Desmoplastic spendel cell melanoma

Posted By
Ronnieandbeth2018
12/5/2018 1:10pm
View other posts by
Activity
Replies: 10

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

Go check out the two post I did for you 11/25/18...  they have some good suggestions and possible contacts

I don't know how to do back to that date to find them Robbie

Beth Borum Ketchum

Also Beth, here is the other post.......   you can find old post by either going to bottom of page and scrolling through each page. but for now, click on the below link that will take you right to it

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

Thank you. We read those post. But different than Ronnie's. We see Dr tomorrow. Will find out more.

Beth Borum Ketchum

Thank you. We read those post. But different than Ronnie's. We see Dr tomorrow. Will find out more.

Beth Borum Ketchum

Hello Robbieandbeth, I was diagnosed with Desmoplastic Melanoma back in 2009. My melanoma was amelanotic (colorless). It had a spindle cell component. (Fibrous). The size was 4.5mm. It was Neurotropic as well. It's a very rare subtype. Went through three Oncologists before I found one that had seen it. Hopefully Bubbles will chime in as she is the goddess of info and has a great blog. Check my bio for my journey. Feel free to contact me if in need of more information on our type. Best, Paul

Hi Paul. This is Beth Ronnie's wife. What State are you in. And where were you treated. Did yours metastasize. Thank you for any info you can give me

Beth Borum Ketchum

Hello Beth, I am in Calif. I am treated at John Wayne cancer institute (Providence St.Johns) Santa Monica. Original tumor was removed 2009. I was staged at 2b and remained that way till 2015. Had a recurrence jaw,jawbone. Stage 4. Did immunotherapy and have been in remission for 2.5 years. You can check my bio (click my name) for my detailed journey and get my contact info to chat privately if you want? You can post a new topic for a Melanoma specialist in your neck of the woods and people will respond with suggestions. Best to you and Robbie, Paul