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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THMoore's picture
Replies 8
Last reply 4/30/2020 - 5:17pm

I am newly diagnosed with melanoma stage 3b. I was brushing my teeth and noticed a lump on my neck. I knew immediately something was wrong. I know my body. I was injured when I was 16 playing football. I am a incomplete quadriplegic. I use a wheelchair and scooter to get around. I went to 3 doctors that misdiagnosed me before going to MD Anderson. I ended up having surgery to remove the tumor from my parotid gland. It wasn't until frozen sections were performed during surgery when I was officially diagnosed. 31 nodes were removed from my neck and 5 from my parotid gland. All were negative with the exception of the single cancerous lymph node. There was no primary tumor. I am currently receiving radiation and afterwards they want me to take immunotherapy. Being disabled, I am extremely scared to take Immunotherapy because I am don't know if my body can handle the side effects. The oncologist says I can do it. Easier said unless your a quadriplegic.

My questions are does anyone have or have had the same diagnoses. Unknown Primary and Melanoma of the Parotid Gland? If so, what actions were performed? Do you think I should take immunotherapy or a wait and see approach? Everything I read scares me to death.

I would appreciate any words of encouragement and experiences encountered..


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Andy1969's picture
Replies 4
Last reply 4/16/2020 - 9:10am

A few days ago I went on mekinist/tafinlar for adjuvant therapy. I have Stage 3B melanoma after a subcutaneous tumor with unknown primary was found and removed on my back. All scans are clear. Today I feel very feverish and achy. Has anyone else experienced this and if so, how long did it last.

Thanks for any help!

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caman's picture
Replies 6
Last reply 4/13/2020 - 3:06pm
Replies by: caman, Patrisa, Tsvetochka, Anonymous

It seems my cancerous lymph node shrank a little bit. Might be my imagination though . I'm getting a little impatient, and its only been a week. Anyone here have any experience with this drug or opdivo ?

Any input would be appreciated. Thank you!!

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SarahBug's picture
Replies 1
Last reply 4/24/2020 - 7:00am
Replies by: SarahBug

Hello all, I am new to melanoma, but have had a few BCCs and MOHs procedures in my time. I am seeking your wisdom and experience.

History of this newly diagnosed melanoma:
During full body scan August, 2019. Derm noted unusual pink spot on right forearm, took a photo of it, and said if it's not a "bug bite" and doesn't heal up we'll watch it.
I kept an eye on it all winter: flat, pink, a little patchy, not huge.

Fast forward to March, 2020: Over four weeks it seemed to become pinker, raised now (puffy with a palpable lump), with a distinct and tiny "bug bite" hole at the top of it. Went in last week, derm said it didn't seem to have changed much, but would do a shave biopsy cause she would be really surprised now if it wasn't a BCC or SCC. I said, what if it's a melanoma? Would a shave then not be indicated? She said due to COVID19 situation, and of not wanting me to chance virus exposure coming in for a second treatment visit next week, and because she would bet her life on it being a BCC or SCC she'd go ahead with a shave and then an ED and C (electrodessication and cutterage) to finish it off so I wouldn't have to come back in again. Of course, I said OK (I have seen this derm for 25 years and she's never steered me wrong).
Pathology report:
Clinical Data: A: Morphology: erythematous indurated plaque


Multiple levels reveal an elongated specimen which is focally ulcerated and covered by fibrinopurulent crust, associated with dermal collagen degeneration. There is a broad and irregular proliferation of hyperchromatic and pleomorphic melanocytes in a confluent pattern along the junction focally within the papillary dermis at a thickness of 0.2,,. There is severe solar elastosis. There is a patchy lymphohistiocytis infiltrate.

Questions for anyone who can speak to this: Lentigo maligna melanoma is a pretty rare subtype that usually arises from a brown, spreading patch. Mine was small, and pink and did not present typically, hence my dermatologist's shock when she had to call me with the news.

1) Anyone out there with a lentigo maligna melanoma that presented atypically? If so, what was your experience?

1a) Also curious about "Desmoplasic Melanoma" and its association with Lentigo Maligna Melanoma, if you have any experience (as that is an amelanotic pink lesion? that has gone undiagnosed???)

2) What does ULCERATION PRESENT, BUT LIKELY TRAUMATIC mean in the scheme of things?

3) Was this able to be staged because the pathologist was able to read the deep margin, even though it was a shave biopsy?

4) Do you think that ED and C treatment after the shave biopsy messed up my clinical path much?

Any and all comments, including your general interpretation, on this path report and your experience will be helpful. Of course, I will be talking with my doc soon, but wanted to get this board's collective wisdom.

Scheduled for MOHS surgery, late April.

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Jen07's picture
Replies 3
Last reply 4/9/2020 - 9:05pm
Replies by: doragsda, JudiAU, MelMel

My husband is currently Stage 4. He has not had any treatment since November 2019 due to circumstances that I don't want to completely get into at this time. Since then, he's had a couple of new places to show up in his groin and has most recently in the past couple of weeks been experiencing dizziness and has passed out a couple of times. He hasn't had a scan and is refusing to go see the Dr. or have scans done right now. I do not know what could be causing the dizzy spells and passing out. Could anyone give me any insight on if they've experienced this and what it could possibly mean?

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jjk17's picture
Replies 5
Last reply 4/13/2020 - 7:13am
Replies by: LRS88, jjk17, Anonymous, AshleyS, Christiane29


I know this subject has been brought up before, but was just seeking for some more insight.

I was Stage IIIb . Had tumor removed and couple of lymph nodes that it had spread to. As of today I have been cancer free for 2 1/2 yrs now. My husband and I are talking about pregnancy again and it scares me. I had a successful first pregnancy, my spot came up about 1 year after.

We have been told all the risks ect. Just looking for some advice.....Is it worth it? I feel so uneasy about this and it's really taking a toll on my husband.....

Any advice is greatly appreciated.

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Replies by: Beany, ed williams, MarkR

Hello again everyone,

Thank you for taking the time to read my post. I just had a blood test today which is one week after infusion three of the nivo/ipo. The levels are below

ALT(GPT) 126

The doctor is a little concerned because I had diarrhea for two days last weekend but it has stopped thankfully.
My questions are:
1. Are these levels something to be concerned about?

2. Will these levels possibly go down before next Wednesday?

He will have me do another blood test next week to determine whether I can do infusion number four. He seemed to be concerned about the diarrhea.

Thank you for your help,


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texasgirl's picture
Replies 3
Last reply 4/8/2020 - 2:50pm

Has anyone had these opacities show up on a scan? What was your outcome?

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tkoss's picture
Replies 3
Last reply 4/9/2020 - 3:56pm
MarkR's picture
Replies 9
Last reply 4/11/2020 - 7:15am

Reaching out to those that were on the original Ipi/Nivo trials....
Had a call today that bloods show increase in Liver enzymes to Grade 1 for one enzyme and Grade 2 for the other. Have to go back tomorrow for more bloods. For those on the original trials did you get to go back into the trial if you had to pause treatment for toxicity?
At the moment I think I can carry on but if it rips into Grade 3 I guess that will be it. Feedback appreciated

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tkoss's picture
Replies 0

if any, impact CV will have on my treatment. God Bless me i have asked if nivo is made in USA or relys on pre-cursors from China. Nobody I asked knows.

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Beany's picture
Replies 4
Last reply 4/5/2020 - 1:46am
Replies by: Beany, tkoss, Bubbles

Hello everyone,

I looked on the web but couldn't find anything. My liver enzymes fell which apparently is good.

Pre Infusion 2 Pre Infusion 3
AST (GOT) 77 39
ALT(GPT) 204 60

Could it be a sign the combo is working?

Sincerely appreciate you all and this forum,


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Jornellas's picture
Replies 4
Last reply 4/5/2020 - 8:53pm
Replies by: Jornellas, tkoss, JudiAU

Hello, hope everyone is staying safe during these trying times with the virus. I’m new here and if this is not allowed please accept my apologies.

So I’m 40 years old and my doctor sent me as an emergency to a dermatologist who wants to biopsy my flat mark on my chest as she says the size, color and shape makes it very suspicious for melanoma. So I joined here again I hope this is okay. I just wanted some advice on what we’re your ways of finding out? What made you go to a doctor for it? Asking because this may sound crazy but I’ve had this marking on my chest for a minimum 4 years. Please send any helpful advice or stories my way. And for the record I am a person who’s always had postpartum depression or any kind of depression been on and off of antidepressants for years now so my mind is getting the best of me and through this covid-19 happenings this is just pushing me to lay in bed and cry. I asked if we could wait until this is all over with because I don’t like leaving my house and they said no I need it done ASAP. Please please send any stories or anything my way to hear it from someone who has experience and not me just reading off the internet and getting more in a funk

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caman's picture
Replies 4
Last reply 4/7/2020 - 11:25am
Replies by: caman, chrispl1974

Hi, the melanoma calculators found on the web, does it take into account the advances of immunotherapy like keytruda. My second question, what is considered a low or high tumor burden. Many thanx!!!

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Beany's picture
Replies 2
Last reply 4/2/2020 - 12:02pm
Replies by: Beany, ed williams

Hello everyone,
I am just about to get my third infusion and here are the blood test results. Could you please tell me what you think of these levels especially AST, ALT, and LDH/LD.
I am not sure why LDH is not registered whereas LD is. I will ask the doctor soon.
AST (GOT) 39
LD(IFCC) 235
Sincere thanks in advance

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