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

Anyone in the Nassau/Queens border on Long Island?

Forums General Melanoma Community Anyone in the Nassau/Queens border on Long Island?

  • Post
    s Brother
    Participant

    Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments… everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March.

    Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments… everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March. It's like all her doctors have forgotten her.

     

    Thanks all,

    Tom Mennin

    [email protected]

    Loading spinner
Viewing 5 reply threads
  • Replies
      Erinmay22
      Participant

      Hi Tom –

      I'm in the NJ area (live in Jersey City).  I just found out last week that I have melanoma in the lung.  They showed up on a CT scan I had done in January.  They did a biopsy early last week and confirmed melanoma – so stage 4 here also.  It's great that you're trying to look after your sister.  I see doctors at Sloan.

      Have they talked to her at all about treatment options?  I'm going to try to see if I'm BRAF positive.  My next appointment is Mar 22nd. 

      Thanks,

      Erin

      Loading spinner
        s Brother
        Participant

        Hi Erin,

        I am so sorry about your diagnosis. I'm hoping also that my sister is a candidate for B-RAF. I wish I had moved back to NY sooner to get everything underway for my sister. It's seems like you have a good jump on things.  It would be great if my sister had other patients to get in touch with. It's too bad you're in NJ and us on LI. 

        I wish you the best. Please write to me anytime.

        Tom

        Loading spinner
        s Brother
        Participant

        Hi Erin,

        I am so sorry about your diagnosis. I'm hoping also that my sister is a candidate for B-RAF. I wish I had moved back to NY sooner to get everything underway for my sister. It's seems like you have a good jump on things.  It would be great if my sister had other patients to get in touch with. It's too bad you're in NJ and us on LI. 

        I wish you the best. Please write to me anytime.

        Tom

        Loading spinner
        s Brother
        Participant

        Hi Erin,

        I am so sorry about your diagnosis. I'm hoping also that my sister is a candidate for B-RAF. I wish I had moved back to NY sooner to get everything underway for my sister. It's seems like you have a good jump on things.  It would be great if my sister had other patients to get in touch with. It's too bad you're in NJ and us on LI. 

        I wish you the best. Please write to me anytime.

        Tom

        Loading spinner
        s Brother
        Participant

        Hi Erin,

        I am so sorry about your diagnosis. I'm hoping also that my sister is a candidate for B-RAF. I wish I had moved back to NY sooner to get everything underway for my sister. It's seems like you have a good jump on things.  It would be great if my sister had other patients to get in touch with. It's too bad you're in NJ and us on LI. 

        I wish you the best. Please write to me anytime.

        Tom

        Loading spinner
      Erinmay22
      Participant

      Hi Tom –

      I'm in the NJ area (live in Jersey City).  I just found out last week that I have melanoma in the lung.  They showed up on a CT scan I had done in January.  They did a biopsy early last week and confirmed melanoma – so stage 4 here also.  It's great that you're trying to look after your sister.  I see doctors at Sloan.

      Have they talked to her at all about treatment options?  I'm going to try to see if I'm BRAF positive.  My next appointment is Mar 22nd. 

      Thanks,

      Erin

      Loading spinner
      kbc123
      Participant

      Hi Tom-

      I am sorry to hear about your sister and the issues she is having.  I am very new at this as well, just being diagnosed in January and not having a distant organ involved ( fingers crossed, knocking on wood..etc.) 

      My suggestion would be to get her to a Melanoma specialist.  You are in LI ( I am in NJ)  We do have great doctors that specialize in Melanoma right here in NYC and Pennsylvania.  I am going for a visit to NYU next week.  I would think of getting her an appointment ASAP in NY (since I assume that would be the closest for you).  I am sure Sloan Kettering or NYU will work with her insurance.  You just have to make the phone calls and start the ball rolling immediately.  If she is having symptoms such as the cough and dizziness, get her in there so they can start getting her back to health.

      You have my best wishes…I hope she is on the road to recovery soon. 

      Kathy

      Loading spinner
      kbc123
      Participant

      Hi Tom-

      I am sorry to hear about your sister and the issues she is having.  I am very new at this as well, just being diagnosed in January and not having a distant organ involved ( fingers crossed, knocking on wood..etc.) 

      My suggestion would be to get her to a Melanoma specialist.  You are in LI ( I am in NJ)  We do have great doctors that specialize in Melanoma right here in NYC and Pennsylvania.  I am going for a visit to NYU next week.  I would think of getting her an appointment ASAP in NY (since I assume that would be the closest for you).  I am sure Sloan Kettering or NYU will work with her insurance.  You just have to make the phone calls and start the ball rolling immediately.  If she is having symptoms such as the cough and dizziness, get her in there so they can start getting her back to health.

      You have my best wishes…I hope she is on the road to recovery soon. 

      Kathy

      Loading spinner
      kbc123
      Participant

      Hi Tom-

      I am sorry to hear about your sister and the issues she is having.  I am very new at this as well, just being diagnosed in January and not having a distant organ involved ( fingers crossed, knocking on wood..etc.) 

      My suggestion would be to get her to a Melanoma specialist.  You are in LI ( I am in NJ)  We do have great doctors that specialize in Melanoma right here in NYC and Pennsylvania.  I am going for a visit to NYU next week.  I would think of getting her an appointment ASAP in NY (since I assume that would be the closest for you).  I am sure Sloan Kettering or NYU will work with her insurance.  You just have to make the phone calls and start the ball rolling immediately.  If she is having symptoms such as the cough and dizziness, get her in there so they can start getting her back to health.

      You have my best wishes…I hope she is on the road to recovery soon. 

      Kathy

      Loading spinner
        s Brother
        Participant

        Hi Kathy,

        Sorry to hear about your diagnosis. I'm sure this must be very scary for you and I really appreciate your reply.

        I will try to get my sister to Sloan Kettering in NYC or a melanoma specialist. I think that's great advice.

        Thanks for writing and good luck.

        Tom

        Loading spinner
        kbc123
        Participant

        Thanks Tom and I hope you do call and make an appointment.  You will at least have peace of mind for your sister and yourself.

        If you check under Patient Resources above, you will be able to search for Melanoma Treatment Centers that are in NY.  There may be somewhere else you might want to go.

        Good luck to you both.

        Loading spinner
        kbc123
        Participant

        Thanks Tom and I hope you do call and make an appointment.  You will at least have peace of mind for your sister and yourself.

        If you check under Patient Resources above, you will be able to search for Melanoma Treatment Centers that are in NY.  There may be somewhere else you might want to go.

        Good luck to you both.

        Loading spinner
        s Brother
        Participant

        Hi Kathy,

        Sorry to hear about your diagnosis. I'm sure this must be very scary for you and I really appreciate your reply.

        I will try to get my sister to Sloan Kettering in NYC or a melanoma specialist. I think that's great advice.

        Thanks for writing and good luck.

        Tom

        Loading spinner
      kbc123
      Participant

      Hi Tom-

      I am sorry to hear about your sister and the issues she is having.  I am very new at this as well, just being diagnosed in January and not having a distant organ involved ( fingers crossed, knocking on wood..etc.) 

      My suggestion would be to get her to a Melanoma specialist.  You are in LI ( I am in NJ)  We do have great doctors that specialize in Melanoma right here in NYC and Pennsylvania.  I am going for a visit to NYU next week.  I would think of getting her an appointment ASAP in NY (since I assume that would be the closest for you).  I am sure Sloan Kettering or NYU will work with her insurance.  You just have to make the phone calls and start the ball rolling immediately.  If she is having symptoms such as the cough and dizziness, get her in there so they can start getting her back to health.

      You have my best wishes…I hope she is on the road to recovery soon. 

      Kathy

      Loading spinner
Viewing 5 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

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

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