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.

Desmoplastic (spindled cell ) Melanoma

Forums Cutaneous Melanoma Community Desmoplastic (spindled cell ) Melanoma

  • Post
    Raco
    Participant

    Anyone familiar with Desmoplastic (spindled cell ) Melanoma

    and what does it mean.  Iam helping my sister get more info Asher Husband now has this diagnoses 

    thanks for any input?

    RACO (Robbie Borum)

    Loading spinner
Viewing 2 reply threads
  • Replies
      ed williams
      Participant

      If you go to the 23:50 min mark of this video by Dr. Martin Mihn of Harvard he talks about some of the variation of melanoma including Desmoplastic, pretty complicated stuff and probably should be left to Oncologist to explain.https://www.youtube.com/watch?v=2wmeyNjFKQw

      Loading spinner
      Casitas1
      Participant
      Hi Robbie, I was diagnosed with Desmoplastic Neurotropic Melanoma on my bottom lip in 2009. My path report was almost identical to your brother in law’s. 4.5 mm tumor. Was staged at 2b rather than 2 because of size. Had some pretty gnarly surgeries including a lip switch surgery that replaced 1/2 lower lip with 1/4 upper lip. This subtype of melanoma is locally aggressive. I was disease free for five year’s before I recurred. You can check my bio for details. Would be glad to help with any details or questions you may have. I am posting from my phone because the darn reCAPTCHA locked me off my PC.(anybody know how to fix that without recreating bio?). Best to you brother in-law,. Paul

      Loading spinner
        Raco
        Participant

        Paul, thank you for the information.  My sister watched the You Tube video that Ed Williams suggested: on my post Desmoplastic (spindled cell ) Melanoma ed williams – (11/25/2018 – 6:55pm)  He said::::

        """If you go to the 23:50 min mark of this video by Dr. Martin Mihn of Harvard he talks about some of the variation of melanoma including Desmoplastic, pretty complicated stuff and probably should be left to Oncologist to explain.https://www.youtube.com/watch?v=2wmeyNjFKQw  """

        My Sister listened to the Video and is now very worried about where their journey will take them. 

        So she is now trying to registar on Melanoma.org….   she still has not received her Conf. Email so I told her to call the 800 Number and they should be able to help…. 

        You may also want to try and call and see if they can help you through your PC trouble. They are very friendly and helpful. 1-800-673-1290 you can leave a message and someone will call you back.

        I am also registared with Melanoma.org as I was diagnosed with Stage 3 Melanoma and had several surgeries and not on my 18th treatment of 26 Opdivo.  on the down slope now,  8 more to go.

        Again, thank you for your imput and wish you all the best.

        Loading spinner
        MelanomaMike
        Participant

        Hi Casitas1, you menioned problems with getting on here at MRF on yer computer {modem type} me to, i quit using my computer to get on like months ago, phone & Tablet has no problem..not sure what ya meant about "Not recreating your "bio", using my phone or tablet, everything stays the same from when i used my computer "before" my reCAPTCHYA problems started…

        Loading spinner
        Raco
        Participant

        Hi Paul:  my sister finally was able to sign up…… if you want to look her post up, I copied her page below.

        Thanks Paul

        Ronnieandbeth2018's

        picture
        Desmoplastic spendel cell melanoma
        Ronnieandbeth2018
        12/5/2018 – 1:10pm
        Replies 0
        My husband was diagnosis in October of this year with desmoplastic spindle cell melanoma of the face. It was 4 mm deep. waiting for results of MRI of the head and a full body pet scan to come back. lymph node biopsy of the face was inconclusive. we live on the east coast has anyone had this type of melanoma and can you tell me something about it. Our oncologist has not treated it and wants to send us to Duke University for treatment. Thank you for any info

        Beth Borum Ketchum

        Loading spinner
      MMH
      Participant

      Hello to you. My pathology also contained the term spindled, and was called spitzoid. If this is the same, I do have some information. I am 44 and had a .6mm removed from my right upper arm in August. 

      Loading spinner
Viewing 2 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.