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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Shelby - MRF's picture
Replies 8
Last reply 11/4/2019 - 1:14pm

Dear MPIP Community,

Happy Halloween! I wanted to let you know about two important items happening with our education program right now:

1. The MRF is in the beginng stages of creating improved resources related to Melanoma Survivorship. We are working with a consulting firm to conduct a "needs assessment", part of which will include a survey of people who have had a melanoma diagnosis (any stage, any kind, any year) and their caregivers. I would be honored and so thankful if you would take the time to participate in our Survivorship Survey, as well as share the link with any patients or caregivers you know. Your feedback and insight will help us build a meaningful set of resources and information, and will also help the healthcare provider community better understand the needs of the melanoma survivor community. We are also looking for melanoma patients to participate in an interview with our consulting firm. If you are interested in sharing your experiences in that way, as well, please contact me at

2. As you may know, we are continuously adding educational webinars to our portfolio of resources. We have recently recorded a mucosal melanoma webinar series, as well as a monocular vision webinar series. I invite you to view these webinars, or webinars on other topics on our Educational Webinars page. 

If you have any questions about these items, or anything else, please don't hesitate to contact me at!. Thank you for all you continue to do to help the melanoma community.


Shelby - MRF 

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Cindy Lou's picture
Replies 4
Last reply 11/1/2019 - 12:42am

I am currently in the hospital being treated for pancreatitis. The docs say it is unknown origin because the 2 main causes are drinking alcohol ( i dont drink) and gallstones ( i dont have a gallbladder). They say gallstones can still form without a gall bladder but they didnt see any on ct scan. The gastro doc wants to do an endoscopy after the pancreas has healed to see if there are any lesions. When I had PET scan two weeks ago, inflammation of pancreas showed up. That was a week before the intense pain started. I understand that metastasis to the pancreas is rare but it seems weird that I have this now.

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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stevek1959x's picture
Replies 3
Last reply 11/8/2019 - 10:27am
Replies by: Anonymous, RichInLife2, tedtell1

Just had my 4 months scan which came back NED. I happened to look at the Doctor's notes on my patient portal and discovered that I am classified as Stage 4. I remember asking my onco early on what my stage was and I could swear he said 3C. I get copies of all the pathology reports which have some of their own classifications for tumors but never specified a stage. I had 5 lymph nodes which were all located in the left axilla that came back positive. M;y own assessment was this was Stage 3C. I guess it doesn't make any difference at this point but it sure makes a case to get all the pathology reports, scan results and clinic/doctors notes and review them yourself rather than having the info conveyed during your 30 minute appointment with your onco.

As a quick update (you can read my profile), the lichen planus finally was resolved after 15 days on 30mg prednisone. The vitiligo seems to have quit spreading although neck, arms hands, face have extensive patches (neck is completely white). 4 months into UVB light treatment and I haven't noticed any re-pigmentation (said it could take 6 - 12 months). Kidneys functions are normal after they got "wacked" 11 months into treatment. A new glitch, I am now Type 2 diabetic on insulin. This flared up while on prednisone. My A1C suggests that this may after started 11 months into the Nivo treatment and my body was compensating to manage the glucose. The prednisone pushed me over the edge. In discussion with my onco, It looks like the immunotherapy kicked into high gear during the last month of treatment and the timing of most of these issues zeroes in on that time frame. He informed me that they might be doing a study which looks at the effects off immunotherapy. I quickly said sign me up as I have certainly had my share of issues. As a message for folks new to melanoma, I told my onco that with all of the issues I had, if I had to do this over again (considering the complete lymph node dissection), I would still opt for the immunotherapy. That's it in a nutshell. Now to sweat out the next 4 months waiting for the next scan.

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NervousDude's picture
Replies 4
Last reply 10/31/2019 - 5:33pm
Replies by: NervousDude, Anonymous, tedtell1

A while back my Wife noticed an odd little mole on my neck, we weren't sure what it was because I am prone to skin tags in that area and ever so often I mutilate one on accident while shaving. I had my PCP do a biopsy of it, then I just never head back from his office so I assumed it was nothing. While in for a routine appointment today I asked for the results out of curiosity. I was told that it was a Compoun Melanocytic Nevus with mild architectural atypia. My physician didn't seem worried and said just make sure it doesn't come back, but I didn't get much more information and am still a bit confused.

The full report says;

Gross description
Specimen is received in formalin, labeled with multiple patient identifiers and consists of one piece of tissue measuring 0.1 x 0.1 x 0.1 cm, irregular in shape and tan brown in color. The margins are inked green. The specimen is submitted in one cassette.

Compound Melanocytic Nevus with mild architectural atypia, extending to the biopsy margin.

Clinical correlation/follow up is recommended.


I'm not sure what to make of all this? Is it a skin cancer of some sort? Just a slightly weird mole? I also remember the thing being a bit different in color than what the report says, I recall it being darker.
I may not even be in the right place to be asking this question, and if I'm not I sincerely apologize. I simply saw melanocytic in the diagnosis and thought perhaps someone here might could explain better what I'm looking at.

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jennifer83's picture
Replies 15
Last reply 11/7/2019 - 1:55am

I had a suspicious mole in 2014 that turned out to be Stage 1b. WLE and SN biopsy and it didn't spread.

I noticed a new lump on my neck about three months ago on my drive to a new home in a new state. Since I've been here, more lumps have popped up in odd parts of my body (stomach, forearm, hip).. small pea sized lumps. My family and I are working on this huge move and I just started a new job and do not have insurance in my new state (TX). I noticed a lump in my breast three weeks ago and flew home to CA where I still have insurance through the end of October. After a mammogram and ultrasound, they found two lumps in one breast and another in the other breast. They did a core needle biopsy and I got the results yesterday - Stage IV metastatic melanoma. I am 36 years old.

I'm in shock. I'm shaken. My CA doctor is afraid that all the other lumps are also melanoma. I'm luckily in the Houston area where MD Anderson is, but my insurance doesn't kick in until Nov 4th. I have a new job and my bosses are not very warm people and am so afraid of being fired for taking time off so early in my employment over this. CA is over-nighting my medical records and images. I'm waiting for MD Anderson to call me back for in-take, but am afraid that they won't see me until my insurance is valid.

I guess I just needed a soundboard. My husband and two babies (ages 2 and 3) are still in CA. We're in the middle of escrow on a home in TX and they are waiting back there until it closes before they come out. I just want to be with them now.

Any advice on treatment, insurance navigation, next steps is very welcomed.


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klalfaro26's picture
Replies 4
Last reply 10/29/2019 - 6:44pm
Replies by: Anonymous, Christiane29, doragsda

Hello. My name is Kristi. I was diagnosed in early 2016. Stage 4 right off the bat. I did Ipi/Nivo. Complete response but it returned later back,in my lungs. We then tried Keytruda which again gave me a complete response but had to stop after 7 doses due to being diagnosed with Lupus and having severe joint pain. I then did scans every 3 months and then eventually every 6 months. Since then everything had been fine up until a month ago. I should probably mention that my birth control didn't do its job as I found out I was pregnant in August. I'm currently 15 weeks.
Anyways, I started having pain in my back left side just under my lower rib about a month ago. Thought it was nothing for a couple weeks until I was laying in bed and I felt a very hard lump in that same area. Obviously panicked I called my oncologist who then sent me for an ultrasound. The report he got back said there was only a small suspicion of it being cancer. Basically it wasn't even an answer at all. So then he said we'll get back to you after I talk to the radiologist to see what else they can do given that I'm pregnant so scans aren't an option. A week later I finally get a response back and he said we'll wait it out and to let him know if the pain gets worse.
I'm beyond frustrated and my anxiety is at an all time high and I don't know what to do. Do i really just ignore it and cross my fingers and hope for the best? Or do I push to get more answers? I was kinda hoping they would do a biopsy because I know that is safe during pregnancy. I just feel like I need a better answer than what they gave me. Yesterday I noticed a feeling that that lump is pushing into my ribs when I was sitting on the couch. So that is new. This all has made it hard to sit or even ride in a vehicle. Its better when I just lay flat. I just don't know to do. But I feel like I would be a bad mother if I just sit on this and wait knowing that I could potentially be letting cancer just spread throughout my body like it did before. I'm scared because this lump mimics exactly like the one I had on my shoulderblade when I was first diagnosed. I felt pain and then I felt a hard lump. A dull ache pain just like that one.

What do you all think I should do? I feel like I'm being pushed to the side because I'm pregnant and they know they can't use the treatments on me. Do i push harder for an actual answer? Or do I just hope for the best?

Just thought I would also mention that no one has even felt this lump for themselves or ran bloodwork.

Any advice is greatly appreciated. Thank you.

Kristi A.

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DZnDef's picture
Replies 9
Last reply 10/30/2019 - 2:52pm

Hi all, I’ve been off the board for quite a while and now find the site is totally different and my profile is gone. What gives? Does your profile get deleted if you don’t post for a certain amount of time? Oddly feels like someone decided .I didn’t make it. Do I need to recreate my profile from scratch?
Glad to see many familiar usernames posting. Still dealing with brain mets myself.

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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daddysdaughter34's picture
Replies 7
Last reply 10/30/2019 - 11:11pm

My dad deals with the VA and they tend to drag their feet on setting up appointments. He had to have a kidney removed due to cancer and it took almost 4 weeks just to set up the appointment for the biopsy so I don't want this to drag out either. I have been told by the dermatologist this is urgent to take care of but i'm not sure how urgent is urgent. This was the pathology report of the biopsy done 2 weeks ago that we were notified on Friday afternoon, Dermatologist put in referral for general surgery and oncologist but not sure when I should start hounding them for appointment. Also does this mean he has Stage 3 Melanoma Cancer? Thanks in advance for helping, My dad is 71 years old and has CLL and renal cell carcinoma,

skin, right chest, SED&C --- invasive squamous cell carcinoma
skin, right dorsal forearm, punch - basal cell carcinoma, infiltrative type
skin, left chest, shave ( this one is the one they are concerned about)
Malignat melanoma, unclassified type
Breslow depth at least 2.5mm
Clark level at least IV
growth phase vertical
host response present non brisk
Regression present
Mitosis per mm 2-7
Satelitosis cannot access
Lymphovascular invasion not identified
Neurotropism not identified
Ulceration absent
Peripheral surgical margins negative on examined sections
Deep surgical margins positive for invasive melanoma
Stage at least pT3a

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Nympha's picture
Replies 2
Last reply 10/30/2019 - 4:03pm
Replies by: Nympha, Bubbles

Hello.. Tell me there are ppl who live with this teraphy longer than statistic says...
My father is taking it from 03/2019 and he has some strange feeling his small bump on belly is starting to grow slowly... :-(
Thank u..

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Cindy Lou's picture
Replies 13
Last reply 10/29/2019 - 4:01pm

The testing on the melanoma removed in Sept indicates the it now has the BRAF mutation. Prior testing back in 2015 was negative for the BRAF mutation so my new oncologist said she was quite surprised at the new finding. Has this happened to anyone else?
I will be starting radiation to the right side of my face & neck on Nov 4th. Getting the mask made on Monday. I am wondering how bad the side effects will be. Any info will be appreciated. The radiation doc made it sound like I won’t be able to eat much after the 2nd or 3rd week.
After radiation treatments, in January, I will begin taking Taflinar & Mekinist. Doc said to expect high fevers. I would appreciate your comments on your experience with these drugs.
Keep up the fight, my friends!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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mrhubahuba's picture
Replies 9
Last reply 10/28/2019 - 9:42am

Just had my first Dr visit after 2 weeks on the braftovi/Mektovi combo. Since my next scan isn't till December, the doctor said they measure effectiveness of drugs by the LDH levels. Well my LDH levels dropped from over 3000 to 600 in 2 weeks and my liver with over 100 lesions on it was pain free even when Dr Weber was pushing on it fairly hard. I actually feel great and would say I am at about 95% except for some minor rashes that itch a little. Just hope this keeps up! I am hoping these tumors disappear as quick as they appeared. Good luck to everyone on the board and you guys are a real inspiration to me, thanks.

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Mom1021's picture
Replies 2
Last reply 10/28/2019 - 9:25pm
Replies by: SABKLYN

Hi All,
Does anyone have a recommendation for a Dermopathologist who specializes in melanoma slides? I am located on Long Island, NY and close to NYC. Was thinking Sloan Kettering? I’ve already been treated, but would like some clarification from my original slides. I understand I would be paying out of pocket, as long as I can get through the barriers of trying to get someone to accept my slides for a consult only.

Thank you!


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BrianP's picture
Replies 8
Last reply 11/2/2019 - 8:00am

Pretty interesting stuff. Would be so cool if this does indeed result in improved responses.

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Cindy Lou's picture
Replies 6
Last reply 10/27/2019 - 12:08pm
Replies by: Cindy Lou, Rond, JudiAU, Affected

Hello, friends! I had 2 surgeries in September to remove melanoma from my neck and from underneath my jaw bone. PET scan done last week shows more melanoma in the same area. So, I will begin radiation traetments to the right side of my face & neck the first week in Nov. I was surprised to learn that a mask will be made for me which I will wear when I receive the radiation. Just in time for Halloween, right? Has anyone else worn a mask for treatments? I am wondering if I will freak out!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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Mom1021's picture
Replies 3
Last reply 10/25/2019 - 1:43pm
Replies by: Julie in SoCal, Mom1021

I have a pathology question. I’m hoping someone on this forum can help me.
I’m very confused about my diagnosis that I was given in August. I have a shave biopsy done that came back AIMP, with being consistent with Melanoma In Situ. I then had it surgically excised and path came back clear margins and residual
atypical cells. I was told by surgical oncologist the he “feels I had an atypical mole but “they” are calling it a melanoma so I’m going to treat it like a melanoma.” He has me coming every 4 months for re checks along with my dermatologist who wants to see me every 3 months for full body exams. I just feel very unclear. Was this a melanoma in situ or AIMP? When I addressed my concerns to my dermatologist he said well we would have treated this no matter what we would never have left it. I’m not questioning that, because I’ve learned that sometimes an Invasive melanoma can be found. And on my original path from shave it said that it could not be ruled out. So, my question is was it or not? This has me going nutty. Should I have my slides sent and retested just to be clear? I would pay for this from an lab that specializes in this. I just feel really being on my own with it and being my own advocate.
And information would be greatly appreciated.

Thank you, Christina Hafner

I have screen shots of my path but I don’t see where I can upload them to. I do feel seeing the correct terminology would be helpful.

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