Douglas Lowell, Find a Cure Panel
I’m here with the awesome melanoma advocate and friend, Lori Michell.
Most people know that melanoma is a type of skin cancer. But can you give a little more texture to what melanoma is and how it fits into the general umbrella of skin cancer.
Lori Mitchell, Mucosal Melanoma patient and advocate
I have mucosal melanoma which is in the mucus. Skin cancer or melanoma is caused by many factor one being the sun
Mucosal melanoma they haven’t determined the cause. I believe it is stress related possibly ultra violet rays from lights at work or from swimming in a public pool and the chlorine which is a carcinogen.
Also the gut flora is something to look at. I was under a lot of stress at work the year before I was diagnosed.
I went to obgyn and gastroenterology for acid reflux and a lot of pain to try and figure out what to do.
I ended up taking acid relax meds and another medicine to help stop the pain.
6 months later I had pain in my eye.
The doctors did not know how long it has been there but the otorologist believes the pain was when the tumor was attached to my pully which was about a month or two after I spent a week teaching my grandaughter how to swim. She was 6.
Chlorine is known to be carcinogenic and if someone would take the time to ask patients about their habits
in a pool and or working routine with the lighting overhead we might find what causes mucosal melanoma
I lean towards chlorine maybe it’s in the water because that’s what water districts use to kill germs.
I know for sure that’s what our water district uses because they recycle water here in the desert.
Douglas Lowell, Find a Cure Panel
Let’s rewind to the beginning. How were you feeling? What symptoms did you manifest BEFORE diagnosis?
Lori Mitchell, Mucosal Melanoma patient and advocate
Some of the treatments for melanoma have helped patients with mucosal melanoma
I was having pain in my eyelid like a sty. I didn’t see anything in my eye. But when I took a shower and cleaned the tile and glass it required me to look up high and low and that’s when I had extreme pain
I went to my GP and he thought it was a sinus infection. I had several sinus infections in the past and never had this type of pain.
I took the antibiotics and it just kept getting worse. I saw my ophthalmologist and he didn’t see anything in my eye and suggested I go see my ENT. I started smelling something burning all the time like when the heat first comes on in the winter. I couldn’t see my regular ENT for 8 weeks because I had been getting kenolog shots every year for allergies so I didn’t get a sinus infection. My GP recommended a different ENT which I could get into in 6 weeks. This is all started September 19, 2017. I finally saw the ENT the Monday after thanksgiving.
When I saw him my appt was at 2:30 but I didn’t see the doctor until after 5:00. The doctor finally came in and asked me what the problem was. He never looked into my sinuses but asked me what I had done. I told him I took antibiotics for sinus infection and saw ophthalmologist. He said I don’t know what you want me to do. I told him I wanted a CT scan and MRI ordered stat.
While I was waiting to see ENT I went to AZ for thanksgiving and the pain was much worse when I tried to play pickleball with my dad because I would bend over to pick up the ball. My dad thought it was a blockage and had me use steam and Vicks to see if it would break loose. Obviously it didn’t
I started having pain in my neck and by my ear by the time I saw the ENT on Monday following thanksgiving
Douglas Lowell, Find a Cure Panel
Crazy that you had a demand a MRI from a doctor when you were in such pain.
Lori Mitchell, Mucosal Melanoma patient and advocate
The doctor. gave me the order for the MRI and Ct scan because I insisted . Told him I will tell you anything to get the scans.
I sent the order to my insurance company from work the next day and then called them. The needed clinicals which I called the doctor’s office and demanded.
Douglas Lowell, Find a Cure Panel
How did you know to be so proactive? Insistent? Did you have background in medical? Healthcare?
Lori Mitchell, Mucosal Melanoma patient and advocate
The scans were scheduled the next day. Wednesday night at500 pm. Across town in Henderson. I had the scans and before I got home the radiologist had called my doctor and my husband called me and told me the doctor wanted to see me with the results of my scans at 700 am the next morning. I knew then it was cancer of some kind
I worked in legal for 45 years from 1976 -2018
My dad was a cardiologist PA and my husband had squamous cell carcinoma in he’s neck in 2000
Douglas Lowell, Find a Cure Panel
Important background. Those less educated and cannot advocate for themselves sadly receive worse prognosis.
Lori Mitchell, Mucosal Melanoma patient and advocate
When I saw the ENT he told me it was bad news. I told him. Just show me the pictures and what we have to deal with. The radiologists locally Steinberg said it was squamous cell carcinoma or neuroblastoma. I took the report and pictures to my GP to get blood work and a chest X-ray. The ENT told me I needed a neurosurgeon to remove the tumor but he could do a biopsy. I called my dad’s cardiologist he worked for who was a family friend and did a stress test on Friday following my scans. The ENT was going to do the biopsy n Tuesday but I couldn’t get into see a neurosurgeon. I faxed my reports to 6 or 8 top neurosurgeons in Vegas and followed up with phone calls. No one would see me be for the second week in January. It was like over a month away. I knew I would die if I had to wait to see one of them.
I called UCLA where I had gone in September for a 2nd opinion because I tore my ischial tiberosity (complete avulsion) the previous year water skiing and wanted a second opinion because the orthopedic I saw here in Vegas said no surgery and it wasn’t healing.
When I called neurosurgeon Doctor Bergsneider they asked me to upload images and they scheduled an appt the next week on Thursday. I cancelled my biopsy locally because I knew I didn’t have a neurosurgeon here
Lori Michell, Mucosal Melanoma patient and advocate,
We drove down to UCLA on Wednesday for an appt early Thursday. When we arrived at the hotel the doctor’s office called and said he couldn’t see me. There were fires in LA and surrounding area and the doctor couldn’t get in. I went up to the office the next day and told them I had to see someone. They couldn’t help me. So I walked across the street with my labs stress test and chest X-ray in hand. Nobody was in the emergency room because of the fires. I had a dozen doctors looking at me including ophthalmology, neurosurgery and several ENTs
Douglas Lowell, Find a Cure Panel
You definitely an eye for detail, Lori.
Lori Mitchell, Mucosal Melanoma patient and advocate
CT scans and MRIs were ordered until after midnight that night and I started having problems because I hadn’t eaten anything since early morning. I’m hypoglycemic and my sugar was dropped. They gave me some sugar in the IV and my biopsy was done on Friday.
He next day I did ultrasounds to see if the cancer was in my lymph nodes which it wasn’t and did some more eye test with ophthalmologist. I was drugged out of my mind because they gave me so. Much pain medicine I couldn’t walk
I thru it all away when I went home because it caused me such bad constipation I was in so much pain in the stomach.
A week later Dec 5th. Received the call at home. My ENT said he had good news and bad. I didn’t have squamous cell carcinoma or neuroblastoma but I had mucosal melanoma which may require me to lose my eye. I told him take my eye. My eye or my life an easy answer.
Douglas Lowell, Find a Cure Panel
Had you even heard of mucosal melanoma? Had anyone even mentioned it during this odyssey?
Lori Mitchell, Mucosal Melanoma patient and advocate
I had to tgo back to UCLA to see a different ent who would be doing my surgery and schedule everything. We needed two ENTs a neuronal an ophthalmologist
Never
Douglas Lowell, Find a Cure Panel
During this process, had you hit the internet hard and able to turn up anything?
Lori Mitchell, Mucosal Melanoma patient and advocate
Had done some research before I saw the ENt which is why I thought it was cancer because of the burning smells
But never heard mucosal melanoma.
I had to wait from December 20th when I saw new ENt until January 10 2018 for my surgery. I was concerned it was going to invade my brain and I didn’t want that to happen.
The new ENt told me there was a possibility that he could save my eye depending if the tumor was attached to my eye. I had an MRI or Ct scan here in Vegas January 2nd to see if that was true. It appeared that the tumor wasn’t attached but when I showed up for surgery the head of Head and neck ENT decided he was taking my eye and not sparing it because he thought it was best. My surgeon disagreed with him and the argued outside my curtain.
They could have done the surgery two ways. Open my skull and take the tumor or take my entire eye and all its parts put in a flap and have a better chance. Ultimately the right decision was made because the tumor was attached to the pulley you have in your body that make your eye open and close. If they didn’t take my eye I would have had double vision
Douglas Lowell, Find a Cure Panel
Where did you find your bravery and center during this ordeal, Lori Michell, Mucosal Melanoma patient and advocate?
Lori Mitchell, Mucosal Melanoma patient and advocate
My surgery was 13 hours long. My mom and her boyfriend my dad and his wife and my husband were all there with me
I dealt with it like it was a case at work. I never cried just what do I have to do to get better
Douglas Lowell, Find a Cure Panel
Amazing fortitude.
This story is so scary. I think to all the less edified patients and what their results would have been.
Lori Mitchell, Mucosal Melanoma patient and advocate
When I woke up from surgery saw a light like I was in a tunnel. I believe it was God showing me I’m going to be okay.
I’m a bull. Warrior as we call ourselves.
Douglas Lowell, Find a Cure Panel
Warrior status earned.
Lori Mitchell, Mucosal Melanoma patient and advocate
When I got married the first time the preacher told me what my name meant. It means warrior. Real name Lorraine The preacher told everyone in the church you want to fight with every one and my husband name was Randall and his name meant shield
Douglas Lowell, Find a Cure Panel
That’s funny.
Lori Mitchell, Mucosal Melanoma patient and advocate
I asked for my mom when I woke up and the only thing that hurt was my right arm. I was numb on my face and no one took picture of this terrible piece meat that was in place of my eye. They cut my neck from my ear to my jaw so they could put in a vein for blood flow for my flap. They cut my left leg from my knee to my thigh for the muscle for the flap. But the IV that they had attached to wood or something was hurting my arm
The physical therapist came in the next day and wanted to get me up to walk. I tried to stand and just shook because of all the muscle they took. She told me if you want to walk out of here you need to start physical therapy
The next day she came back for my physical therapy but without a walker. My mom went and found one on another floor because I was in icu. It wasn’t easy to get up but I did it. I didn’t have a mirror in my room so I didn’t see how bad the flap was for a week but when I got moved to my own room I saw my face and want very happy but knew I was alive. I was walking like a champ and calling the nurses every morning because they wouldn’t let me walk without anyone. I didn’t use a walker the last week except to have the nurse hold it.
Lori Mitchell, Mucosal Melanoma patient and advocate
My surgeon was in shock when I returned to see him a couple weeks after I left the hospital.
I forgot a piece of my story. When I was waiting to go for surgery they put this silly caps on y head and I had a fever. My temperature is normally 96.8 not 98.6. I told them it was because I have so much hair. So they took the silly cap off and took my temperature again and it went down to normal.
I went back to work on the 29th of January 2018. A week after I returned home
Douglas Lowell, Find a Cure Panel
That’s stunning. What did people at work say?! Were you wearing an eye patch?
Lori Mitchell, Mucosal Melanoma patient and advocate
I knew I had to work until I was 60 to have insurance the remainder of my life so I went back to work. I received clearance from my doctors stating if I got tired I could go home. So I worked from700 am until 300 pm every day for a month. The end of February I had radiation SBRT 5 treatments in total. My body did not like the radiation as
Yes. I purchased one at CVS when I was down at UCLA.
They all thought I was crazy but they knew when I make up my mind to do something I do it. I am a warrior.
Douglas Lowell, Find a Cure Panel
Indisputably so.
When you were finally dxd, it was at stage 4, I assume?
Are most people dxd stage 4 for mucosal?
Lori Mitchell, Mucosal Melanoma patient and advocate
I got vomiting sick from the first treatment of radiation so instead of doing 5 days in a row we did every other day Monday and Wednesday and then returned the following week
Yes it was stage 4.
Most people are stage 4 because it is misdiagnosed so much
Douglas Lowell, Find a Cure Panel
Going back to your definition – that mucosal means mucus – that means initial manifestation is always nose, ear or eye?
Lori Mitchell, Mucosal Melanoma patient and advocate
No.
Douglas Lowell, Find a Cure Panel
Where can it originate?
Lori Mitchell, Mucosal Melanoma patient and advocate
It is also in the vagina and anus.
It can also be in the mouth.
Douglas Lowell, Find a Cure Panel
What’s the gender breakdown?
Lori Mitchell, Mucosal Melanoma patient and advocate
More women then men.
And more Asians than whites.
Douglas Lowell, Find a Cure Panel
Interesting. Why would that be?
Is it congenital?
Lori Mitchell, Mucosal Melanoma patient and advocate
I think it is.
Douglas Lowell, Find a Cure Panel
Yes . . why would Asians have a higher percentage of it than whites or other races?
Lori Mitchell, Mucosal Melanoma patient and advocate
Because of the pigmentation
When you lose the pigmentation like vilitigo your chances of returning is much better
Douglas Lowell, Find a Cure Panel
Do you think that doctor awareness of mucosal is greater today than it was when you were diagnosed 7 years ago?
Lori Mitchell, Mucosal Melanoma patient and advocate
No.
Douglas Lowell, Find a Cure Panel
Given this amazing story give me some recap that should be on the internet of a summary symptoms that should trigger some mucosal melanoma awareness?
Lori Mitchell, Mucosal Melanoma patient and advocate
My melanoma specialist in Vegas believes I am in in remission but melanoma doesn’t go into remission it is only no evidence of disease
Douglas Lowell, Find a Cure Panel
in a few sentences.
Lori Mitchell, Mucosal Melanoma patient and advocate
Me a few sentences?
Douglas Lowell, Find a Cure Panel
I know it’s hard.
Lori Mitchell, Mucosal Melanoma patient and advocate
Bleeding is one that a lot of patients with sinus nasal mucosa melanoma
Uncontrollable for no reason.
I believe the same for vaginal
Mine was so different than everyone else because it was attached to my pully.
I would think constant sinus infections.
Probably the same with vaginally UTI’s
Douglas Lowell, Find a Cure Panel
Your mucosal melanoma never returned after this discovery and surgery?
Lori Mitchell, Mucosal Melanoma patient and advocate
Cancer typically doesn’t cause pain.
Douglas Lowell, Find a Cure Panel
Any treatment after surgery and radiation? Chemo? Immunotherapy?
Keep going. It’s fascinating.
Lori Mitchell, Mucosal Melanoma patient and advocate
A month after I had radiation I noticed a nodule on your collarbone and in my stomach. Called my radiation oncologist and he asked if I could get CT’s. I turned the car around and had cuts of lungs abdomen and pelvis
Ended up with a pet scan later but the mucosal melanoma spread to my neck, lungs abdomen and pelvis. I had immunotherapy Opdivo/Yervoy.
I had to wait to get my port and see the local oncologist because UCLA oncologist didn’t want me having treatment there and having to drive 250 miles every 3 weeks
First treatment was in June. Second treatment was in July and I ended up with uveitis and optic nurse inflammation. My vision in my left eye went from 20/20 to 20/800. The specialist here in Las Vegas didn’t know what to do so I called UCLA and made an appointment with the ophthalmologist I saw back after my biopsy. He sent me to retina specialist the next day (Tara McConnell)
Her staff spent 8 hours or longer with me. We were there when they opened and left at 600 pm. They did every test under the sun and realized what it was. She gave me a shot in my eye (steroid) to try and get rid of the inflammation
I came home and started using the steroid drops which actually caused my vision to get worse so I stopped using them. The inflammation went away and I cloudless see about a month later. My mom came over and helped me food prep because I eat really good and couldn’t see to cut up vegetables
Could see a month later.
They paused the immunotherapy for a month and I returned in august but they gave me an antihistamine before the immunotherapy and I didn’t have a reaction.
I forgot to tell you before I lost my vision, when I was getting the immunotherapy I started shaking so they had to call the doctors and they gave me an antihistamine. It was too late. My vision loss was almost immediately. I got the treatment on Friday by Monday on the way to work I couldn’t read the street signs. I went to work and called the ophthalmologist
The mucosal melanoma was gone after one week of the first immunotherapy. I no longer had the nodules that I could feel and the Ct scans showed no evidence of disease after the third treatment. I ended up having 6 treatments of Opdivo following the Opdivo/yervoy combo
I started getting called and really tired in September/October and told my local oncologist but he didn’t know why. I saw my local ENT because of constant sinus infections which I still have today because of the radiation and whatever happened during the first surgery. I have pseunonomas.
Getting cold.
Douglas Lowell, Find a Cure Panel
Amazing result. Opdivo Yervoy works for 28% of the people or something?
Lori Mitchell, Mucosal Melanoma patient and advocate
My local ENT was also trained at UCLA when I saw him and he could see I had my jacket on in the office he thought I ss sick. I told him I wasn’t sick just freezing. He called a local endocrinologist downstairs and sent me to him
I know it’s like 20 percent of melanoma patients. It is worse for mucosal melanoma patients
My local ENT told me the cancer spread fast and will go away fast which it did
Douglas Lowell, Find a Cure Panel
Blessing that you were receptive to it.
Lori Mitchell, Mucosal Melanoma patient and advocate
I saw endocrinologist and he put me on thyroid and hydoctorocortisone. Ultimately I went down and saw an endocrinologist at UCLA and she spent 3 hours with me and made sure my pituitary gland wasn’t destroyed. My body doesn’t make any cortisol and my thyroid is destroyed.
Thank God my body accepted it.
I was really healthy playing tennis all the time until I tore my tendon in 2016
Douglas Lowell, Find a Cure Panel
Speaking of God, how has religious or spiritual faith fueled during this war?
Lori Mitchell, Mucosal Melanoma patient and advocate,
I taught my granddaughter how to swim the summer before my pain started and was showing her
God has saved my life to help other people. He has used me in more ways than I can tell you
Douglas Lowell, Find a Cure Panel
That’s powerful.
Lori Mitchell, Mucosal Melanoma patient and advocate
I have been the grandma that everyone loves. I take the kids skating swimming line dancing teach them how to play softball pickleball tennis and we spent a lot of time on our boat water skiing etc. Before my cancer
Douglas Lowell, Find a Cure Panel
That’s wonderful, Lori Michell, Mucosal Melanoma patient and advocate.
Lori Mitchell, Mucosal Melanoma patient and advocate
I have been “no evidence of disease” since august 2018.
Douglas Lowell, Find a Cure Panel
So much to cherish.
Do you feel like you’re in the clear or do you have lingering fear that is may make some ugly return?
Lori Mitchell, Mucosal Melanoma patient and advocate
I had three surgeries to try and remove the infections
In my sinuses and think I have found a cure.
Douglas Lowell, Find a Cure Panel
Yes, please share.
Lori Mitchell, Mucosal Melanoma patient and advocate
I know it’s a matter of time that it may return. If it’s God’s will it will return. I believe that God was telling me to stop working when it metastasized so after I got my vision back and turned 60 I retired.
I’ve been communicating with other patients from the mucosal melanoma group since my original diagnosis in 2017.
Several people have died and there are a few of us left who were diagnosed before 2017 when the obdivo/yervoy and keytruda immunotherapy became available.
There are only a few maybe less than five who have not had the mucosal melanoma come back since original diagnosis or after immunotherapy.
I only know 1 who had sinus nasal mucosal melanoma and did not have immunotherapy but it did spread to his lungs and the doctor removed it. No co evidence of mucosal melanoma for over 10 years.
He did end up with another cancer though.
Several people who ended up with mucosal melanoma in sinuses had chronic sinus infections like me. I highly recommend a ct/mri if patients are having chronic infections.
Douglas Lowell, Find a Cure Panel
You’re incredibly inspirational, Lori.
Lori Mitchell, Mucosal Melanoma patient and advocate
My surgeries were to remove the exposed bone in your sinuses which supposedly was causing the infections. The first two surgeries did not work but the third surgery after the ENT decided to pay attention to my left side of my sinuses and removed all the scar tissue from the original surgery in2018 the infections stopped until April of this year.
Long story short it’s hard for me to tell you I short story. I saw my new local ENT in April and told him my sinuses were all filled with crust again. I was having a lot of pain in my neck where they cut me for the vein. He looked at my nose with his silly eyeglass because he won’t spent money on a camera to see what he needs to see and said, ”you are all clear.” So I went home and called another ENT who i had seen before. The ENT did take a culture and it came back pseunomas
I called his office a dozen times but no one. Allen me back. I saw the new ENT he did a debridement and said you have a really bad infection you need to take these antibiotics. I am allergic to 10 or so antibiotics and this was in the same family. So 8 called UCLA and told them I need gentamicin because the culture showed it as susceptible so 8 could mix it with my sinus rinse
I used it for a month and my sinus weren’t getting better. The new ENT referred me to UNLV head and neck which I had to wait 3 months to see. I saw the UNLV ent and he did a debridement 3 weeks ago and told me I had a bad infection. But I had seen my regular ENT the week before and he did a culture and the infection was now resistant to gentamicin. The UNLV ENT I was supposed to see is leaving so they set me up with a plastic surgeon ENt. He did my debridement and told me this wasn’t his specialty. I said you are who my doctor. Sent me to, he finally told me he wasn’t the doctor I was supposed to see.
I called an infectious disease doctor that I saw back in2020 and saw her last week. In the meantime I put a message out on the mucosal melanoma Facebook group stating I was frustrated and needed help. I had an infection that wouldn’t go away and I am allergic to so many of the antibiotics does anyone else use something Les to get rid of the infection. Well glory be to God. Three different patients told me they use a probiotic powder mixed with their sinus rinse to get rid of the infection once and for all. It puts in good bacteria similar to your stomach flora and vagina you need good stuff and we rinse good and bad out.
I use it and my sinus are better now than since surgery.
Douglas Lowell, Find a Cure Panel
That’s so wonderful that you got help from other patients in your group. Example of why this groups can be so valuable to many.
For Conversations readers, can you identify the probiotic powder used?
Lori Mitchell, Mucosal Melanoma patient and advocate
It’s called Lanto.
Douglas Lowell, Find a Cure Panel
Lori, you’ve been extremely generous with your time. Thanks for sharing such a powerful story.
