New to all of this and not liking it at all
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New to all of this and not liking it at all

› Forums › General Melanoma Community › New to all of this and not liking it at all

  • Post
    • November 1, 2011 at 3:04 am
    Kim41
    Participant

    Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists.

    Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists. I did see that they have a melanoma center at Penn state Hershey Mecical center. Just wandering if thats a good place to go. Any info would be greatly appreciated.

Viewing 14 reply threads
  • Replies
      • November 1, 2011 at 11:12 am
      MariaH
      Participant

      I know that the protocol my husband is on right now (IL-2 followed by Temodar) is being conducted as a clinical study trial there.  If it is close to you, it would be a good place to start.

      Best wishes,

      Maria

        • November 1, 2011 at 3:48 pm
        Kim41
        Participant

        Thank you Maria  for responding and for the information. This is all just so overwhelming. This site has given  me so much information. Hope things go well for your husband. Kim                                                                                                                                                                          

        • November 1, 2011 at 3:48 pm
        Kim41
        Participant

        Thank you Maria  for responding and for the information. This is all just so overwhelming. This site has given  me so much information. Hope things go well for your husband. Kim                                                                                                                                                                          

        • November 1, 2011 at 3:48 pm
        Kim41
        Participant

        Thank you Maria  for responding and for the information. This is all just so overwhelming. This site has given  me so much information. Hope things go well for your husband. Kim                                                                                                                                                                          

      • November 1, 2011 at 11:12 am
      MariaH
      Participant

      I know that the protocol my husband is on right now (IL-2 followed by Temodar) is being conducted as a clinical study trial there.  If it is close to you, it would be a good place to start.

      Best wishes,

      Maria

      • November 1, 2011 at 11:12 am
      MariaH
      Participant

      I know that the protocol my husband is on right now (IL-2 followed by Temodar) is being conducted as a clinical study trial there.  If it is close to you, it would be a good place to start.

      Best wishes,

      Maria

      • November 1, 2011 at 11:23 am
      FormerCaregiver
      Participant

      Welcome to our forum. Thanks for completing the details on your profile page.

      I feel that the depth of the primary lesion is the most important prognostic indicator. As you may know, melanoma research has advanced rapidly over the last few years. Therefore, there are good reasons to be optimistic.

      Hopefully other people will give you their opinions regarding treatment centres in your area.

      Frank from Australia

        • November 1, 2011 at 3:52 pm
        Kim41
        Participant

        Thank you Frank. I was reading all these profiles and unsure why all the information was not completed. I wanted to know more about peoples stories. It helps so much but can also be scary. Its better to be informed than not. Thanks for responding.                                                 Kim

        • November 1, 2011 at 3:52 pm
        Kim41
        Participant

        Thank you Frank. I was reading all these profiles and unsure why all the information was not completed. I wanted to know more about peoples stories. It helps so much but can also be scary. Its better to be informed than not. Thanks for responding.                                                 Kim

        • November 1, 2011 at 3:52 pm
        Kim41
        Participant

        Thank you Frank. I was reading all these profiles and unsure why all the information was not completed. I wanted to know more about peoples stories. It helps so much but can also be scary. Its better to be informed than not. Thanks for responding.                                                 Kim

      • November 1, 2011 at 11:23 am
      FormerCaregiver
      Participant

      Welcome to our forum. Thanks for completing the details on your profile page.

      I feel that the depth of the primary lesion is the most important prognostic indicator. As you may know, melanoma research has advanced rapidly over the last few years. Therefore, there are good reasons to be optimistic.

      Hopefully other people will give you their opinions regarding treatment centres in your area.

      Frank from Australia

      • November 1, 2011 at 11:23 am
      FormerCaregiver
      Participant

      Welcome to our forum. Thanks for completing the details on your profile page.

      I feel that the depth of the primary lesion is the most important prognostic indicator. As you may know, melanoma research has advanced rapidly over the last few years. Therefore, there are good reasons to be optimistic.

      Hopefully other people will give you their opinions regarding treatment centres in your area.

      Frank from Australia

      • November 1, 2011 at 11:58 am
      lhaley
      Participant

      I'm sorry that you've had to join us but hopefully you can find lots of info.  Having been introduced by wrong information definitely has started you on the wrong way. 

      We used to live in Delaware but not exactly sure of your distances.  Univ. of Penn has a few melanoma specialists and they do have different trials.  At this point you might be offered right now for them to offer a removal of the lymph nodes area.  You just need to take enough time to listen to different opinions.

      For today, go to the local hospital and get a hard copy of all pathology as well as a copy of scans that have already been done. That way when you decide were to go you also have a copy to take with you.  When you go to a major cancer center they will automaticallly request the pathology and they will re-read the last pathology.    just make sure that all paperwork has been signed so that they can refer info on.

      It will most likely take 2 weeks to get everything scheduled with a new melanoma specialist (part of that time is rereading the pathology). During that time start reading and listing the questions. 

      Don't panic.  Make education decisions.  Right now if 1 postivie node that should be putting you at stage 3A.  

      Linda

      stage 1A  1979

      Stage IV 2006

      presently brain met (and planning on beating this also!)

        • November 1, 2011 at 3:58 pm
        Kim41
        Participant

        Thankyou Linda, I go back to the surgical oncologist at Danville tomorrow and will talk about my options and who I should follow up with. I have a whole list of questions written down and have my first path report plus the nurse said she would have this last path reporot ready for me. I know athey will want to remove the rest of my lymph nodes in left groin and there was talk that they were not sure the margins were clear. I already have a six inch incision on my lateral left thigh. Thanks for the info. Best of luch to you with your battle with this terrible cancer.              Kim

        • November 1, 2011 at 3:58 pm
        Kim41
        Participant

        Thankyou Linda, I go back to the surgical oncologist at Danville tomorrow and will talk about my options and who I should follow up with. I have a whole list of questions written down and have my first path report plus the nurse said she would have this last path reporot ready for me. I know athey will want to remove the rest of my lymph nodes in left groin and there was talk that they were not sure the margins were clear. I already have a six inch incision on my lateral left thigh. Thanks for the info. Best of luch to you with your battle with this terrible cancer.              Kim

        • November 1, 2011 at 3:58 pm
        Kim41
        Participant

        Thankyou Linda, I go back to the surgical oncologist at Danville tomorrow and will talk about my options and who I should follow up with. I have a whole list of questions written down and have my first path report plus the nurse said she would have this last path reporot ready for me. I know athey will want to remove the rest of my lymph nodes in left groin and there was talk that they were not sure the margins were clear. I already have a six inch incision on my lateral left thigh. Thanks for the info. Best of luch to you with your battle with this terrible cancer.              Kim

      • November 1, 2011 at 11:58 am
      lhaley
      Participant

      I'm sorry that you've had to join us but hopefully you can find lots of info.  Having been introduced by wrong information definitely has started you on the wrong way. 

      We used to live in Delaware but not exactly sure of your distances.  Univ. of Penn has a few melanoma specialists and they do have different trials.  At this point you might be offered right now for them to offer a removal of the lymph nodes area.  You just need to take enough time to listen to different opinions.

      For today, go to the local hospital and get a hard copy of all pathology as well as a copy of scans that have already been done. That way when you decide were to go you also have a copy to take with you.  When you go to a major cancer center they will automaticallly request the pathology and they will re-read the last pathology.    just make sure that all paperwork has been signed so that they can refer info on.

      It will most likely take 2 weeks to get everything scheduled with a new melanoma specialist (part of that time is rereading the pathology). During that time start reading and listing the questions. 

      Don't panic.  Make education decisions.  Right now if 1 postivie node that should be putting you at stage 3A.  

      Linda

      stage 1A  1979

      Stage IV 2006

      presently brain met (and planning on beating this also!)

      • November 1, 2011 at 11:58 am
      lhaley
      Participant

      I'm sorry that you've had to join us but hopefully you can find lots of info.  Having been introduced by wrong information definitely has started you on the wrong way. 

      We used to live in Delaware but not exactly sure of your distances.  Univ. of Penn has a few melanoma specialists and they do have different trials.  At this point you might be offered right now for them to offer a removal of the lymph nodes area.  You just need to take enough time to listen to different opinions.

      For today, go to the local hospital and get a hard copy of all pathology as well as a copy of scans that have already been done. That way when you decide were to go you also have a copy to take with you.  When you go to a major cancer center they will automaticallly request the pathology and they will re-read the last pathology.    just make sure that all paperwork has been signed so that they can refer info on.

      It will most likely take 2 weeks to get everything scheduled with a new melanoma specialist (part of that time is rereading the pathology). During that time start reading and listing the questions. 

      Don't panic.  Make education decisions.  Right now if 1 postivie node that should be putting you at stage 3A.  

      Linda

      stage 1A  1979

      Stage IV 2006

      presently brain met (and planning on beating this also!)

      • November 1, 2011 at 4:06 pm
      Linny
      Participant

      I'm sorry to hear about your diagnosis. As time goes on you're going to find that this site is a wonderful resource.

      As far as Melanoma centers in PA go, I'm not 100% sure there is one in Hershey (unless things have changed). Just under a year ago I was in the same boat as you were and didn't notice one there. Listed below are the ones that I'm aware of:

      PENNSYLVANIA

      Abramson Cancer Center

      University of Pennsylvania
      16th Floor Penn Tower
      3400 Spruce Street
      Philadelphia, PA  19104
      Phone: (215) 662-6065
      http://www.penncancer.org/

      University of Pittsburgh Cancer Institute

      5150 Centre Avenue
      Pittsburgh, PA  15232
      Phone: (412) 647-2811
      Fax: (412) 648-6579
      http://www.upci.upmc.edu
      E-mail: pci-info@upmc.edu

      Fox Chase Cancer Center

      333 Cottman Avenue
      Philadelphia, PA  19111-2497
      1-888-369-2427

      Thomas Jefferson University

      111 South 11th Street
      Suite 4240
      Philadelphia, PA  19107
      1-800-JEFF-NOW or 215-955-8874
      http://www.kimmelcancercenter.org

       

      Another excellent alternative for you might be Johns Hopkins:

      MARYLAND

      Sidney Kimmel Comprehensive Cancer Center

      The Johns Hopkins University Melanoma Program
      601 N. Caroline Street, Suite 6066
      Baltimore, MD  21287
      Phone: (410 616-7660
      http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/

        • November 1, 2011 at 4:24 pm
        Linny
        Participant

        Well I'll be dipped! I just found information on line about the melanoma center at Hershey! It definitely won't hurt to check them out and seek an opinion from them as to your options. But I'd also check out some of the other melanoma centers to see what options are offered for you there.

        If you are Stage III, your options are limited when it comes to FDA approved drugs. However, a number of these places may have clinical trials for which you may qualify, which will give you more treatment options to choose from.

        There may also be one in Allentown. I do recall the onc at Abramson telling me about a trial there for ippilimumab (Yervoy).

        Linda

        • November 1, 2011 at 9:01 pm
        Kim41
        Participant

        Thanks Linda! I'll keep ya posted.

        • November 1, 2011 at 9:01 pm
        Kim41
        Participant

        Thanks Linda! I'll keep ya posted.

        • November 1, 2011 at 9:01 pm
        Kim41
        Participant

        Thanks Linda! I'll keep ya posted.

        • November 1, 2011 at 4:24 pm
        Linny
        Participant

        Well I'll be dipped! I just found information on line about the melanoma center at Hershey! It definitely won't hurt to check them out and seek an opinion from them as to your options. But I'd also check out some of the other melanoma centers to see what options are offered for you there.

        If you are Stage III, your options are limited when it comes to FDA approved drugs. However, a number of these places may have clinical trials for which you may qualify, which will give you more treatment options to choose from.

        There may also be one in Allentown. I do recall the onc at Abramson telling me about a trial there for ippilimumab (Yervoy).

        Linda

        • November 1, 2011 at 4:24 pm
        Linny
        Participant

        Well I'll be dipped! I just found information on line about the melanoma center at Hershey! It definitely won't hurt to check them out and seek an opinion from them as to your options. But I'd also check out some of the other melanoma centers to see what options are offered for you there.

        If you are Stage III, your options are limited when it comes to FDA approved drugs. However, a number of these places may have clinical trials for which you may qualify, which will give you more treatment options to choose from.

        There may also be one in Allentown. I do recall the onc at Abramson telling me about a trial there for ippilimumab (Yervoy).

        Linda

        • November 1, 2011 at 9:03 pm
        Kim41
        Participant

        Thanks for the great info and I will check it out.

        • November 1, 2011 at 9:03 pm
        Kim41
        Participant

        Thanks for the great info and I will check it out.

        • November 1, 2011 at 9:03 pm
        Kim41
        Participant

        Thanks for the great info and I will check it out.

      • November 1, 2011 at 4:06 pm
      Linny
      Participant

      I'm sorry to hear about your diagnosis. As time goes on you're going to find that this site is a wonderful resource.

      As far as Melanoma centers in PA go, I'm not 100% sure there is one in Hershey (unless things have changed). Just under a year ago I was in the same boat as you were and didn't notice one there. Listed below are the ones that I'm aware of:

      PENNSYLVANIA

      Abramson Cancer Center

      University of Pennsylvania
      16th Floor Penn Tower
      3400 Spruce Street
      Philadelphia, PA  19104
      Phone: (215) 662-6065
      http://www.penncancer.org/

      University of Pittsburgh Cancer Institute

      5150 Centre Avenue
      Pittsburgh, PA  15232
      Phone: (412) 647-2811
      Fax: (412) 648-6579
      http://www.upci.upmc.edu
      E-mail: pci-info@upmc.edu

      Fox Chase Cancer Center

      333 Cottman Avenue
      Philadelphia, PA  19111-2497
      1-888-369-2427

      Thomas Jefferson University

      111 South 11th Street
      Suite 4240
      Philadelphia, PA  19107
      1-800-JEFF-NOW or 215-955-8874
      http://www.kimmelcancercenter.org

       

      Another excellent alternative for you might be Johns Hopkins:

      MARYLAND

      Sidney Kimmel Comprehensive Cancer Center

      The Johns Hopkins University Melanoma Program
      601 N. Caroline Street, Suite 6066
      Baltimore, MD  21287
      Phone: (410 616-7660
      http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/

      • November 1, 2011 at 4:06 pm
      Linny
      Participant

      I'm sorry to hear about your diagnosis. As time goes on you're going to find that this site is a wonderful resource.

      As far as Melanoma centers in PA go, I'm not 100% sure there is one in Hershey (unless things have changed). Just under a year ago I was in the same boat as you were and didn't notice one there. Listed below are the ones that I'm aware of:

      PENNSYLVANIA

      Abramson Cancer Center

      University of Pennsylvania
      16th Floor Penn Tower
      3400 Spruce Street
      Philadelphia, PA  19104
      Phone: (215) 662-6065
      http://www.penncancer.org/

      University of Pittsburgh Cancer Institute

      5150 Centre Avenue
      Pittsburgh, PA  15232
      Phone: (412) 647-2811
      Fax: (412) 648-6579
      http://www.upci.upmc.edu
      E-mail: pci-info@upmc.edu

      Fox Chase Cancer Center

      333 Cottman Avenue
      Philadelphia, PA  19111-2497
      1-888-369-2427

      Thomas Jefferson University

      111 South 11th Street
      Suite 4240
      Philadelphia, PA  19107
      1-800-JEFF-NOW or 215-955-8874
      http://www.kimmelcancercenter.org

       

      Another excellent alternative for you might be Johns Hopkins:

      MARYLAND

      Sidney Kimmel Comprehensive Cancer Center

      The Johns Hopkins University Melanoma Program
      601 N. Caroline Street, Suite 6066
      Baltimore, MD  21287
      Phone: (410 616-7660
      http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/

      • November 1, 2011 at 5:14 pm
      fdess056
      Participant

      Hi, Kim.  Sorry about your recent diagnosis.  I''m now a stage  IV after almost 2 years NED.  I'm from New York and am prsently being treated here.  I don't know much about PA but I have an acquaintence on the Melanoma Research Board who recommended the Abramson Center at University of Pennsylvania in Philly.  Best of luck to you.

      Frank

        • November 1, 2011 at 9:08 pm
        Kim41
        Participant

        Thanks Frank, I was actually on the Abramson web site today and it looks good. Its about a 3hr drive to Philly for us but its doable(it that even a real word?). I would like to find someplace a litte closer.  Thanks so much. Good luck to you.   Kim

        • November 1, 2011 at 9:08 pm
        Kim41
        Participant

        Thanks Frank, I was actually on the Abramson web site today and it looks good. Its about a 3hr drive to Philly for us but its doable(it that even a real word?). I would like to find someplace a litte closer.  Thanks so much. Good luck to you.   Kim

        • November 1, 2011 at 9:08 pm
        Kim41
        Participant

        Thanks Frank, I was actually on the Abramson web site today and it looks good. Its about a 3hr drive to Philly for us but its doable(it that even a real word?). I would like to find someplace a litte closer.  Thanks so much. Good luck to you.   Kim

      • November 1, 2011 at 5:14 pm
      fdess056
      Participant

      Hi, Kim.  Sorry about your recent diagnosis.  I''m now a stage  IV after almost 2 years NED.  I'm from New York and am prsently being treated here.  I don't know much about PA but I have an acquaintence on the Melanoma Research Board who recommended the Abramson Center at University of Pennsylvania in Philly.  Best of luck to you.

      Frank

      • November 1, 2011 at 5:14 pm
      fdess056
      Participant

      Hi, Kim.  Sorry about your recent diagnosis.  I''m now a stage  IV after almost 2 years NED.  I'm from New York and am prsently being treated here.  I don't know much about PA but I have an acquaintence on the Melanoma Research Board who recommended the Abramson Center at University of Pennsylvania in Philly.  Best of luck to you.

      Frank

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