› Forums › Mucosal Melanoma Community › Help with stage IVb mucosal melanoma
- This topic has 6 replies, 3 voices, and was last updated 5 years, 10 months ago by jyc.
- May 7, 2017 at 3:43 am
Looking for advice, encouragement, clinical trail opportunities, resources, and support to advocate for my Dad who was just diagnosed with stage IVb mucosal melanoma. I know my list of needs are broad, obviously I'm struggling with where to start.
As of receiving the diagnosis one week ago, he has only seen his ENT. He will have his first visit with the oncologist on Monday, May 8th. I have looked into targeted and immuno therapy options, but all of the information can be so overwhelming. At this point, it would be nice to take a break from reading published clinical trial results and reading FDA drug information and connect with actual human beings.
thank you for any help you can provide!
Background- My dad was diagnosed with Stage IV B mucosal melanoma in April of this year, 2017. He had a CAT scan in January 2017 that was unremarkeable. His doctor performed a sinus clearing procedure when the antibiotics were ineffective, and melanoma cells were found in his biopsy report. The MRI revealed the tumor has spread back to the edge of the dura, filled his sinuses, to his upper forehead and down to his gums. It is respectable, but resection is not recommended because the margins aren't clean. The only "good" news received is that as of the first week in May, it has not yet metasticized in his organs or a lymph node.
- May 7, 2017 at 6:02 pm
Sorry you and your dad are dealing with this. Melanoma treatment has come a long way since I was diagnosed in 2003 and has made even greater leaps since 2010 when I advanced to Stage IV. I was treated for brain and lung mets with SRS to brain, surgery to lung, all followed by immunotherapy. Unfortunately, mucosal melanoma doesn't behave exactly like cutaneous melanoma. Additionally, for a long time, mucosal melanoma patients were excluded from trials so we have less info about that particular melanoma type. However, if you click this link…you will see a post I made where I roughly broke down treatment options for a newly diagnosed Stage IV melanoma patient: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/just-diagnosed-stageiv-left
If you are interested, you can search my blog using the top left search bubble for specifics re mucosal melanoma as well as do a search of this forum as there are several folks dealing with it (or with family who have it) currently.
Hope that helps. I wish you well. Celeste
- May 8, 2017 at 2:36 am
The news that so far there is no disease detected in other parts of his body is great!
My dad also has mucosal melanoma originating from the sinus and was diagnosed back in 2007. He's been through multiple surgeries, nice years of good scans and a few recurrances along the way. He did progress from Stage 3 to 4 recently but so far he's tolerating treatment well and still enjoying retired life. 🙂 I found this forum on day one of my dad's diagnosis and have been coming back everyday since. This is truly one of the richest sources of knowledge, experience and support for the melanoma survivor community (you became a survivor when you receive the diagnosis).
Is your father being treated at a major cancer center? I think one of the biggest factors that played into my father's treatment is that he's being treated at a major cancer treatment center, MDAnderson (we live in Houston, TX). Mucosal melanoma is exceedingly rare (1% of all melanoma) and the oncologists that have experience treating it are just as rare too. Some hopsitals have relationships with centers like MDAnderson and will work with your oncologist on treatment plans. Larger centers also have specialists in other disciplines like head and neck surgery, oncology and radiology which could be involved in his treatment plan. If he's not being seen at a major cancer center, it would be beneficial to look into getting referred into one. I know MDAnderson has a self-referral page on their website.
- May 8, 2017 at 2:58 am
Thank you thank you! He is not being seen at a major center, but I'm working on it- I found a melanoma specialist in my city and called them for a second opinion. It's he expense he's worried about, and navigating the insurance hurdles that come along with trying to go out of network. It can be such a cold system.
May I ask, if there was one think you wish you had known in order to be more proactive when your dad was first diagnosed, what would it have been?
- May 8, 2017 at 4:25 am
From what I remember, I don't think we really knew a lot about the impact of his diagnosis at the time we found out. We knew it was cancer, and we knew that melanoma was a form of skin cancer that that was about it. My dad's ENT spent some time as a fellow at MDA and immediately referred us into MDA as soon as he got the results of the biopsy (he found the lesion in the sinus) and a week later we were at the consultation with the head and neck surgeon at MDA. Things moved very, very quick luckily so we are grateful that he got treatment sooner. Another thing we are grateful for is the fact that my dad had really good medical insurance and his company had a nice STD and FMLA policy. The company also provides good insurance as a retirement benefit for which we are immensely grateful for.
I'm also gratefult for finding this forum. It really has helped us get more perspective, knowledge and discover that we are not alone on this journey.
I'm also grateful about all the new treatments that have emerged within the last 5 yrs, there have been more breakthroughs in treatment than in the last 20yrs and there are more in the pipeline.
Tagged: mucosal melanoma
- You must be logged in to reply to this topic.