I was diagnosed with mucosal melanoma of the right hard palate and left soft palate in October of 2019, after having just had my reconstruction from breast cancer. I was cancer free in August 2019. I have lupus and scleroderma, so my oncologist and rheumatologist did not want me to do immunotherapy or radiation. Chemotherapy has not shown to be effective with mucosal melanoma. Surgery was not an option due to the hard and soft palate being involved. I am BRAF negative and C-KIT negative.

I started TVEC injections in my mouth in November 2019. This is the first time my oncologist at the James has tried this procedure in the mouth. I have not found anything anywhere that can give me any information about anyone out there that has had this treatment done in their mouth and the outcome. I have positive changes occuring, but they could not do a sentinel node biopsy due to the location, and the PET scan is not that reliable for detecting lymph nodes in that area. I did not have metastasis to any organs or brain at the time of the PET scan at the end of October.

History: I went to my dentist after my mastectomy with a sore in my mouth in June 2019. She gave me medication for infection. Went back 3 weeks later and it was worse. She sent me to the periodontist, and a few weeks later he said he didn't know what it was and was going to do a biopsy. My rheumatologist instead wanted it performed by a dermatologist. A few weeks later I went to my regular dermatologist who said that the area was too vascular and wanted a surgeon in their office to do it. A few days later I went in and he said the lesion looked vascular and no worries. Did the biopsy. He called me a week later and apologized because he said he only has seen two of these in his entire career, and mine was the second. It was a blow, because I knew how serious and aggressive this cancer is. It had grown significantly between June and October, when I was finally diagnosed.

I am telling this story to help others who may not take a sore in their mouth seriously. I thought I had an infection, as well. Has anybody on this forum had mucosal melanoma and TVEC injections? Thank you!

I’m stage 3B and began on Opdivo in Dec 2019. The blood test 1 month after first fusion showed my thyroid is producing too much T4F. My oncologist referred me to an endocrinologist who said we might have to switch agents if thyroid level doesn’t come down. Symptoms are loss of weight, rapid heart beating, and constantly feeling “on the edge”. I am on a beta blocker to reduce blood pressure ( I am an otherwise very healthy/fit 33 year old). Has anyone had similar issues with Opdivo? How was it managed?

Hello everyone, my name is Kevin. Let me first apoligize for the poor grammar, misspelled words or incorrect terminology i may use. I would like to share my story with melanoma along with my current status and ask opinions on what I might expect going forward. I was first diagnosed in 2013 by a mole i had biopsied on my neck. At the time I lived in Maryland and didnt have health insurance. I had to go through state assistance and the care that i received was mediocre at best. I was sent to a surgeon who did an Excision of the site, removed the mole and some of the surrounding area along with some lymph nodes. For whatever reason...probably not having insurance...i was not offered any kind of post op treatment or therapy of any kind.
During recovery from that operation, i moved out to the chicago area to be with family and have been here ever since. In 2015, i noticed a swollen lymph node in my neck, just a few inches away from where my mole removal was. This time i had insurance, so i did some research on the best melanoma doctors near me. I settled on Dr. Gajewski at the University of Chicago. I went in for my visit and they did a fine needle biopsy of the swollen node and it turned out that the melanoma was back. The plan of attack this time was to have surgery, a full left side neck disection. The tumor and several lymph nodes were removed. Dr. Gajewski suggested that for post op treatment, i sign into the immunotherapy clinical trial that was going on at the time for Nivo and Ippy. It was a blind trial and to this day i still do not know which drug i received. I will say...it was a much better experience than my first surgery. it was nice having a team working on my case. So, anyways I do the clinical trial, which was supposed to be treatments for a year, i think. I ended up being removed from treatments because i had a side effect. The CT scan i had after being on the trial for 3 months showed a spot developing on my right lung. So they immediately wanted to have that spot biopsied. I was sent for a CT guided lung biopsy. As many of you know...this isnt the most pleasant expierence. Apparently most of these are done as Outpatient surgeries. Mine was Inpatient and i was kept for 1 night for monitoring, plus i had a drainage tube, that they removed the next day. What a painful moment that was.
The news was great, the spot on the lung was not cancerous. However, i developed Sarcoidosis as a result of the immunotherapy. Certainly news i could live with.

All that said...so far my questions to my fellow patients are: Has anyone else here developed Sarcoidosis ? if so, what has been your expierence with it ? Have you expeirenced any flare ups ? Also, is anyone else here a patient of Dr. Gajewski's ? Or a patient at University of Chicago ? Just curious your thoughts on the University and care youve received there.

So as of this past August/2019, I went almost 4 years with clean scans. My most recent scans, January/2020, now shows a nodule growth on the left lung this time. 14mm x 15mm, along with a couple enlarged lymph nodes. I am currently awaiting a phone call to setup another CT guided lung biopsy. Naturally, I am anxious to find out if the melanoma has metasticised to the lung. Of course my hope is that it my Sarcoidosis flaring up. I dont know how realistic that hope is. I have read that its a possibility. Which leads to the rest of my questions...what have been some of your expierences with development on the lung ? What can i expect as my next treatment if it is determined that melanoma has spread to the lung ? I am 35 years of age and feel great BUT i know that doesnt necassarily mean anything. Below is the reults of my last scan. Thanks to anyone taking the time to read this and respond !! I am VERY appreciative and grateful for any discussion suggestions.

CLINICAL INFORMATION: Male 34 years old Reason: patient in follow up following treatment
on clinical trial. please identify and measure index lesions per recist criteria. compare
with previous images History: metastatic melanoma

TECHNIQUE: Axial CT images are obtained through the chest, abdomen and pelvis after
administration of oral contrast and 100 ml intravenous Omnipaque 350. Coronal reformats
were also generated and reviewed.

COMPARISON: CT dated 8/3/2019

FINDINGS:

CHEST:

LUNGS AND PLEURA: There is a new nodule in the left lower lobe measuring 15 x 14 mm image
#74, series #205 compatible with metastatic disease. Likely postsurgical changes in the
right middle lobe, unchanged. Other scattered micronodules are grossly stable.

MEDIASTINUM AND HILA: Index right hilar lymph node is stable measuring 10 x 11 mm image
#30, series #201. However interval increase in the size of the left hilar lymph node which
now measures 2.4 x 1.3 cm image #35, series #201. This node was measuring 6 x 10 mm image
#43, series #301 on the previous study. More posterior pericardiac node on the left side
is also increased in size within the interval.

CORONARY ARTERY CALCIFICATION: None.

CHEST WALL: No significant abnormality noted

ABDOMEN:

LIVER, BILIARY TRACT: Multiple small hypodense lesions in the liver including the index
lesion measuring 6 mm in the right lobe on image #64, series #201 are stable. Metastatic
disease cannot be excluded.

I am stage 3 and my last scan was about 4 months ago and was clear. I will have my 12th and last dose of Opdivo this month. All my scans have been clear since my WLE/SLND January of 2019. My next scan is in a couple weeks. I called to asked and they said this was a head to mid thigh PET scan. The last one I had was whole body. I am wondering what other stage 3 (or stage 4) patients usually get. Whole body or skull to thigh? It seems my surgeon is more aggressive and he has been the one to order whole body scans but my oncologist seems to only order to thigh. Should I call and request whole body or is skull to mid thighs sufficient?

In case people have been looking at my posts and wondering what has been going on with my mom. I am writing an update more of to vent it out.
Mom's liver mets are growing and growing fast. PET/CT on Jan 10 the biggest tumor size was 7.6x7.7 cm with many small ones 2- 3 cm . Now CT on Feb 14 showed biggest tumor is 9.2x6.8 cm
so almost 2 cm in less than 30 days. CT also reveals spot on right kidney not sure what it means but given how things have been going on with her. I woudnt be surprised if its mets.

SHe had no treatment since nov 5 (ipi/nivo side effects) , Is very tired and nausauted , having adrenal insufficiency so taking 15mg hydrocortisone for that.

Tumor burden is taking over as her energy is gone and she has lost appetitie due to nausea .
Today she will be starting a trial with NIRAPARIB. Please pray it works for her.
At this point I am just preparing myself for the worst scenario :(

2008 -- Melanoma in situ (lower right leg)
2015 -- Melanoma 2B upper right leg (Sentinel Node Negative)

2020 -- CT scan showed swollen right groin lymph node -- Biopsy confirms Melanoma -- now stage 3b

Treatment plan is Opdivo/Yervoy -- followed by a Superficial Inguinal Lymph Node Dissection
(Lymph node with checked along the way to evaluate effectiveness of Immunotherapy)

Surgeon also recommended a Plastic Surgeon work WITH him to o perform a Lymphovenous Bypass during Superficial Inguinal Lymph Node Dissection to lower the risk of lymphedema.
(veins are used for fluid drainage)
It's my understanding that this surgery has mostly helped alleviate lymphedema from PREVIOUS surgeries. This surgeon tries to prevent it.

Now the plot twist:
Met with the plastic surgeon today.
He is concerned that a Lymphovenous Bypass on the right side will drain fluid from the right leg directly into the veins without "filters".
This is concerning should I still have melanoma cells in the right leg or have a recurrence there in the future.

He would like to consider a Lymph Node Transfer during the Superficial Inguinal Lymph Node Dissection.
Lymph nodes will be taken from my left underarm and placed in the right leg

He said this surgery has successfully helped alleviate lymphedema in patients experiencing swelling from a previous surgery, but there is not a lot of outcome evaluation for patients getting this surgery DURING Superficial Inguinal Lymph Node Dissection.

Has anyone had this surgery?
Those who have had Superficial Inguinal Lymph Node Dissection -- what should I be considering?

My thinking:
Priority #1
Do everything possible to minimize melanoma spread/recurrence

Priority #2
Try not to end up with life-long leg swelling

Hello all

As many off you, I feel lonely during a difficult time of waiting for results.
My history: 1992 first melanoma, 2008 second melanoma.
2009 spread to the lymph nodes (with spreading in surrounding fat tissue).
2009, Participated in a double-blind trial with 10 mg/kg ipi, however I was in the placebo group.
So basically, I am an untreated Stage IIIb patient without recurrences.

Had 3 moles removed since 2009. Two on my request, they were ok. One as the doctor saw it, this was atypical.
Last week another mole was removed. I’ll have the results next week. And I’m freaking out.

I do not want to scare my friends and family. Most new friends have no clue what it is.
One of my best friends is in the hospital with a burn out and she totally freaked out when she heard. I ended up comforting her.
But I am scared. The numbers are pretty much against me, right?

My last scan (in the trial) was in 2016, after that my doctors told me I’m too young for regular scans (46). If the cancer is back, I will request a scan.
Any advice from you on having scans? Shall I ask anyway? I know this beast can always come back, but as I’ve been clean so far, I don’t know if I should ask or not.
Also, if you have any advice on how to get through the next week?
Thanks