all clear, but in case it's not, there are a lot of knowledgeable people here who can make suggestions and offer advice on adjuvent treatment. Sending positive vibes from Newfoundland.

      Hugs,

      Sharyn, Stage IV

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      JerryfromFauq
      Participant

      Welcome to our Group.

         You have received much good input above.  Yes, melanoma is a scary diagnosis.  At the early stages it should be looked at and followed up on.  Do not become totaly parnoid about it.  You will read that mucousal melanoma is more aggressive than other varieties.  This is  often stated because one is often at an advanced stage before it is discovered.  I started cmplaining to my GP in Jan 2003, it was May 2006 before any attention was paid to my complaints.  The local general surgeon played games and it was Jan 2007 before I learned what an Oncologist was.  By March I was stage IV and told that I would have major breathing problems within 30 days and that according to statistics, 50% of Stge IV patients would be gone in the next 6 month time period with a rapid death rate following that.

           I  am not a statitic, I am me !  Your son received a quick followup and this is great.  This greatly enhances his chance for a good and long live.  IF there were to be any metastisis, it would mmost likely be to the groin lymph nodes.  If your son feels any new lymphs in the crease between the abdomen and the legs I would get these nodes checked.  An enlargement could be due to other than cancer, but do the follow-up.

          Check the pathology reports for any mention of mucousal, only one of many reports on me ever mentioned the word.  Mucousal does lead one to asking about geting the two c-kit tests that are available for mucousal melanoma's.  I started on Gleevec (a targeted treatment), in March 2008 (before it was even in clinical trials for mucousal melanoma) and have had my melanoma remain fairly stable for the 20 months since.  A follow on drug has since started trials and has been succesful in at leat one patient I know with mucousal melanoma.  If the C-kit test are conducted, one can know a likely treatment path to quickly try. (The targeted drugs seem to be beneficial in about 50% of the C-kit cases of melanoma.

          I will be glad to discuss my case and experencies with you either in emails or telephonically if  you would like.

      JerryfromFauq

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        Melanoma Mom
        Participant

        Feels like today will move slowly …. I want tomorrow to come and yet I am terrified of what we will find out. Our Oncology appt. is at 1:45pm  and then our first Genetic consult is at 3:30pm at Dana-Farber. Be sending positive vibes and prayers at 1:45pm on 11/18/10!

        I don't harbor any ill will towards our local Dermatologist. I am just thankful that he did proceed to have a biopsy taken and not just keep freezing it off, or have any ol' surgeon remove it, thinking it was a wart, and not get clear margins. A pink growth on an adolescent's rear end doesn't typically throw up the warning signs so I understand. Could we have had a few month's jump start on this if he had been worried from the get-go? Yes, but I can't turn back time and I am just thankful that we are proceeding. Remember – my son never told us about this issue (teenagers!) and if I hadn't noticed his squirming in the car and/or the bloody discharge in the boxers, we could still well be sitting in ignorance. Who knows when he would have told us about it ……

        Sharyn, my Mother is from Lunenburg, Nova Scotia! My father is the proud owner of the Sherman Zwicker, the sister ship to the Bluenose! My Grandfather, Josiah, was a captain on a fishing schooner, the Sally Irene. My father has brought the boat back to Newfoundland a number of times and CBC did a feature hour-long story on it back in the 1990's. The boat is displayed at a marine museum here in Maine, but she is still sea-worthy.

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        Melanoma Mom
        Participant

        Feels like today will move slowly …. I want tomorrow to come and yet I am terrified of what we will find out. Our Oncology appt. is at 1:45pm  and then our first Genetic consult is at 3:30pm at Dana-Farber. Be sending positive vibes and prayers at 1:45pm on 11/18/10!

        I don't harbor any ill will towards our local Dermatologist. I am just thankful that he did proceed to have a biopsy taken and not just keep freezing it off, or have any ol' surgeon remove it, thinking it was a wart, and not get clear margins. A pink growth on an adolescent's rear end doesn't typically throw up the warning signs so I understand. Could we have had a few month's jump start on this if he had been worried from the get-go? Yes, but I can't turn back time and I am just thankful that we are proceeding. Remember – my son never told us about this issue (teenagers!) and if I hadn't noticed his squirming in the car and/or the bloody discharge in the boxers, we could still well be sitting in ignorance. Who knows when he would have told us about it ……

        Sharyn, my Mother is from Lunenburg, Nova Scotia! My father is the proud owner of the Sherman Zwicker, the sister ship to the Bluenose! My Grandfather, Josiah, was a captain on a fishing schooner, the Sally Irene. My father has brought the boat back to Newfoundland a number of times and CBC did a feature hour-long story on it back in the 1990's. The boat is displayed at a marine museum here in Maine, but she is still sea-worthy.

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        Melanoma Mom
        Participant

        Forgot to mention that I have requested all pathology reports and scans on CD and they said they will have them ready for us tomorrow. 

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        Melanoma Mom
        Participant

        Forgot to mention that I have requested all pathology reports and scans on CD and they said they will have them ready for us tomorrow. 

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        Becky
        Participant

        The waiting is hard! My son's Pet scan was yesterday…and the few days for the results are the hardest. I try not to let on (to him) how worried I am and he is not one to talk about it, at least to me.

        Sending positive Mom Vibes your way…

        Becky

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        Becky
        Participant

        The waiting is hard! My son's Pet scan was yesterday…and the few days for the results are the hardest. I try not to let on (to him) how worried I am and he is not one to talk about it, at least to me.

        Sending positive Mom Vibes your way…

        Becky

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      JerryfromFauq
      Participant

      Welcome to our Group.

         You have received much good input above.  Yes, melanoma is a scary diagnosis.  At the early stages it should be looked at and followed up on.  Do not become totaly parnoid about it.  You will read that mucousal melanoma is more aggressive than other varieties.  This is  often stated because one is often at an advanced stage before it is discovered.  I started cmplaining to my GP in Jan 2003, it was May 2006 before any attention was paid to my complaints.  The local general surgeon played games and it was Jan 2007 before I learned what an Oncologist was.  By March I was stage IV and told that I would have major breathing problems within 30 days and that according to statistics, 50% of Stge IV patients would be gone in the next 6 month time period with a rapid death rate following that.

           I  am not a statitic, I am me !  Your son received a quick followup and this is great.  This greatly enhances his chance for a good and long live.  IF there were to be any metastisis, it would mmost likely be to the groin lymph nodes.  If your son feels any new lymphs in the crease between the abdomen and the legs I would get these nodes checked.  An enlargement could be due to other than cancer, but do the follow-up.

          Check the pathology reports for any mention of mucousal, only one of many reports on me ever mentioned the word.  Mucousal does lead one to asking about geting the two c-kit tests that are available for mucousal melanoma's.  I started on Gleevec (a targeted treatment), in March 2008 (before it was even in clinical trials for mucousal melanoma) and have had my melanoma remain fairly stable for the 20 months since.  A follow on drug has since started trials and has been succesful in at leat one patient I know with mucousal melanoma.  If the C-kit test are conducted, one can know a likely treatment path to quickly try. (The targeted drugs seem to be beneficial in about 50% of the C-kit cases of melanoma.

          I will be glad to discuss my case and experencies with you either in emails or telephonically if  you would like.

      JerryfromFauq

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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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