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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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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John Paul's picture
Replies 5
Last reply 4/1/2019 - 9:26pm
Replies by: lkb, John Paul, casagrayson

Hello,

This is my first post on this forum but have been reading occasionally for some time and would like to thank all for the care and support you show.  My guess this is a common question from us newbies who are still getting used to this new world.  I am Stage 3a, 1.8 mm diagnosed early 2018 with a positive LN in my neck after SLN biopsy.  I had additional partial  LN neck surgery that showed NED and was put on close observation with no treatment.  I have had clear scans only showing lung nodules that my Onc felt were benign.  I have my  3 month follow with Onc in a couple of weeks but recently noticed a small eraser / pea size bump deep into the armpit of the side of the diagnosis. It started off quite sore and could be a result of fighting something off.  Question is should I call my Onc to see if I should move the appointment up or continue to see if it goes away?  It’s been just about 10 days since I noticed.  All the thanks and looking forward to some simple advice.  

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Did anyone have an increase in GERD or reflux after surgery or develop a hernia? I had surgery on my back to remove my tumors and my chest has hurt ever since and I've had a lot of reflux since then.

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jen.bren's picture
Replies 6
Last reply 4/2/2019 - 12:23pm

Hi all- I’ve been negative for 14 years of stage 3, and had it twice in total. The last time in 04 I had nodules coming out of my thigh, one out of my knee, and many lymph nodes. I had Cisplatinum, Vinblastein, and Temodor, then all nodules and groin nodes removed via surgery and 2 more rounds of chemo.

Now 14 years later I felt a small nodule in my calf.

I am having a PET scan on April 11th and a removal of the spot on the 18th.

Glad to hear some of you have done well on the newer drugs.

I don’t know much to say but that I am freaking out.

Prayers to you guys and all of us!

I am 44 yrs old now.

 

 

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