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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sing123's picture
Replies 5
Last reply 4/6/2019 - 7:51pm

Dearest ones,

Yesterday marks my one year anniversary since diagnosis. A day before that when I went for my dermotology check the physician's assistant told me that I would either get results that would give me great relief or be very, very bad. 

Heart in mouth, I got THAT news. 

And yet, a year of gratitude.  As a Stage IIIC diagnosed in April 2018, I was eligible for the Opdivo that had just been made newly available to Stage IIIs I think in December 2017? I had a recurrence and had it removed. I had some side effects and they were manageable. I was able to work which felt like normalcy.

I had solid, solid support. From work, from loved ones, from you all. 

And in the year I found out I had melanoma, I reconnected with my love to be, whom I'd met a million years ago (well, 20). Melanoma terrified me, but it didn't scare him. And now we are planning a wedding. 

I am still skittish. I still hug my children too tight. I am still waiting for the other shoe to drop, especially with my next PET scan date and results approaching.  

But as Oscar Wilde said, "We are all in the gutter. Some of us are looking at the stars." I am still looking up at those stars, full of awe and wonder at this life. 

 

 

 

 

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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Shannon39's picture
Replies 2
Last reply 4/5/2019 - 7:16pm
Replies by: Edwin, KellyH

Hello,
I have been on dabrafenib and trametinib for 5 months now and have been taken off due to side effects. My liver enzymes are way too high that I have been off the drug more than I have taken it over the last 5 months. Dose has been lowest possible and my liver was still quite unhappy. My oncologist is now going to try me on Opdivo. Has this happened to anyone else? I have read a lot on here about Opdivo and am quite worried about some of the side effects such as thyroid problems, diabetes and colitis. Right now I am 3A and am taking these meds to help prevent a recurrence. Wondering if watch and wait might be an option. Just weighing my options. Suggestions, thoughts?
Thanks,
Shannon

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/10/2019 - 12:30pm

Hello all,

Firstly, sending healing hugs to you all battling MM.

I am a newbie, and cannot seem to find the answers and feel very alone.  

I have this playing on my mind, my report stated I had regression, I asked the question to my skin nurse (I don’t have a dermatologist) my path report showed 0.06 and I asked if it was good or bad?  The response I got was this

‘uncertain, but most think probably good overall.  It was virtually the same thickness as the melanoma anyway in this case’

Well I have it in my head that regression indicates a poorer prognosis, does anyone have knowledge of regression and does it mean likelihood of a reoccurence?.

i am sorry to post a trivial question, I just cannot find the answer...

love from a big worrier

 

mandy

MLD

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zimmy's picture
Replies 24
Last reply 5/13/2019 - 11:14pm

This is my first time posting. My husband was diagnosed with melanoma in July 2015. He had wide margin excession with a clear SNL. Last year he had a lump appear under left armpit  and it was melanoma. He had 19 lymphnodes removed and began immunotherapy.. but it did not work. He has a wonderful Melanoma specialist!  He is BRAF positive and has begun BRAFTOVI/MEKTOVI  this past February. He did great with no side effects the first month and a half, but has begun to have abdominal pain which she said  is one of the common side effects of this drug. She had him get off of the pills for 4 days, and then dosed him down 2 weeks ago to see if this would relieve some of the abdominal pain. She told us to try Ibuprophen and also gave him pain medicine to try. Of course we would rather not have to rely on either of these due to the obvious.  I realize this version of targeted therapy is new..coming out summer of 2018? Just wondering if anyone has experienced abdominal pain while on targeted therapy, and if so what did you do to help? I really appreciate any advice!  

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SarahW's picture
Replies 4
Last reply 4/6/2019 - 1:47pm

Hi All,

It's been awhile since I've been here. My husband Mac passed away in September 2016 from melanoma.

Meanwhile yesterday my bio-mom who lives in the Annapolis Maryland area sent me a photo of a bleeding scabbing lesion on her leg that she did not show her dermatologist during her last visit. She guesses it has been there over 2 months in it's current bleeding scab state. 

That is exactly how Mac's first melanoma presented. I advised her to get back to derm within 1 week to have the lesion removed and sent for pathology. 

I don't live in Maryland anymore so I am not up to speed on the best melanoma specialists in the DC/Baltimore/Annapolis area. Mac went to the Washington Cancer Institute at the Washington Hospital Center in 1998 and Moffitt here in Florida  in 2012 when his melanoma metastasized.

I appreciate any recommendations so I will be at the ready when her pathology report comes back.

 

Thanks so much!

Sarah

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TexMelanomex's picture
Replies 5
Last reply 4/7/2019 - 10:17pm

Anyone heard from Mike?? I've sent him a few emails but the dude is off the grid. Big Mike....give us an update man!!

Tex

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Happygal's picture
Replies 4
Last reply 4/5/2019 - 9:23am

It is now 4/4/14. I made it through 3 of the 4 Yervoy/Opdivo infusions. (mainly just fatigue and fevers for a few days after each infusoin)  Liver shot way up, I was very sick with chills and fever for 6 days.  Did the bloodwork for the next infusion and the Dr took me off of all immunotherapy and started me on Prednisone.  I am now in the 2nd week of that, liver numbers are going down, (Thank God) and I have more energy than I have had in 6 months...
I go in for the next CT scan on 4/8/19.  Feeling anxious, hopeful, scared, wondering why I am not feeling sick with all of this crap floating around inside of me.

And the elephant.... what's the next step...
more to come,

Tyais

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Sonja1972's picture
Replies 2
Last reply 4/6/2019 - 3:10pm
Replies by: Sonja1972, Bubbles

I have melanoma IV, I'm healthy with Keytrudo. I received the 4th doses of Keytrude so far (at 3 weeks). Today, the blood picture showed inflammation, so that oncologist stopped the dose 5. and prescribed antibiotics for 14 days. Is this normal or should I worry?
 

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This article is more data 185 patients ( different patients) separate from keynote 006 trial which showed 4 year data on 106 pembro patients who stopped treatment at 2 years, had 86% of patients not progress. This new group showed 78% durable responses, so lower than keynote trial but the data that gives me pause is the 32% response rate or 6 out of 19, for those who tried Pd-1 drug a second time!!! https://academic.oup.com/annonc/advance-article-abstract/doi/10.1093/ann...

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/10/2019 - 4:20pm
Replies by: Anonymous, doragsda

Does anyone have Hairy Cell Leukemia & Stave IV melanoma?  Just diagnosed with both and doctor does not know how immunotherapy with ipi/nivo (Opdivo & Yervoy) will affect/work with Hairy Cell.

 

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stevek1959x's picture
Replies 5
Last reply 4/4/2019 - 10:50am

So just finished my last  Nivo treatment today (24 of 24 every two weeks).  Other then a rash, I've been cruising through these treatments with no problems other than fatigue a day or two after the treatment.  The last treatment my creatinine level number jumped to 1.88 and yesterday it was 1.83.  The onco gave the green light to proceed with this final treatment.  As an fyi, this is a adjuvant treatment for stage 3C.  As my creatinine increased my hemoglobin count decreased and today I'm at 11.7.  The onco will recheck levels in a week but I don't see a quick fix to this kidney issue since the half life of Nivo is 26 days and 12 weeks to actually clear it out of your system.  Anyone have any kidney issues with Nivo?  I know steroids can be used but no one on my team seems overly concerned at this point - me not so much!

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TexMelanomex's picture
Replies 31
Last reply 4/6/2019 - 11:17am

Hey Warriors,

Just a quick update. All scans were clear on Monday and this marks one year NED!! I dutifully completed my 25th...or maybe 26th... round of Pembro and look forward to completing the trreatment regimen later this year.

What a wild ride that past two+ years have been..Stage II, surgery, Stage 4, clinical trials with PV-10 + Pembro, more surgery, more Pembro...I know many of you can relate and continue to relate as you wage war.

I wish this relief for each and every one of you. Although I will never turn my back on the possiblity of the enemy returning, it doesnt consume my thought process like it did in the beginning...life is becoming, dare I say, "normal" as it relates to medical concerns. However, my life is definitely not "normal" as it was before Melanoma. I take some time every day to appreciate the fact that I am still here. I plan things that I put off in the past. I still subscribe to the idea that living life is some of the best medicine against this bastard of a disease. I continue to pray for all of you, that in your battles you grow stronger, live better, and are happier.

Warrior On!!

Tex

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MMH's picture
Replies 4
Last reply 4/3/2019 - 12:37pm
Replies by: BillB, MMH, MarkR

I am currently a Stage 1, diagnosed in July 2018 with a .6mm spitzoid melanoma on my upper right arm.  I have been having neck issues and had a thyroid ultrasound last week that showed a 1.1cm nodule.  The ultrasound report said low suspicion pattern and my doctor has said no further action.  Of course, I am thinking, how do you know this from an ultrasound, and should I have a biposy to ensure not melanoma?  Any thoughts would be much appreciated.

MMH

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tedtell1's picture
Replies 5
Last reply 4/5/2019 - 11:37am
Replies by: lkb, tedtell1, sing123, Tset

Dear Friends;

I had a biopsy yesterday to check some new growth on my original scar. Was wondering what the treatment options are if it positive and nothing else shows up on scans? Wait and see? Or just a WLE and leave it? I have already gone through Opdivo and developed colitis. Interested in anyones thoughts if they have been through this.

Keep on keepin on,

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

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