Stage 4 melanoma, no primary site

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Stage 4 melanoma, no primary site

by lennonje on Mon Apr 18, 2016 01:16 PM

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Hi,

I'm new to this site. My mother in law has recently been diagnosed with stage 4 melanoma. She has a tumour (approx 5cm) in her scapula, which is going to be removed by surgery. She's had two full body checks by a dermatologist to try and find the primary site (none found). She's also had a CT scan, an MRI and ane eye exam, all which came back clear. Her LDH levels are normal and she is not BRAF mutated. She is going to have an PET scan this week so we're hoping that will come back clear too. I'm so confused why they are calling it a stage 4 tumour if they can't find it anywhere else.

I'm looking for anyone who has had a similar experience or may be able to offer any advice in terms of treatment. Any help/advice would be greatly appreciated!

Thanks

RE: Stage 4 melanoma, no primary site

by bjpaten on Wed May 04, 2016 11:24 PM

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Get a second opinion.  I am a stage 4 Mel. survivor and it doesn't add up. 

Blessings,

Brian

RE: Stage 4 melanoma, no primary site

by ilikepralinen on Mon Jun 06, 2016 08:25 PM

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Hello Lennonje,

even i had a Metastase in my Brain.

They havent found a Primary. My blood, CT was clear. They did Brachytherapy radiation in 2014.

Unfortunately it increased its size this year. Stereotactic radiation was done again.

3 weeks ago, i falled down due to an epilepsy attack. They found 2 new Lesion in Brain and one in Spine.

I will be beginning with Tafinlar+Mekinist therapy this week.

Did you get a Second Opinion????

RE: Stage 4 melanoma, no primary site

by Llyrell on Wed Jun 08, 2016 10:09 PM

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My husband initially had an in situ spot removed from his temple via Mohs. He then had full body checks every 3 months for almost two years. Unfortunately he had a seizure and it was discovered that he had Stage 4 melanoma. The dermatologist had the pathologist go over all records in depth to see if by chance the initial melanoma had been regressive but it wasn't. They were unable to determine the primary site. So yes, it happens. This was back in 2010, and he didn't have the Braf mutation. There are many new options/drugs available now which will give her a much better chance. Praying for your family.

RE: Stage 4 melanoma, no primary site

by norjud on Thu Dec 15, 2016 03:05 PM

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So sorry for your mom.  What part of the country did she live the most?

Did she smoke?  How much does your mom weigh and height?

My brother died 13 years ago at age 49.  they could not find the host, but he was fair skin and blue eyes. Not sure the docs really looked that hard. Also my brother retired Air Force would NOT go to doc for any reason his whole life.

RE: Stage 4 melanoma, no primary site

by DawnSpiering on Wed Oct 18, 2017 08:28 AM

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On Apr 18, 2016 1:16 PM lennonje wrote:

Hi,

I'm new to this site. My mother in law has recently been diagnosed with stage 4 melanoma. She has a tumour (approx 5cm) in her scapula, which is going to be removed by surgery. She's had two full body checks by a dermatologist to try and find the primary site (none found). She's also had a CT scan, an MRI and ane eye exam, all which came back clear. Her LDH levels are normal and she is not BRAF mutated. She is going to have an PET scan this week so we're hoping that will come back clear too. I'm so confused why they are calling it a stage 4 tumour if they can't find it anywhere else.

I'm looking for anyone who has had a similar experience or may be able to offer any advice in terms of treatment. Any help/advice would be greatly appreciated!

Thanks

Could this be a reacurring disease? I also am stage IV melanoma and I didnt have a primary. It started in a lymph node in my neck and after a year of Interferon metatastized to my lungs. Took Yervoy and it almost killed me but now 3 years later my mets began growing and Im on my second Keytruda treatment. Even though the Yervoy was harsh my tumors stopped growing, so it worked til now. I would say another opinion is in order for your mom in law. but dont put off treatment either in the least have the oncologist explain his reason for the staging.

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