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
Carlsbad317's picture
Replies 10
Last reply 5/4/2019 - 1:17pm

Made it to Huntsman and met with Dr. Hu.  She is a new addition to the Huntsman team, but specializes in melanoma and immuno therapy and worked at UCLA.

She was excellent with communication and explained diagnosis to treatment in very common language.  Right from the start she had my attention when she said I was stage 3.  Then my fear of the second opinion started to echo in my head as she stated she disagreeed with the treatment paln.  She felt it was too aggressive due to the sever toxicites such as diarreah, rash, fatigue and stomach issues.  Said that having to take immuno suppressents to contol side effects was not good.  Wants to discontinue combo treatment and only do one.  Stated in her experience it will not lessen fighting the cancer.

The Vegas team, incuding a doctor that is a melanoma speciatist that previously worked at Huntsman, disagreed and stated they have to be as aggressive as they can and it is stage 4.

Huntmans - cut treatment - stage three - and prognosis 3 -5 years

Comprehensive Cancer Center - full throttle with combo, stage 4 - and prgnosis 12 to 18 months

 

Both said it is my choice and one dr will support the other - I do not understand how different they options are.  Ifeel like I am back at square one.  I do not know how to make a decision based on the facts Iam presented with.  

Just Venting.

Hanlon

Login or register to post replies.

tedtell1's picture
Replies 4
Last reply 6/9/2019 - 6:19am

Greetings warriors;

I recently had cat scan on my chest/abdomen to figure out some stomach issues I have been having. They did not find any issues but did see a 4MM nodule in my left lung. I have been NED since last Spring and my last PET in January did not show this nodule. I emailed my onco about this as he did not order the test and would not have seen it, but what is normally done in a situation like this?

Thanks,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

Login or register to post replies.

ashleynb's picture
Replies 2
Last reply 5/6/2019 - 8:07am
Replies by: Bubbles, regwash

I was first diagnosed last March at age 30 with stabe 1b Melanoma on my upper/mid back. Since then I have had 4 other spots removed. 1 of which was Melanoma stage 1b, the others were just severely dysplastic. I still have my 3 month checks with the dermatologist, but at what point would a SLNB be needed? My dermatologist doesnt feel like its necessary since both spots were only stage 1b. When I asked how do you know that there isnt Melanoma anywhere else the response was "you dont. just keep coming for your skin checks every 3 months." Anyone else had experience with multiple stage 1 spots? While I am SO thankful they were caught early, it still causes a lot of anxiety with the unknown!

Ashley

Login or register to post replies.

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!

 

 

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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 :)

Login or register to post replies.

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 

Login or register to post replies.

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

Login or register to post replies.

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


Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Pages