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.

Expand/ Collapse Topic
 
Replies By
View Topic
lkb's picture
Replies 6
Last reply 8/30/2018 - 11:33pm

I'm curious about the Dana Farber Online Second Opinion Program. They would look at all my records and answer questions without me having to go there for an appointment. Has anyone here done same with DF or another facility? If so, how was your experience? Thanks.

Lisa

October 2017 primary scalp WLE; SLNB removed and revealed two positive nodes in neck. July 2018 scan shows positive nodes same neck location. August 2018 partial neck dissection. Stage 3C. September 2018 started Nivo.

 

Login or register to post replies.

Hi family, quick question, when im on my computer (tower & screen type) here at MRF, and when im done posting my message, the reCAPTCHA blue circle thingy just keeps going round & round & round & round!! Doesnt give me a green check mark to confirm im human "or" even give me the option to choose pictures of street signs & what not. Is anyone else having problems? Iv been using my phone & it works fine so, its not MRF. Please reply if ya have any ideas how to fix or whatever...thanks guys..Mike

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 8/30/2018 - 2:43pm
Replies by: MMH, cancersnewnormal, Zap_

I was recently diagnosed with Stage 1 melanoma, atypical spitzoid.  The breslow depth was .6mm.  I am hoping to find others with Spitzoid Melanoma to better understand the behavior/prognosis/treatment for this specific type, since it sounds quite rare. 

I had a wide excision about ten days ago and the margins came back clear, but they did not do a SLNB and I worry that I should be pushing for this. 

Any advice would be apprecaited.  Thank you. 

 

 

MMH

Login or register to post replies.

almostalice's picture
Replies 1
Last reply 8/30/2018 - 1:24am
Replies by: ldub

I had a 3 month wait but finally the appointment came round. Punch biopsy came back as 0.9mm Breslow Clark's 3 looking like a nodular melanoma. WLE and SLNB to follow. The location is behind my knee and well vigilance works!

I had taken a photo a year ago of a new mole that didn't look classically malignant but was starting the change. To me on the photo on the day of the appointment it looks nodular.

Not too worried, more kinda at peace and assurred in my checking routine. Got it taken care of pre 1mm! Woooho!

Login or register to post replies.

Nick C's picture
Replies 2
Last reply 8/29/2018 - 8:46pm
Replies by: Bubbles, VinceMart

He gang...Because of side effects to liver (elevated enzymes), we canceled my last Yervoy treatment. We are now looking at a ERK inhibitor trial. My Onc wants to wait a least 30 days before we start in order for meds to get out of my system. My last scan still showed some progression. He wants to make it is "true progression" before we start. Fortunately, the office is less than 15 minutes from my home.

Hope everyone is doing well in their fight. Keep on keeping on!

Nick


Login or register to post replies.

melanomamafia's picture
Replies 7
Last reply 8/29/2018 - 5:19pm

Hello!

I'm new to this world of Melanoma. I work in healthcare and have for years. I have a tendency to research and read alot of studies because I think they are SO INCREDIBLY valuable and what some have scoffed at have turned into some of the biggest advancements in healthcare today.

That being said...

I found a mole that was new. Started out dark and then morphed into a pink/brown color. Seemed to get wider pretty quickly. After 5 weeks, I went and had a punch biopsy done. My PCP didn't think it was melanoma but I have a personal history of squamous cell skin cancer, as does almost every member of my family. Possibly some melanoma on my dad's side but my mom wasn't sure. Anyways, pathology came back as MM Clark's level II and depth of 0.38 mm. No ulcercation or mitosis. Margins are indeterminate and TILs are non-brisk. It is epitheliod and spindle celled. 

I know this is a pretty good report considering what it could have said. And I don't want to borrow trouble. But even with the mitosis of 0, I can't help but worry about how quickly this came and I know for a fact that it was new because of it's presentation. I have had some pretty weird symptoms that I mentioned at that same appointment before we even contemplated melanoma. He thought it was nothing and I thought it was nothing too. Those symptoms are hot flashes, being sweaty alot and then a short time later, petechial rashes that come and go, and aching in my right armpit that travels down my arm. I'm sure it's not related but I can't help but go there in my mind. What if I have mets and I don't know it? What if this is a secondary tumor and I missed the primary that is somewhere else? Ugh. This diagnosis all of a sudden turns you into a crazy person.

Here's my question:

I want to insist on a SLNB for my own peace of mind. My research says that the benefits outweigh the risks and if I'm willing it should be doable. Anyone ever insisted? Anyone ever gone from a 'mere' stage 1 to a stage 3 from insisting on SLNB when it wasnt indicated?

Please don't be harsh with me or shame me. My family history and the possiblity of 5-10% metastasis at some point is enough to make me be willing to sacrifice a chicken to put my mind at ease if needed. So what's a node or two?

Thank you for your replies. <3

Login or register to post replies.

RichInLife2's picture
Replies 5
Last reply 8/29/2018 - 5:10pm

Well, I just started my treatment yesterday. Had my first monthy dose of Nivo and so far (I know it's early) I'm tolerating it. I also have an appointment with a radiation oncologist next week to begin focal radiation treatment of the single met in my brain. I'm still trying to learn about the different types of focal radiation so I can ask intelligent questions when I meet the oncologist. It's hard to find unbiased comparisons of gamma knife vs cyberknife vs linear accelorator, etc. Any pointers to web resources would be helpful.

Anyway, currently stage IV with mets in brain, lungs and liver, but the doc says my overall disease load is low, so that's a positive (I'm looking for all I can get at this point). It's been a roller-coaster of emotions since my latest diagnosis, both for me and my wife, but I feel like we have a path forward now, whereever that takes us. Fingers crossed, etc.

Also, I asked a few days ago about the possibility of getting my treatment locally while getting my scans read and care managed at a more distant cancer center. Thanks everyone for those responses, Opinions seemed to be event divided betwen doing that and doing everything at a cancer center with melanoma experts. In the end, I decided to do everything at Dana Farber in Boston, even though that is a 5-7 hour round trip drive, depending on traffic. I felt it was important to get coordinated care and I hope I'll be getting that at DFCI. There were some mix-ups yesterday that they seemed to be genuinely embarrassed about, so I'll cut them some slack on that. This time.

Feeling positive today. As my wife has taken to saying, "watch out cancer, there's a new sheriff in town!"

 

 

Login or register to post replies.

almostalice's picture
Replies 8
Last reply 8/29/2018 - 5:01pm

Hey guys, I'm new but not new to the subject. Was diagnosed 2004, two primaries one was Nodular 6mm Stage 2C (T4b to be exact). Another primary found as in-situ SSM but not dysplastic 2011.

I'm from the UK and moved to USA. This'll be my first exploration in America for treatment.

I have watched an atypical progress behind my knee into what I think could be in-situ SSM but it already has the starting apperance of the nodular I have survived at least in part.

I called up a preffered derm however was given a 3 month wait as a new paitent. This will if positive by my 4th primary and my question really is should I wait the 3 months and take photos as evidence of evolution OR just get into any clinic regardless?

I'm not at all panicked and am numb to it which could be a bad thing or a good thing to get me through the wait. Any thoughts given the history?

Login or register to post replies.

Hikeratheart's picture
Replies 1
Last reply 8/29/2018 - 5:20am
Replies by: Anonymous

Hi everyone, I have religiously followed this forum for 3 years since being dx with melanoma on my upper arm. 4.5 mm thickness, no lymph involvement, so very grateful. I also had a thin melanoma removed from my back at the same time. So I guess I had 2 primaries. I am watched, and also watch myself very closely, and have had approx 6 MOHs surgeries on my face(3 were done b-4 my dx in July 2015) 

Well, this Friday I will have a biopsy on my R lower eyelid. In June I noticed what I thought was a stye on my lower lid, but it persisted so when I saw my Derm , well, She took one look and said, "I think it's a Basel cell." I've been referred to a surgeon, who specializes in eyes, and will get a consult and likely a biopsy. I'm pretty scared about the location, being my eye and all, and am also worried when I have the surgery about how much of my lid will be taken, & will I reconstructive surgery. 

Looking for support and anyone that can share what I might be in for, have you had this experience, can you please share.

thank you ad min, and all the lovely folks on this forum. I have been soothed, educated, talked off the cliff, etc, ....and all because I feel you are here. So grateful for all of you, strength and love to all who are fighting. Kathy

Login or register to post replies.

KellyH's picture
Replies 11
Last reply 8/29/2018 - 2:49am

Hi everyone!!! I was wondering how everyone feels about Nivo monthly versus every 2 weeks??? My son is currently on the every 2 week regime...he is doing pretty well. Minimal side effects, little tired and some occasional abdominal cramping.  Our doctors discussed possibly switching to monthly at the 6 month mark. I know it’s double the dose then and i was  just wondering if Anyone has done this and how they responded. 

We are about 4 months in now. He just had  his 7th treatment last Tuesday and then on Wednesday I dropped him off at college to start his freshman year. He plays college baseball and the practice schedule has been pretty intense the last few days and so far he is hanging in there and not having any issues. I was worried about it all catching up with him but so far so good!!!! 

I will admit, I am struggling with him being away...he is only about 45 minutes away which is not horrible but not seeing him everyday to know he’s doing ok on treatment is going to be tough. The doctors gave him very specific instructions on what to watch for while he is away.....I guess letting go is just that much harder for me now that we have a melanoma diagnosis in the mix. 

I want to try to keep his routine as normal as possible, especially with this being his first year of college...and monthly infusions would definitely be more convenient for his schedule...but I’m afraid to “rock the boat” so to speak...

Kelly :) 

 

Login or register to post replies.

MelanomaMike's picture
Replies 5
Last reply 8/28/2018 - 11:07pm

Hello extended Family, and welcome to the few "new" folks we have now, i mean, its bitter sweet & wish we never had new folks due to desease Remission and or a Cure...
But i digress, im feeling ok, just the normal aches & groans, knees are weak, but im ok, next Tuesday is my 1st infusion of Opdivo "without" its companion Yervoy so, ill be IN & OUT! lol...love ya guys, take care...Mike

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

newmanmark's picture
Replies 19
Last reply 8/28/2018 - 10:57am

I have been on the Ipi/Nivolumab treatment since December.  During the combination portion of the treatment several patches of facial hair turned white.  Now that I am on the Nivolumab maintenance phase I am now starting to develop depigmentation on my hands, arms and face.  For those who have had similar side effects did the vitigilio progress and get worse over the course of the treatment or did it tend to stay in the spots where it started?  I know it's a good sign that the immune system is active but im not excited at the thought of it spreading everywhere.

Mark

Login or register to post replies.

I do not know if anybody experience this problem with lymph nodes.
I am on six month scan. A year ago lymph nodes in my neck increased, six months after it decreased, and now increased in size again. I have a cyst with pus on that side. My oncologist wants me a scan of my neck in 3 months now. He doubts it is cancer but said we have to watch. Did anybody have that experience and has a knowledge about it? I would appreciate your answer.

Login or register to post replies.

mbrrna's picture
Replies 2
Last reply 8/27/2018 - 8:29pm
Replies by: mbrrna, Bubbles

Mom had acral lentiginous melonoma on her foot, which spread to the groin/abdominal lymph nodes, but no organs. Had WLE in February, and just finished her eighth Keytruda. Past scans have shown stable disease, however her latest chest CT states the following:

"Interval progression in peripheral reticulation within both lungs suspicious for progression of post radiation changes or possibly drug reaction. A few small mediastinal lymph nodes have slightly enlarged in the interval and may be reactive to parenchymal changes."

Mom's never had radiation so the Dr thinks it may be related to Keytruda. I've tried researching, but I don't understand what reticulation or parenchymal means.

Has anyone experienced this and could explain what it is? The Dr is repeating the CT in six weeks. Could this mean the end of Keytruda treatments?

Thank you!

Amanda

Login or register to post replies.

Pages