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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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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maryb-z's picture
Replies 5
Last reply 4/25/2019 - 10:20am

Really, anyone who has experience with Opdivo and severe joint pains and swelling. Both my melanoma specialist and local oncologist are adamant that prednisone, even low dose will decrease efficacy of Opdivo. I swear this topic came up on this board before. I bet Celeste has some hard data I can use as leverage. I'm at the half way mark and melanoma specialist wants me to discontinue treatment if I am in so much pain. Ugh!

No One Fights Alone

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Jsneathen21's picture
Replies 5
Last reply 5/18/2019 - 3:40pm

Hello

just wondering if anyone has been through this immunotherapy? I was considering doing this treatment. Was wanting to hear about what others have went through with it 

thanks 

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regwash's picture
Replies 19
Last reply 5/6/2019 - 12:34pm

Hi all, my name is Regina and I’m new to all this. I’m 30, married with 2 daughters ages 6 and 3 months. Just wanted to share my story and ask a question or 2. 

So I had a “weird looking” mole on my right shoulder blade/top of my back for maybe 6 months, maybe longer than that. I’m not sure exactly how long it was there. I gave birth to my second daughter in January and I know I had it WHILE I was pregnant with her, just not sure if it showed up before or during pregnancy. My husband had made comments about it looking odd and I knew it was there, just never felt an urgency to get it checked out. 

Sunday March 24 of this year, we had just finished a 3 week long fast with our church and I felt an overwhelming nagging that I needed to get this mole checked out ASAP. So I told my husband I was going to make an appointment with a dermatologist he had seen. I called the next day, Monday and I had an appointment that Thursday, March 28. 

I told the dermatologist I wanted a full skin check because I have a lot of freckles and moles all over and I had one or two I was concerned about. Showed her one on my chest that looked odd to me and she said it was normal and then told her I was worried about the one on my back and she said, “Yes that mole is worrying to me too.” She did a biopsy and took the whole thing, and told me she would call me with the results on Wednesday. 

She called me with the results on Wednesday April 3 and confirmed that the mole was a melanoma. She told me she was referring me to a surgical oncologist, who would do a wide local excision and decide whether or not to do a sentinel lymph node biopsy. My appointment with the surgical oncologist was supposed to be Tuesday April 9. They called me the day before and said they had to reschedule for the following Tuesday. This made me extremely upset and I asked the question, “isn’t this kind of a time sensitive situation? Shouldn’t we not wait on this kind of thing?” The surgeon’s office assured me she had seen my pathology report and determined it was okay to wait a week for the consultation. I had also called the dermatologist to get her opinion on the matter - she also assured me it was okay to wait a week. 

I had my consultation with the surgical oncologist last Tuesday, April 16. I found out the details of my melanoma - malignant, stage 1b, superficial spreading, 0.92 mm Breslow thickness, Clark’s 2, mitoses less than 1, no ulceration. 

My sentinel lymph node biopsy and wide local excision is scheduled for next Monday, April 29. I think I’m more nervous to find out whether or not this has spread to my lymph nodes than anything else. I’m a little nervous about going under anesthesia. 

if you’ve read this far, thanks for reading my novel. I think my only question so far is, with my thickness of 0.92, is there a high chance it may have spread to my lymph nodes? The surgical oncologist said the biopsy is not normally done for a stage 1, but because the thickness puts me right on the cusp, “better safe than sorry” I guess. 

again, thanks for reading. Looking forward to the support I can receive here. If you feel led to share, please tell me how I can pray for you specifically (besides the obvious, complete healing of this disease). ❤️-R

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