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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curious12's picture
Replies 4
Last reply 5/2/2019 - 1:23pm

Hi! I have had melanoma in-situ and so has my sibling.  I have probably had 50+ moles off since ranging from benign to severely atypical (most mild atypica or benign)

My son is 13.5 and has a small/medium mole on his back. It was a tiny light speck in 2014 and now is 4-5mm dark brown but getting darker. It seems to be changing a bit more rapidly than his other moles but not alarmingly so. It's really his only one on his back. I am inclined to remove as it's coming up on puberty and hard to watch, sun will hit (it's on his shoulder blade so also hard to cover with spf)

Is that reckless of me to just remove a seemingly normal mole? Should I just have it punched out and be done or have his derm check it with a dermatoscope and if it's fine under that, then leave it. I am sick of checking it and looking at it... one day it looks normal to me and then under other light it looks dark and I want off. My gut is it's atypical....

Trying to balance my anxiety with being proactive and thinking of the future (Back, hard to see and my history) but I realize it's a slippery slope. He has new tiny blackish one on leg- so maybe I should focus on that lol

 

Thanks!

 

 

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jc2dad's picture
Replies 4
Last reply 5/9/2019 - 6:15am
Replies by: jc2dad, MarkR, Bubbles

Subungual acral lentiguous in July 2017.  Amputation of middle digit on left hand, removal of nodes in trochlear and axillary region on left side.  5 cancerous of various stages.  Started on Opdivo in January 2018. Ruptured appendix in March.  Fairly significant joint pain.  PET showed uptake in axillary and subclavical region in December 2018 (16 months NED).  Surgery to remove rest of axillary and all remaining local nodes in side and superclavical region in February.  1 of 36 nodes was positive.  Began Yervoy in April, within a week had developed acute hypophysitis, 4mg Dexamethasone 4 x daily to keep headaches and diziness at bay.  Levothyroxine 1x a day, and a super-strong antibiotic for the extreme thrush.

 

Here is what is going on now.  I kept getting told they are going to get me with an endocrinologist, but nothing yet.  Body temperature will not regulate itself, zero energy, very little sleep, hives, thrush constantly, insatiable appetite.  (30 lb weight gain in 2 months)  Dizzy and headache every 4 to 5 hours, particularly if Dexamethasone is not on board.  Libido non-existent, cognitive function and memory noticeably impaired, bowel function irregular.  Pretty much feel miserable everyday and completely worn out.  Started ambien for sleep but no real effect.

Obviously pulled me off the Yervoy after only one treatment.  Said it is not an option going forward.

Also had surgery on right arm to remove a melanoma Stage 1 in March.

Any advice would be appreciated.

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Bubbles's picture
Replies 13
Last reply 5/5/2019 - 1:32am

9 years ago today I had the right upper lobe of my lung removed after having had radiation to my brain 3 days prior.  Since then I have worked to live ACTIVELY!  My dear B would say I was never "inactive" to start with, but I mean with intentional, ACTIVE, appreciation for my days, my peeps, and the beauty around me.  I am not perfect and neither is every day. But, I can usually find something to enjoy MOST of the time!  So for those of you with much to celebrate and those who are still deep in the struggle, perhaps the beauty of my garden can bring a smile; a small moment of the peace and joy I find there.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/04/across-nine-aprils.html  

Much love to all.  celeste

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unicornsnow's picture
Replies 1
Last reply 4/30/2019 - 5:46pm
Replies by: Bubbles

So I finally received my pathology report from the shave biopsy.  Maybe someone on here can translate it for me.  smiley

There is a proliferation of atypical melanocytes in the epidermis and upper epidermis.  The epidermal portion consists of variable nests and solitary cells which are most densely distributed in the basal layer.  In some areas the melanocytes replace the basal keratinocytes.  Some upward migration of individual melanocytes is present.  SOX-10 and Melan-A were reviewed.

Type: Superficial spreading melanoma

Growth Phase: vertical

Clark's Level: IV

Breslow's Depth: at least 0.7mm

Ulceration: not identified

Mitotic rate: 1-2mm/2

Host Response: focally present, non-brisk

Vascular Invasion: not identified

Perineural Involvement: not identified

Regression: not identified

T-Stage: at least T1a

Margins: The lateral margins of the shave specimin are involved.  The deep margin of the shave specimin is focally involved.

NOTE: The melanoma focally extends to the base of the specimen.  Therefore, the depth measurement and histopathological staging as measured here may not represent the deepest portion of the melanoma.

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Lucygoose's picture
Replies 7
Last reply 5/1/2019 - 9:38pm

Hi.  I am Negative for the BRAF mutation, but  have the NRAS and TP53 mutations.  Googling this has not given me any warm and fuzzies.  Does someone have information on these, separately or together, for melanoma? 

 

Thank you 

Lucy

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Summer S.'s picture
Replies 2
Last reply 5/2/2019 - 5:15am
Replies by: Summer S., Richard_K

Hello everybody, 

I first want to thank you for all your support, it kept me sane for the past year, until we finally scored our very first success last month! Yeaay :) 

My mom is 72 years old, she was diagnosed a year ago with stage IV melanoma, skin and lymphnodes. Her genetic tests showed BRAF+ and NO PD-L1 expression. However, we started treatment with "Opdivo" for 6 months hoping for the best, but with no success. So we switched to "Zelboraf" which showed regression of all tumors. 

The reason we used "Zelboraf" only was the inavailability of "combo drugs" at that time. However, now after tons of paperwork, we finally could get Tafinlar+Mekinist available. 

My question is:
"Given that "Z" is going well now , and with manageable side effects (finally). What should we do?"

1. Should we switch to the new combo "Tafinlar+Mekinist" hoping for better results, and yet taking the risk of losing track with "Z"? 

2. Should we add "Keytruda" right away to the targeted therapy we choose for better results? Or should we wait until we run our course with it? i.e. progression?

3. Is there is anything we should do? I am already trying to find suitable clinical trials

I am just worried because we are nationals and residents of an African Country where melanoma is minimal and threfeore its treatments are not registered with local MOH, so they take months to get and I want to be one step ahead. 

Thank you fo reading so far, looking forward to know your insights :)

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anniemaxx's picture
Replies 8
Last reply 4/28/2019 - 10:01pm

It has been a roller coaster of an emotion filled month.  Surgeon did the SLNB on the 18th and the results came in yesterday.  Two nodes negative for cancer.  No residual cancer at primary site.  Not sure of the words but I feel very relieved. 

First pre-op on Monday and I assume there will be a plan.  I have been to some very dark places over this past month and this board has saved my sanity.Thanks to all who post. 

I know this is the first "win" but I am going to be vigilant from now on. 

Thank you sweet friends.

Annie 

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GeoTony's picture
Replies 6
Last reply 4/29/2019 - 12:09pm

Hi Guys

So, my long-awaited POG results have arrived, the dna has revealed no obvious hereditary diseases and even better, a healthy PDL-1, so I should respond well to immunotherapy.

The two tumor genes that show "amplification" are Nras and CCND1. so the plan moving forward is to start  work on the CCND1 with an existing breast cancer drug, Palbociclib (Ibrance), as a targeted therapy to block the CDK4/6 pathway and keep the potential of a MEK inhibitor in my back pocket for the Nras gene "amplification". That order has been decided for me as MEK inhibitors are reserved for BRAF patients here in British Columbia and I'm BRAF wild, although my onc hinted that they could be flexible if push comes to shove.

My question to you all is has anybody had success on Palbociclib, I believe this worked for Cindy's mum. I'm also interested to hear if anyone has been on a trial to combine MEK and CDK4/6, I've heard good and bad stories of earlier trials looking into this combination. Also, a high percentage of current trials are duel treatment options, maybe that’s the way to go.

CT scan and the usual raft of baseline stuff first, so should be receiving the first dose in 4/6 weeks, it’s a pill, no more infusions, got to concentrate on the positive.
The trial is # NCT03297606 called CAPTUR

keep on fighting

Tony

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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chrispl1974's picture
Replies 8
Last reply 5/3/2019 - 10:42pm
Replies by: Serenity, Anonymous, anniemaxx, ourvan, Linny, chrispl1974, bethy62

Hi ,

quick question, I had my SLNB and WLE ( Primary was on my right thigh) about 2 months ago. I am very active and now I have noticed that my  lower leg is slightly swollen. I notice ,when comparing both calf muscles etc.

I also have a small seroma where the SLNB was done. 

My question, is there something I need to do or will this solve itself. During the SLNB 2 nodes were extracted.

Currently it is not bothering me, but I want to make sure.

Thanks for some info.

Chris


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Gene_S's picture
Replies 1
Last reply 4/28/2019 - 11:39am
Replies by: Summer S.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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bethy62's picture
Replies 6
Last reply 4/28/2019 - 10:45am

Wondering has anyone had a rash with Opdivo alone. I will be getting my third 480mg dose next week and this week I developed a very sporadic rash. One area on my chest and the other on my external labia. It starts as a blister, then the blister grows and opens. The skin under the blister is very tender. Ironically it reminds me of a blistering sunburn. I am using hydrocortisone cream and an antihistamine. I am hoping this won't interfere with continued infusions.

A positive but practical outlook will carry you through whatever you have to do.

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Good morning,

I was reading NCCN updates/medical articles this morning. Microneedle technology was mentioned at the 2019 World Congress on Advanced Treatments and Technologies in Skin Care (in Vienna). Since I'm terrible with links from medical journals, here's the article:

Skin Cancer 2019: Can Microneedle Technology Improve Skin Cancer Treatment?

By: Cordi Craig
Posted: Friday, April 12, 2019

Preliminary results presented at the 2019 World Congress on Advanced Treatments and Technologies in Skin Cancer (Skin Cancer 2019) in Vienna showed that dissolving microneedles may provide a noninvasive method for treating skin cancer through the delivery of localized immunotherapy (Poster Board 9). Although the standard treatment for melanoma is surgical incision, it can be associated with serious side effects in terms of patients’ appearance and quality of life. The study findings indicated that the eradication of cancer with positive cosmetic outcomes may be achieved through localized, targeted treatment technologies.

“Delivery, at the tumor site, of therapeutic amounts of cytokines that can trigger natural killer cells may be achieved using microneedle technologies,” Eriketi Loizidou, PhD, MRSC, and colleagues of Middlesex University London, United Kingdom, stated.

The researchers prepared rapidly dissolving microneedle devices, consisting of a carbohydrate formulation, for the direct, localized delivery of cytokines. Each device contained 1 μm of tumor necrosis factor–alpha (TNF-a). They then measured skin diffusion using Franz cells and porcine skin compared with a control device, or a disk without needles made up of the same sugar–TNF-a composition as the microneedle array.

Compared with the control device, initial data suggested that small doses of TNF-a may be integrated using microneedles. The authors observed enhanced distribution of TNF-a in the skin with the microneedle device compared with the control. Eventually, the authors noted, this technology may be developed into self-administered patches, thereby improving patient compliance and economic burden.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/26/2019 - 3:32pm

So the story is im not exactly sure if i do or do not have subungual melanoma.... but im not going to rule it out that it isn't. i have not been diagnosed but iwas wondering if ya'll could help a fella out.... last week i noticed a small black line had appeared underneath my left hand thumbnail. I did some research on it and read about melanoma. When any of you found your melanoma when it started out was it a thin line just 2mm away from your fingernail? or was it a semi-thick line going all the way down the fingernail from top to bottom. Please someone give me some incite..... im really hoping its not subungual melanoma im only 22 years old.....

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TexMelanomex's picture
Replies 1
Last reply 4/25/2019 - 11:44am
Replies by: tedtell1

Hello Warriors!

I missed the check in at round 26 but all is well! I started a crossfit regimen and find that it doesn't suck any more whether I work out or just lick my wounds, I should have started this months ago. The Pembro is still tolerated very well and I have been very fortunate with side effects. I hope and pray this finds you all fighting hard and taking the fight to the enemy without relent!

Tex

Tex

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STL Mike's picture
Replies 3
Last reply 4/25/2019 - 6:41pm

Had scheduled CT, labs and doc visit today.  Everything looking ok. So I am about 18 months NED now. Just short of 4 years of initial diagnosis.

So a quck update on my plans. Next CT, lab and doc visit are at end of August.  Which means I am off on a solo motorcycle trip on the Monday following the 4th of July.  Traded in my 04 Yamaha Vstar 1100 on an 06 Harley Heritage Soft Tail ( 1453cc ) last month. Been checking out my camping gear to see what can still be used.

The route is St Louis MO ( my home ) to Mt Rushmore, then thru Yellowstone to see Old Faithful, over to Salt Lake City, down to the north rim of the Grand Canyon, over to Carlsbad New Mexico for the caverns then to San Antonio TX to check out the Alamo. Roughly 4800 miles give or take. ( depends on how many back roads I take vs interstates ) No time schedule.  Guessing about 3 weeks.  Or I may just run it the other way starting in TX.  Might be cooler temp wise at start of trip than a couple weeks later.

Dum nos vivere, et nostrum vivere

Hang tough folks

 

Mike

Dum vivimus, vivamus

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