MPIP: Melanoma Patients Information Page

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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Christine.P's picture
Replies 4
Last reply 10/22/2015 - 5:32pm
Replies by: Swanee, _Paul_, CarolA

My recent history: two primary melanomas - a large one that required a skin graft on my right calf with no spread to sentinal lymph nodes and a small one on my left arm near the elbow that had spread to sentinal lymph nodes. Had full axillary dissection of 20 nodes; only one was positive for cancer,  but it was large (a little over 6 cm). 

I just got my the results of my MRI and CT scan and, thankfully, there is currently no spread to brain, lungs, or liver. Unfortunately, though, the CT scan revealed two masses/lumps  - one in my left breast and one between my breasts just above my diaphragm (and in front of the breast bone). Mammogram and biopsies are pending. 

My question is whether anyone out there has experienced this kind of spread. I know both could just be cysts but I also know they could both be melanoma - or even a different kind of breast cancer. 

I'm not sure how this will affect my final staging and I know I can't know until the tests are back, but I can't help but be a little worried and I wanted to reach out to this kind and well-informed community. 

Thank you!

Christine P. 

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Anonymous's picture
Replies 3
Last reply 10/1/2015 - 10:22am

Does anyone know when the fda will approve ipi in combination with nivolumub? I had previously heard sept 30th but can't seem to find this info anywhere. I know it's close to being approved. Thanks 

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Debbieamccoy's picture
Replies 11
Last reply 10/1/2015 - 10:34pm
Replies by: Debbieamccoy, tschmith, Anonymous, Bubbles, arthurjedi007, dfeng

I was diagnosed 3b may/15. Had WLI AND CLND . Only my sentinel biopsy was positive. I had perfectly clear scans on 8/18 on 8/26! I had my first round of yervoy. One week later I started n/v went to the ER and with my history a ct was done that showed probable mets to confirmed by biopsy. All of my liver enzymes are out of range ast 76 alt 284 and allk phos 278. My LDH is 5280. I started Keytruda last week but  I saw my dr this morning and he mentioned his concern st this rapid change of events occurred . I am too has any one else been threw this , I'm discouraged but stil fighting 

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tangokilo's picture
Replies 4
Last reply 9/29/2015 - 5:06pm
Replies by: tangokilo, stars, looptwelve

Hi I am a 29 year old male, this past May I had a mole removed by shave biopsy and was diagnosed with Melanoma In Situ.  Looking at my path reports from the shave biopsy and the excision it seems they do not include very much detail.  I was courious of the actual depth/thickness of the melanoma and type (superficial spreading, lentigo maligna, etc.) both of which are not on the path reports.  


Below I have typed all of the information listed on each pathology report, should there not be more information on theses? Also any help deciphering what they mean?



05-28-15 Clinical info (Shave, Irregular brown papule, R/O dysplastic nevus)

Gross Description: Specimen received in formalin identified as "left anterior distal thigh" and consist of a tissue fragment measuring 9 x 5 mm. The specimen is trisected and totally submitted in one cassette.

Microscopic Description: The epidermis shows a broad confluent proliferation of mostly solitary, junctional, atypical melanocytes. MART-1 immunostain highlights these features. Controlstains appropriately.

Diagnosis: Skin, Left anterior distal thigh- Melanoma In Situ.



06-08-15 Clinical info (Excision, malignant melanoma in situ, please check margins)

Gross Description: Specimen received in formalin identified as "left Anterior Distal Thigh" and consists of a tan excision measuring 38 x 15 x 7 mm. The specimen is serially sectioned and totally submitted in six cassettes (A1=2 pcs., A2=2pcs., A3=2pcs., A4=2pcs., A5=2 pcs., A6=3pcs.)

Microscopic Description: Sections display epidermal ulceration with underlying granulomatous inflammation and early scar formation. Horizontally oriented dermal fibrosis is associated with increased capillaries and a sparse inflammatory infiltrate.

Diagnosis: Skin, Left anterior distal thigh- Biopsy site reaction. Note: There is no evidense of residual melanoma in situ. Deep and peripheral margins are free of malignancy.


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Bubbles's picture
Replies 4
Last reply 9/28/2015 - 11:42pm

As Weber alluded to in the webinar included in my last post...the synopsis thus far, of the CheckMate 064 trial with sequential Ipi followed by Nivo vs Nivo followed by Ipi was put out today at the 2015 European Cancer Congress.

Here is a post I put up that includes the abstract as well as a link to a report from OncLive.
All I can say is....Here's to the ratties.  We owe you a debt of gratitude that we will never be able to repay.
And......FDA.....Are you listening???????
My best to you all.  Celeste

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ET-SF's picture
Replies 9
Last reply 9/30/2015 - 12:26am

Hi all,

I read and hear different things about monitoring schedules for IIIb melanoma.  How often is the following typically done (and what does insurance support)?

  - CT of trunk

  - MRI of head

  - PET of trunk

  - sonogram of lymph nodes

  - physical exam

  - dermatological exam

Thanks, everyone!

SF and ET

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Southernbelle76's picture
Replies 7
Last reply 9/28/2015 - 10:55am
Replies by: Ed Williams, Anonymous, Southernbelle76, stars, Bubbles, BrianP

Hey everyone, as stated previously, I am new here. 

Last year I had a rash that kept irritating me on my back. It was itching and burning. I worked for a dermatologist at  the time so i asked her to look and see what was going on. She suggested a biopsy. For a rash? I thought.

Five days later, the path came back. Stage 3 malignant melanoma. Ulcerated. .44 on the breslows. I had an excision that same day.

I started seeing an oncologist the following week and subsequently had an SLN. That came back clear.

Path after the excision. Came back malignant melanoma in situ. What I don't understand is exactly what that means. Is it still there? Is it going to come back? 

Everytime I have a skin irritation now, I have a panic attack thinking "it's back" 

My oncologist has me coming in every three months and has now suggested an MRI I think every six months. 

A anyone have any insight they can share with me? 


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Tracyd715's picture
Replies 3
Last reply 9/29/2015 - 3:05pm
Replies by: Tracyd715, Anonymous, jpg

Hi everyone. My husband who is stage 3 finished the 20 day round of interferon this past Monday. He had been battling dehydration and nausea the whole time. Halfway through they added steroids and Ativan to his treatment. Wasn't doing any better since finishing Monday so they put him on fluids for 5 days. Ended up at the ER this morning because he still couldn't eat or drink with the nausea and hasn't slept much the past week. They did a CT scan on his abdomen and found lesions on his liver, spleen and lungs. They are hoping the cancer didn't spread but I thought that I read somewhere that this could also be an interferon side effect? Has anyone heard of or experienced this?

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Bubbles's picture
Replies 8
Last reply 9/28/2015 - 5:37pm

For you all:

I put this post together and thought it might be helpful to some of you.  It includes a webinar with slides presented by Jeffrey Weber and Sanjiv Argwala about data attained from combination therapies (both targeted and immuntherapies) vs results when used alone, side effects, why they work better together, and possible ways to choose the best therapy for the patient.  While none of it is really "new" it does put things together in a fairly concise, understandable manner.  I listed what were some of the salient points to me, if you don't have time for the hour long video.

While nothing is written in stone....we've come a long way baby!!!  Thanks again for the link, Steven.  I wish you all my best.  Celeste

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Jubes's picture
Replies 4
Last reply 9/26/2015 - 12:25pm
Replies by: davekarrie, Bubbles, Jubes

Hi all

Just an update on my progress. I had to stop keytruda on August 7 after 11 months and stable and reduced tumour in my lung. I have terrible arthritic/myalgic type pain pretty much paralyzing me in the mornings. It takes a few hours to be able to get out of bed. I am on steroids and now oxycodone for it. But this week I saw a rheumatologist who is a scientist and teacher as well at several universities and I was impressed with his dismissal of my presumption that the pain is due to keytruda. He has sent me for a million new blood tests bone scans and spine mris. He is counting everything out one by one and I hope he can get to the bottom of it. I just wanted to let you all know, as I am the only one I have come across with this so it may be interesting for you or someone in the future if he finds that the cause is the immunotherapy, even if it has somehow triggered genetic rheumatoid arthritis which my mother had at a much older age (I am 58). The doctor is a specialist in women with breast cancer who ended up with arthritic disease symptoms from their treatment 


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Anonymous's picture
Replies 5
Last reply 9/28/2015 - 4:28pm

Is anybody combining Keytruda with alternative therapies?

For example using vitamins, supplements, detox, saunas, enemas etc with Keytruda.

My doctor said i could take any supplements i wanted but he wasnt too keen on doing any detox procedures. In fact he advised against it.

What are other peoples experiences?




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Daisy2004's picture
Replies 14
Last reply 9/28/2015 - 3:53pm


My name is Diane. I couldn't get a username with Diane, So i used Daisy who is my dog. I am a little confused. I had a biopsy of mole 02/15. It came back as a 2.25 Melanoma. I had surgery WLE and SNB. They did not find anything in my lympnodes. So I have been seeing myDermatologist every three months. Long story short I have a very strong family melanoma historyy Dad had occular melanoma, my sister had 8 primary Melanoma's and my brother had a 1.0 Melanoma. We were used in a study and it turns out we have a BAP1 mutation, which causes increased risk for Melanoma. I had been seeing my dermatologist at MGH Boston. last month i found a lump under my arm and was referred to medical oncology.When i went for my appointment the lump is an enlarged lymph node, but not too big, so he decided we watch it. What he said he was concerned about was that I had MICRoSatellites in my original biopsy. He said that microsattelites, in transit mets, macro satellites, are Melanoma cells that had begun to metastasize away from the primary tumor. He said that tells him it is an agressive Melanoma and that makes me Stage III. I am to see him every 3 months and scans every six months. I am scheduled OCT 12th for Brain MRI, CT SCAN of chest,Abdomen and pelvis . I will be asking my derm, but I don't understand why I wasn't told this in February. I did find information online that states it is a stage three diagnosis. I have a question ? 

Has anyone else had a Melanoma with satellites and what treatment if any are you doing ?


Thank You!

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arthurjedi007's picture
Replies 14
Last reply 9/28/2015 - 5:31pm

Doc decided to cancel the keytruda il10 trial I was supposed to start today. He wants to be more aggressive and do the non trial keytruda plus abraxane. Not sure when that will start. Doc said today but nurses are saying this weekend or next week.

Any thoughts about that combo? I guess it's what I'll go ahead and try. It's one dose. Then 3 weeks another dose. Then 3 weeks and scan. He said abraxane is usually weekly but since he's combining keytruda it will be 3 weeks. I've been off treatment exactly a month so hopefully it starts soon. I'm getting in much worse shape than I was a few weeks ago when we first came here.

Also if I understood right they can't do genetic testing on my shoulder. The biopsy doc swore he could tell on his ct the difference between necrotic and not. But all the cores they took out were necrotic. So no testing. No til tcell treatments. He said I wasn't in good enough shape for til anyway.

Also the tiny needle kidney biopsy was also mostly necrotic so they can't tell what type of cancer it is. It did have melanin in it. But the scans show it was bigger than last month so it must not all be necrotic.


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On Wednesday, October 21st, the MRF will host its 1st Annual Wings of Hope for Melanoma gala at the Radisson Blu Aqua Hotel in Chicago.

Our Wings of Hope for Melanoma galas bring together local melanoma communities to celebrate recent advances in research and recognize local heroes with the MRF's Humanitarian and Courage Awards. Gala attendees play an important role in the fight against melanoma by raising awareness and much-needed funding to advance the melanoma research field.

On October 21st, we will present our Humanitarian Award to Dr. James O. Ertle, Assistant Professor of Dermatology at Rush University School of Medicine and honorary member of the American Academy of Dermatology. Additionally, the MRF is proud to present our Courage Award to Mike Gorman in recognition of his courageous fight against melanoma. We will also welcome WGN TV Anchor Dina Bair as our Master of Ceremonies . The event will feature cuisine from the culinary neighborhoods of Chicago, signature cocktails and unique auction items.

If you or a loved one are in the Chicago area, please join us! Tickets are still available and proceeds directly benefit the MRF’s mission to promote research, education and awareness of melanoma. Purchase your tickets at:

We hope you see you in Chicago!

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mrsaxde's picture
Replies 10
Last reply 10/2/2015 - 7:37pm

OK, I have a question for everybody.

I had my 4th cycle of Keytruda today, and the nurse told me that my veins are no good. Never had anybody say that before today. I only have one arm for them to use, because of the lymph node dissection from my other arm. She recommended that I contact my surgeon about getting a port.

So here's my question. Who else here is getting Keytruda, or another long term IV therapy who has a port? What are your experiences with it, and what is your opinion of it? My wife, who is an RN, says that since my treatment plan says I'll get Keytruda "until progression," a port makes a lot of sense. It does to me, too. But I don't know anybody who has or has ever had one. So if you have one, or you have had one, tell me anything you think I should know.


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