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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kareylou's picture
Replies 8
Last reply 7/15/2019 - 5:54pm
Replies by: kareylou, Debbiemartis, kst

I have been newly diagnosed with melanoma. I had a spot check in May where the nurse practitioner took a biopsy of a suspicious mole. It was found to be melanoma (1.2mm). Surgery and sentinel node biopsy was scheduled for next week. Since they hadn't done a full body scan, the dermatologist scheduled me for that . At that appointment, they found 2 other spots on the same arm that turned out to be melanoma as well (.3mm & .7mm). I haven't found any information from anyone who has had this occur. The two sites are quite close to one another and the third is about 6 inches from them. The surgeon (who hasn't seen the location of the two additional spots) has agreed to at least remove the one closer to the original one and do another sentinel node biopsy. I am hoping she will also agree to do the wide excision surgery on the third (due to a snafu, she thought the third was on my back).

Has anyone had more than one wide excision surgery at once? I know the surgeon cannot remove the original one as planned since the newly diagnosed (.7mm) one falls right outside the 2 cm margin she was going to make. Do I assume she will probably take both with large margin that may require a skin graft?? I am praying hard they won't find cancer in the nodes as I am terrified of removing all my lymph nodes. Trying not to get ahead of myself. Thanks for any information anyone may have.

Karen

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NewEra's picture
Replies 1
Last reply 6/21/2019 - 5:31pm
Replies by: Edwin

Hi there!

Sorry to post before I have true confirmation of recurrence, but I'm curious about other's experiences with lymph nodes. Here's my story:

9/2017: Mole removed on rt. thigh and left upper arm biopsies as 1B and 1A respectively. Wide excisions on both, with sentinel node biopsy from rt groin shown as negative. I had some lymph edema to deal with, but otherwise no elongated side effects. No additional treatment was recommended.

21 months later, (2 weeks ago today) I detected sensitivity in my rt groin and found that a lymph node directly under the incision site of the sentinel node was palpable and tender. Next day I had a sonogram and CT scan of the leg and a chest XRay. CT scan showed inflammation in the lymph, but XRay show an incidental finding of a 1.7 cm nodule in the rt. lung. (X-ray from 11 mons before showed no nodule). Chest CT showed the mass was solid; PET had lung and groin lit up. Biopsy scheduled for next week.

Here's the thing: PET was Monday. Weds evening I rolled over in bed and felt something tender on my rt. ribs. Found another lymph node had flared out of nowhere. Same thing that happened with the one in my groin. there was NOTHING 2 days before - no tenderness, no lump - and the reason I know (don't laugh, ladies!) is because I did the "Big Shave" on Weds, and this sucker started hurting Friday afternoon - after I had spent most of my telework day in the lotus position trying to loosen up my hips. I know there was nothing on my ribs because (again, ladies, try not to snigger!) the sucker is right on my bra line and is damned annoying! Wasn't there in the am, wasn't there when got changed for bed and set my double-Ds free. Next day wearing a bra was agony!

Lymph on my rib did NOT flair on the PET, so that's the mystery - what the heck could flare up that quickly?

So - do lymphs flare that quickly from melanoma? Or is it possible there is something ELSE going on? Pulmonologist appt yesterday - 12 hours after rib lymph showed up. Dr. confirmed palpation. Dr. says there are benign nodules that flare up on a PET, so I'm hoping that it is a melanoma false alarm, but why haven't they put me on an antibiotic?

Will keep you posted either way on the biopsy results....

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Edwin's picture
Replies 7
Last reply 6/23/2019 - 2:17pm

Runners World article:
https://www.runnersworld.com/runners-stories/a28071717/kristina-baum-run...

I ran 10 miles this morning. Like Kristina I have stage 4 melanoma and receive Opdivo immunotherapy.

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On Tuesday my husband received a call that his biopsy came back as Melanoma. That evening my husband went up to the office to have his stitches removed and the P.A. gave him his pathology report. She didn't say much to him besides don't google and freak yourself out. She told him it was the beginning stages, not very deep, probably superficial spreading Melanoma. We have been referred to a plastic surgeon for a wide local excision and sentinel node biopsy. My husband's consultation appointment is Monday. In the meantime I've been trying to wrap my head around all of this and gain as much information to prepare myself for whatever lies ahead. In my opinion the pathology report seems very vague and I am confused if the margins on the biopsy were clear. I'm not too certain on what I am supposed to. Is it normal for a us to be referred to a plastic surgeon? Do I find an oncologist as well? I will post the biopsy report and any information or help will be greatly appreciated. I don't know if I am overreacting but I am terrified. My husband is 33.

R. Inferior medial midback, biopsy by punch method

Melanoma, spindle cell type, coming to within 0.5mm of the biopsy margin arising in Melanoma in Situ, Involving the biopsy side margin
Breslow depth: 0.64
Clark level: 4
Mitotic rate: approximately 1 per mm squared
ulceration: not identified
tumor infiltrating lymphocytes: not identified
microsatellitosis: not identified
lymphovascular invasion: not identified
perineural invasion: not identified
regression: not identified
macroscopic satellite nodules: not identified
pathologic stage: pt1b, nx,mx

Microscopic description:

There is a population of atypical spindled melanocytes in the dermis. An epidermal proliferation of melanocytes is also present with pagetoid spread. The biopsy margins are free. Intradepartmental consultation was obtained.

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AndyZ's picture
Replies 2
Last reply 6/21/2019 - 6:54pm
Replies by: AndyZ, Bubbles

My father has had mets in lungs and brain (in both sites very small, less than 2mm size). Dealt with mekinist and tafinlar combo and cyber knife. After some NED period he was unable to walk -without any pain. After some tests (Ct scans, MRi, bone morrow biopsy, ultrasound, etc) the doctors believe that a few cancerous cells are present in the fluid in the lower spinal cord. (not yet a definite answer-waiting for the biopsy report). Have you had any similar experience? any advice on what to expect? Is there any hope

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jennunicorn's picture
Replies 21
Last reply 6/25/2019 - 10:08pm

Hi friends new and old!

I am not on here as much as I used to be, due to work and life being busy with lots of non medical issues for once (finally). Wanted to share an update that I had my regular scans last week and it was as boring as ever. Never seen the word "unremarkable" written so many times on one report. With each scan this whole survivor NED thing gets easier and makes life feel a little more normal again.

I am sure I have mentioned my issues with fatigue that have continued long after treatment ended. I deal with major daytime sleepiness, feeling like I am never rested, feeling like I am in a brain fog a lot, and get migraines a lot more than I ever used to. After a year of blood tests, different specialist visits, couple surgeries, I finally decided to get a sleep study done. My PCP and I were thinking the sleep study would be the last resort as I don't snore, I fall asleep and stay asleep well most nights, and don't have any other factor that would indicate a sleep disorder other than being super tired all of the time. I spent the night at Stanford a couple of weeks ago. Was quite an experience, takes forever to get hooked up to all the wires and such. The room was very nice, just like a nice hotel room. Comfortable bed. Fell asleep as they recorded all the data. Well.. drum roll.... I have obstructive sleep apnea!! Mind blown!! It's not super bad apnea but enough for the sleep specialist to recommend I start on CPAP therapy. So, this is gonna be a new weird thing I have to get used to. Haven't gotten the CPAP machine yet, but I am really looking forward to feeling the difference once I start using it. No clue when this sleep apnea thing began. I was never like this prior to treatment. Is it related?? No clue, probably not, don't see how it would be. In any case, for those of you dealing with any of those sleepiness-brain foggy-crappy-feeling symptoms I've been dealing with... I would say it wouldn't hurt to get a sleep study! You just never know. I am grateful to have a real answer to this problem besides taking drugs to give me energy.

I am always thinking of everyone who is currently going through the trenches, those of you newly diagnosed and scared, and those veterans who continue to be rock stars in the community.

Hang in there if you're in the rough of it and keep rockin if you're wearing your NED badge too.

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Anonymous's picture
Anonymous
Replies 0

Hello... my coworker in Virginia Beach has a mole on his stomach that has been changing. He was referred to a derm but they can’t seem him until late July. Does anyone have a dermatologist they would recommend?

Thank you.

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Julie in SoCal's picture
Replies 1
Last reply 6/20/2019 - 4:47pm
Replies by: Julie in SoCal

Hi friends,

This is not new news on immunotherapy side effects, but it's presented nicely in one link: https://www.cancer.gov/about-cancer/treatment/side-effects/organ-inflamm...

Shalom!
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Anonymous's picture
Replies 3
Last reply 6/20/2019 - 11:42am
Replies by: Bubbles, mary1233, Anonymous

Hi,

I have a history of dysplastic nevi in thigh and buttocks area following a burn 7 years ago. One of the moles had severely dysplastic. I have very few moles in my body and the 5 that were dysplastic were all new moles. Ranging from mild to mild-moderate and lastly moderate-severe (this one was all pink almost looked liked a mosquito bite).

Anyways I have been having vaginal pain for the last 3 weeks and even visited a OBGYN-oncologist. Today I had a vaginal ultrasound and all organs looked Ok, but I noticed when they moved the wand toward one of the walls that was were the pain is coming from, almost as if I have something on the skin of the vaginal wall. OBGYN has done examinations with hand but hasn’t actually looked in there with a light. Is this how vaginal melanoma would be found? And can it go deep down inside? I’ve been reading it’s mostly vulva and outside but I’m unsure... will not see the OBGYN until next week.

My question is what were the symptoms for vaginal melanoma and how should it be diagnosed. I’ve been to OBGYN oncologist twice already but I feel He’s overlooking if not looking inside visually. I have a CTScan of the Urinary Track tomorrow for other reasons... would vaginal melanoma be seen in a CT Scan?

Thank you!

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browndog319's picture
Replies 4
Last reply 6/26/2019 - 11:39am
Replies by: regwash, browndog319, Anonymous

Hello to all of you. I felt funny posting while waiting for biopsy results...like why go there when I don’t know, right?
On 6/10, I went to the derm for a rash on my arm (turns out it was because of my watch). While I was there, he talked me into an all-over body check because I’m 47 with fair skin, green eyes, some moles he could see... I clearly spend time in the sun from going to my daughter’s lacrosse games although I’m good with sunblock.
On my back, underneath where my bra straps or bathing suit straps would cover it up, he said “oh, I don’t like the looks of that.” He whispered to his assistant that we needed to rule out melanoma.
Because it was a shave biopsy and I didn’t see it, I convinced myself “hey, it’s probably not it. If it is, it’s early.”
I share custody of my daughter with her father so I didn’t have anyone around to clean the site last week. I did it awkwardly, the best I could. But I still had no visual. I couldn’t really get one in the mirror.
Last night my daughter did it for me and took a picture.
Now I’m scared.
It was the size of at least 4 pencil erasers. And there is still mole there. Multicolored.. I can see myself that the edges were wild. And if I’m honest, my back has been itchy for months, maybe longer. I wrote that off to dry skin caused by the heat in the winter.
And there is still mole there. The doctor told me that I should have results by 6/24.
He also said, “you seem like a very nice woman.”
I thought that was an odd thing for a doctor to say. He was a nice man. But now looking back I’m wondering if he knew - this was after he took the biopsy. I felt like he was feeling bad for what he knew he was going to have to tell me.
He also took a spot from behind my ear.
Is this normal to have something remaining post-biopsy? Am I freaking for no reason?

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Newmanbell's picture
Replies 2
Last reply 6/21/2019 - 5:22pm
Replies by: Kelley888, QuietPoet

I was just diagnosed with melanoma in situ and it comes out next week. My question is how many of you had a recurrence? My husband is also Stage 3b melanoma and just finished 18 months of Opdivo. Can't believe I have it now too. The melanoma is 1.1x1.1x0.6 cm is that large?

Thank you for listening. Donna

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Carlsbad317's picture
Replies 3
Last reply 6/18/2019 - 10:22am
Replies by: jbronicki, marta010, MelMel

As the side effects separate one from being able to “live”- and the question of quality vs quality echo- what words can a caregiver/family give to the one wanting to give up?
From 100% active and full of life to basically lifeless due to the fatigue, dehydration, thrush, perceived inability to swallow due to radiation near throat... in a nutshell “severe toxicity.” Again....
The feeling that the tumor is bigger and physically you are getting smaller. The lack of wanting to understand immunotherapy takes time. And three treatments - now the hopeful benefits will start showing.
My dad can barely move from one room to another- four hours a day at the clinic for IVs of saline, potassium, nausea and the last one escapes me. He is done emotionally-
Sympathy -Empathy -Support -Holding his hand -Positive Reinforcement- Reminders he is all most done....
Are all words and actions that almost make it worse for him.
Are there words? We have told him it’s a process, we have encouraged him to not make decisions such as stopping treatment on a bad day- wait for a day that you feel OK- then tell us you want to stop.
For everyone on the forum and all that consistently share their wisdom and experiences I am very grateful- this page is amazing.

Hanlon

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JustJaren's picture
Replies 3
Last reply 6/20/2019 - 11:06pm

Hello All!

I know that this can be a place of warranted fear, worry, etc. but what you do not see often is the GOOD news.
Generally once people have recovered from their initial surgery/diagnosis/treatment, if they are lucky enough to not see the beast again, they just go on living and do not come back to post.

Well, even though it has only been 29 months, I wanted to update for those newbies just getting here, afraid and bewildered.

I have not posted in more than 2 years because I have been lucky enough to stave off the beast.

For the purpose of this post:

I was diagnosed with a .86 melanoma on my thigh in January 2017. After a wide excision and a sentinel lymph node removal, I was bumped up to a stage 3C, as they found a few cancer cells in the sentinel node. After much research, consult with a melanoma specialist and some deep thought, I chose NOT to have the full dissection. I continued to have the scans every 3 months, where my thyroid kept lighting up. Previous to the mel diagnosis I had discovered nodules on my thyroid and a biopsy came back benign, so the first time my thyroid lit up no one thought much about it. 12 months later it kept increasing in uptake so we went 0n for another biopsy. This one came back inconclusive. After 3 inconclusive biopsies I decided to have my thyroid removed. That was August of 2018. Turns out it was very early stage thyroid cancer. We removed half my thyroid and I will be on meds for the rest of my life.

Thankfully all other scans have come back clean. I "graduated" to scans every 6 months in January. I will get my next follow-up scan the first week of July.

Anyway, I wanted there to be a post, for that newbie like I once was, to see that not all stories end up with medicines, continued surgeries, lymphedema, etc.. Sometimes things go as well as can be expected and we just go back to living. :)

Does that mean I am out of the woods? Of course not, but I have made it this long recurrence free and am so very happy that I have. I wanted someone else to read this and have the hope that they too, will be giving an update in 2 years that life continues to go on, happy, fulfilled and as normal as possible. Just know that right now you are devastated, but once I recovered from my initial surgery and the debacle with my wound popping open, my life slowly got back to normal and yours will too. My husband and I will be taking our first vacation since the diagnosis this August and have a trip to Jamaica planned later this year for my 50th birthday.

I hope I am not back seeking support, but instead, continuing to return to offer my support.

Carry on warriors! KEEP HOPE ALIVE!

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MelanomaMike's picture
Replies 2
Last reply 6/18/2019 - 11:19pm
Replies by: BrianP, Bubbles

Hi guys, i imagine some of you may know and have experience in this, does either a Colonscopy or a Endoscopy reach the Jejunum area of the small intestine? Apparently thats where the "light up" occured in my CT & PET scans...any word on this would be appreciated, i couldnt find any answer on the web, Mayo, Amercan Cancer etc...thanx

Im Melanoma and my host is Mike..

www.covvha.net

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Gene_S's picture
Replies 8
Last reply 6/28/2019 - 11:42am
Replies by: Anonymous, mary1233, Bubbles, Gene_S, Edwin

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