MPIP: Melanoma Patients Information Page

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The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Amy0223's picture
Replies 4
Last reply 2/24/2020 - 8:33pm
Replies by: Amy0223, Becky, casagrayson

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!

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almostalice's picture
Replies 2
Last reply 2/24/2020 - 3:37pm
Replies by: Bubbles, sks2019

I didn't expect 15 years later to gain so many new insights into my case. I came up CDKN2A positive and after over a year of insurance battles I'm finally getting a CT tomorrow focused on pancreas. 6mm depth Nodular 15 years ago was the highest staged primary but since then I've had several SSM's and an insitu.

I got to thinking more and asked around about slow melanoma's.

I had severe hypothyroidism found about 5 years after my first encounter with Melanoma. My TSH spiked up to 56 (not a typo ...). We got it down to range 0.9 to 2. If I don't take thyroxine my TSH creeps back up.

Has there been any research into metabolism and melanoma? The more I put the puzzle pieces together the more it becomes logical that a failing thyroid could have saved my life.

The longer time goes on and the more I reflect the thyroid issues came on around a time of severe tiredness. I was diagnosed with Narcolepsy with AHI 30 (awoken once every two minutes), I was bradycardic BPM 59, but treatments didn't work and was then correctly found to have Sleep Apnea. That will over time drive down and destroy thyroid function.

All of that is now under control ... I am left still with FAMMM and CDKN2A+ but I just wonder if metabolism can be a key factor in the survival outlook.

What's happening with my holistic medical history that's leading me to be able to tell my story of melanoma with no upstaging (so far over 15 years)?

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Steve33's picture
Replies 11
Last reply 2/24/2020 - 12:17pm

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?

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tkoss's picture
Replies 4
Last reply 2/24/2020 - 12:01pm
Replies by: almostalice, Becky, tkoss, JudiAU

does the melanoma take hold at the place on the epidermis exposed, or can iit show up on other parts of you skin, maybe adjacent , maybe not so adjacent?

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REESE8590's picture
Replies 4
Last reply 2/24/2020 - 12:21am
Replies by: Ciucco, lkb, REESE8590, Bubbles

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 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 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



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.


CHEST WALL: No significant abnormality noted


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.

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Anonymous's picture
Replies 1
Last reply 2/24/2020 - 12:08am
Replies by: Ciucco

I am a 41 year old female. I had a mole that newly presented on the back of my knee. It was about 6mm and very very black. I had it biopsied and the results were: Spitz Nevus - Junctional. The report read orderly nests were present, large nuclei, and some pagetoid spread with many melanocytes present. It was recommended that I have a complete re-excision to remove it completely due to my age, rareness of this growth, and because atypical cells were present. I had the re-excision and I am awaiting the results. I am concerned because I have read about misdiagnosis being common in adult patients with spitz nevus. I have a family history of melanoma with an uncle diagnosed with Ocular Melanoma and a maternal first cousin diagnosed at the age of 24. Both family members were diagnosed stage IV. Should I have a second opinion? or is this pretty standard?

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Baby_Girl's picture
Replies 4
Last reply 2/21/2020 - 10:52pm
Replies by: Baby_Girl, maryb-z, Edwin

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?

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Tsvetochka's picture
Replies 7
Last reply 2/21/2020 - 12:46pm
Replies by: tkoss, Tsvetochka, ed williams, hxcadam, Anonymous

In May 2019 I was diagnosed with Stage 4 melanoma, no known primary. I started Keytruda in June. It's gone pretty smoothly. Fast forward to now: my doctor ordered a PET CT. When I look at the results, it seems like there's still some cancer. Two tumours are still there, but inactive and smaller than the last CT scan. One lymph node is still active: "1.9SUV," which is supposedly not significant?

I sent the results to my doctor, and she just answered that they're good, we'll stop treatment. I have an appointment with her in a week or so, and I know we'll discuss it then. But I am just wondering what does this mean? I'm not really NED, right? Is it (almost) No Evidence of (active) Disease?

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sks2019's picture
Replies 3
Last reply 2/21/2020 - 12:00pm
Replies by: jbronicki, JudiAU, tkoss

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 :(

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Replies by: lkb, JudiAU

"For the past three years, cancer researchers at two of the UK’s leading institutes have been showcasing the unexpectedly beautiful side of their work through a special award.

Staff from the Institute of Cancer Research (ICR) and the Royal Marsden NHS Foundation Trust, both in London, submitted the images they felt exemplified the beauty and complexity of their work for the ICR Science and Medical Imaging Competition."

Read more:

Two scaning electron microsope images of a melanoma cell get mentioned among the top six images in a medical imaging competition.

1. Melanoma cell invasion in 3D
Vicky Bousgouni and Chris Bakal

"This picture of an aggressive melanoma cell (green) growing into a matrix of collagen was taken by Vicky Bousgouni, Chris Bakal and David Robinson. It is one of the first 3D images of cancer cells to be taken using scanning electron microscopy. Collagen matrices are used to model how cancers invade tissues during the metastatic process. Here, the cancer cell pulls on its fibres and wraps itself in collagen to remodel its environment and increase the chances of survival."

2. Melanoma on a Chip
"A metastatic melanoma cell that has been blasted open
Nick Moser and Chris Bakal

Imagine cutting an apple in half and looking at its core – that is a little like what has happened to this metastatic melanoma cell. Nick Moser and Chris Bakal used an ion beam to blast away part of the cell, a technique known as ion-beam milling.

The triangular shape was caused by the angle of the beam as it cut into the cell and the silica substrate it is growing on, creating the illusion of depth. The method allows researchers to see inside cancerous cells in unprecedented detail and understand what is going on internally.

As melanoma cells attach to surfaces using structures called focal adhesions, removing part of the cell lets them see what happens when these structures form. The spread of cancers around the body is the primary cause of death from the diseases, so understanding how such cells attach to tissues is vital to cutting death rates."

I am sharing this article I came across in hope that these bring more insight into the world of melanoma and also help us visualize melanoma demise.


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Lori0529's picture
Replies 4
Last reply 2/20/2020 - 12:01pm
Replies by: Lori0529, Bubbles, tkoss

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

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sks2019's picture
Replies 1
Last reply 2/20/2020 - 11:47am
Replies by: tschmith

Just read JuliefromSoCal update and thought I would share on whats going on and see if anyone has any experience with this and can provide any inputs.

so there are numerous tumors on the liver biggest one being 7 cm.. mom is being treated at UCSF.
GI oncologist discussed options
1) 70% liver removal which will still leave some small tumors on the left lobe and if the liver grows back fast so does the tumors as well so basically no benefit of going through this radical surgery.
2) RadioEmbolization - which is like injecting radiation beads next to the tumor to kill it. so its a one time procedure and then scans after 1 month. He also discussed if the melanoma specialist would want to add a chemo pill for 2 weeks to make it more effective.

I am very hopeful that this will kill the liver tumors and then maybe we can think about getting into the Xmab20717 trial from Xencor/

How do you folks feel about the plan and Does anyone has any experience with radioEmbolization to the liver ?


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swissie's picture
Replies 5
Last reply 2/20/2020 - 10:56am
Replies by: swissie, ed williams, MelMel

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?

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Citrus89's picture
Replies 8
Last reply 2/20/2020 - 10:16am

Hi everyone! I am new to this site but not new to Melanoma. My husband was diagnosed in 1996 with stage 3 melanoma. He had widen insecion with clean margins and a sentinel node biopsy that showed it did not travel. No further treatment was done. Fast forward 23 years of taking care and watching closely, the melanoma returned in a mass on the back of his eye. A needle biopsy confirmed it. A pet scan showed a few other spots but not in any major organs. The biggest spot was in his adrenal gland. We have a good oncology team but we did make a quick trip to NYC to see Dr. Chapman who confirmed the treatment of the combo. He suggest 2 treatments and then a rescan. Our oncologist was open to rescanning after after two doses. On Feb 5, my husband had his second treatment. The side effects this time have been all stomach related with diarrhea and acid reflux. Our physician has been prescribing all over the counter drugs including Imodium, nexium and gaviscon. He has barely eaten in days and nothing stays in. I would appreciate your thoughts and suggestions.

Thank you

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Had surgery on Jan.31st to remove 2cm mass on outside wall of sigmoid colon that was suspected to be melanoma,. Surgeon called to check on me and let me know path report said was not melanoma! Finally some good news! So fingers crossed for PET and Mri fisrt of March. Hope everyone here gets some good news this year as well. Great site with great people and great information! Thankyou all for all your support for me and others that end uo here!


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