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stage 4 melastatic melanoma

Posts: 1
Joined: Apr 2019

Hello my husband and i are new to the page, He was diagnosed in 2012 with an abnormal mole we had noticed change over a years time . we went in and the removed it pie cut and he was cleared. went in for his check ups and everything was great until 9 weeks ago. my husband noticed a lump a small one forming under his left armpit area when taking a shower . we made an appointment,  doctor looked and messed with it and said its just a cyst, if it becomes bothersome they can surgically remove it. we went home and within 4 days time it was the size of a nickel. so we made another appointment and she perscribed antibiotics and he took them  it started growing to the size of a 50cent peice in a matter of days. so we went to the doctor who had done his latest surgery in 2012 and he had us in for surgery and biopsy confirmed it was cancer. but then we had to do the pet scan and that revealed small masses but masses everywhere in his hip and all over including in his heart. they pulled us in to the room to tell my husband , my best friend , the father of our 7 children to just take time off work and hold us and get his financial stuff in order, because they had never seen it so bad and wasnt sure if he was going to wake up the following day. Thats The day We decided we cant except what just floored us. we have since started treatment at Ctca in Arizona and they have been amazing. they started targeted therapy with braftovi and mektovi  and we go back the 14th of this month( next week) to do a scan to find out whats going on inside . anyone had these meds ?  or simular stories KEEPING THE FAITH. SIDE EFFECTS HAVE BEEN constipation

Posts: 27
Joined: Sep 2018

I am so sorry to hear about your husband. I have had BCC and the MOHS surgery but I have not had Melanoma. I just wanted to offer my support and prayers and please post back! It sounds like they are doing great things for him at the CTCA. :)

Shar 48
Posts: 1
Joined: Jun 2019

I am a positive thinker with ms.I went to my dermatology a week a go he biopsy a spot it is melanoma.My sister suggested Mohs surgery. Is anyone familiar with that.I am looking for a doc in the south fl area.I am concerned because recently I have lost 10 lbs.I am thinking positive.Would welcome any advice.Thank you.

Posts: 27
Joined: Sep 2018

MOHS is a procedure that takes most/part of the day. You go in.... they numb the skin and take it layer by layer. Each layer is examined under the microscope. If the edges are clean, then you are done. If they are not clean, you have to get more layers taken. In the waiting period, they have snacks, drinks, TV and magazines. Plan to spend 4-6 hours or longer if you have several layers removed. 

RobertReny's picture
Posts: 4
Joined: Jul 2019

Researchers are using a nuclear technique called PET (positron emission tomography)  this technique targets melanin pigment that exists in most lesions of melanoma. Click on the link and read the entire study.

The study included six healthy individuals who were injected with 18F-P3BZA and then underwent whole-body PET/CT scans and blood tests for the assessment of biodistribution, pharmacokinetics, and radiation dosimetry at several junctures after injection. Five patients with suspected melanoma had received 18F-P3BZA PET/CT imaging at 10 minutes and 1-hour post-injection. Also, to compare the diagnostic ability, all patients received 18F-fluoro-2-deoxyglucose (18F-FDG) PET/CT scans on the third day.


The findings showed that 18F-P3BZA is quite safe and delineates melanoma tumors The researchers are using a nuclear technique called PET (positron emission tomography)  this technique targets melanin pigment that exists in most lesions of melanoma. 

Soldier of Love
Posts: 10
Joined: Aug 2019

Hello,  Stage 3 Squrmous Cell Carnosma here. I had many test test done qwith no real diffinited answer.  After the PET scan it was clear that I ha cancer but it was still incorrct as the they type and stage.  I elected to have surgery an what thety found out was a completly different type and a different stage.   The PET is whjat you want.


Good luck and God Bless

Posts: 1
Joined: Jul 2020

My husband was recently diagnosed with Stage 4 Melanoma (he is 71 yrs old). He took a walk and when he arrived home I thought he had a stroke.  He was hunched over and shuffling and his mouth was crooked.  I took him to the ER and after a CT the brain lesions were there.  No other signs prior and he has never had any skin cancer issues.  In fact, no melanoma has been found.  Only the lesions in the lungs/brain show they are Melanoma cells.

He has lesions in his lungs and over 20 lesions in his brain.  He took 2 oral drugs for 8 weeks and then had an MRI and CT scan.  The oral drugs reduced the size of the lung lesions but the brain lesions increased in size and added additional ones.  He then went through whole-brain radiation (10 treatments for a total of 3000 cGy).  He will begin an infusion combo next week of Nivolumab / Ipilimumab once every 3 weeks.

He didn't have too many side effects from the oral drugs except sleepiness and remembering to take the drugs.  The WBR has been another journey.  He doesn't want to eat or drink and is great in the mornings but by 11 am he is done.  His motor skills are deteriorating which has always been the issue.   He shuffles when he walks and needs to hang on to something to get where he wants to go.

I would love to hear from anyone else who is in the same situation.  Most of the posts are from a year or more ago?  With all the new advances in Melanoma treatments, I would love to hear from those currently or recently undergoing similar issues.   Thank you.

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