Desmoplastic (spindled cell ) Melanoma

This topic has 6 replies, 5 voices, and was last updated 5 years, 4 months ago by Raco.

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- November 25, 2018 at 10:54 pm
- Quote
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)

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- - November 25, 2018 at 11:55 pm
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  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
- - November 26, 2018 at 5:19 am
  - Quote
  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
  - November 26, 2018 at 1:57 pm
    
    Quote
    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.
  - November 29, 2018 at 7:30 pm
    
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    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…
  - December 5, 2018 at 7:40 pm
    
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    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
- - November 29, 2018 at 4:31 pm
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  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.