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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Johnjk04's picture
Replies 6
Last reply 1/3/2019 - 6:33am

Happy New Year's to all!!!!! Just wanted to share my story with all of you. In 2008 I was diagnosed with a 4.1 mm melanoma lesion. Everything held together until 2012, then the zhit hit the fan. My melanoma spread to my brain, both lungs, kidney, gall bladder, liver and left adrenal gland. The only item that pleased me was a $100K life insurance policy offered at my employment without a medical exam. At this point in my life I accepted the fact that my time on earth was becoming quite limited, At this time period stage IV patients had an 11% chance of making two years. Then hot jeeper's crow, Dr Allison and Dr. Honjo brought upon us some marvelous immunotherapy therapies, Yervoy, Opdivo and Keytruda, (we should be seeing them in the news instead of the Kardahians constantly). I was so fortunate to be accepted in the very first clinical trial with the Opdivo and Yervoy therapies. At times I hardly ate for two weeks, hardly slept for a couple of weeks and just kept realizing my time was coming to an end. In August 2018, I to my surprise, was declared NED. Our group of 53 in the trial, had an 80% survival rate after two years. All of us are so fortunate to be living in the cusp of immunotherapy treatments, never has the oncology world seen such an improvement in patient's lives. So I am going to give all of you - hope. Hope is the only item that can defeat fear. Stay well, stay happy and keep all of the hope in your back pocket.

John J Kissane

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sing123's picture
Replies 5
Last reply 1/5/2019 - 8:16pm

I hadn’t realized how preoccupied I’ve been thinking about all things melanoma and side effects from Opdivo and an uncertain future until I was getting ready for New Year’s. This evening, for some brief moments I was just a (53 year old) silly girl searching for a dress in a closet to wear to a party. I was me. I haven’t been me for a while. I quite liked being me again.

I decided right then that I’m not going to let myself get lost in being sick anymore. Being me is what keeps me in the present.  And not thinking about anything else but what I am doing in the moment is joyful. 

I hope all of us are able to have many, many of these moments in the coming year.  

Happy New Year everyone! 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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MelanomaMike's picture
Replies 11
Last reply 1/3/2019 - 5:30pm

Hay family, quick note to say Happy New Years to you, im positive you all & I will make it to 12am! Damn! 2019..
As you know i made it through my surgery (lung) back on the 17th and just did Opdivo #10 today so, smooth sailing for the time being, that i can see in my future, and thank you all for my "Atta Boys"! Means alot...as i get more clear headed youll see more of me & excuse my MIA lately...love ya..

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/4/2019 - 6:09pm

Anyone have a pink bump on scalp turn out OK?

I had what I thought was a pimple on my scalp a few months ago (4? 6? 8? I can't remember)... I know that I tried picking it a few times and it would scab over... Stupidly, I never worried (I have had occasional scalp pimples over the years)...

2 weeks ago I find myself rubbing the area and noticing it hasnt gone away. I took a pic, and actually its a very pink  (4mm?), raised, like a small bump, hair growing through (not that the hair makes a difference).

Trying not to panic, but I am. Derm isnt available for 3 weeks... 

Anyone have theres turn out to be nothing?

What could it be? Dr Google has eliminated some of the more common things like pillar cysts (because of hair growing etc)... Ugh.... 

Any advice appreciated... TIA

 

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Coragirl's picture
Replies 2
Last reply 12/31/2018 - 11:35pm
Replies by: Coragirl, Johnjk04

Hello all, I hope everyone has been enjoying the holiday season. I have a question  about a possible side effect from Opdivo. My husband had his 8th infusion this morning and forgot to ask his oncologist,so I thought maybe one of you could help. My husband has tiny splits in the skin on his hands. He has also had a rash on his legs, I have heard about rashes but not splitting skin. The splits are just like paper cuts.so strange. I wish you all a happy New year, I hope 2019 brings health and happiness to all.

Amie Taylor

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lkb's picture
Replies 8
Last reply 1/1/2019 - 2:16am

I've heard of patients' hair turning white on nivo. After four months of treatment, my hair is still dark brown, but my eyelashes are now white. Has anyone else had this experience or read about how/whether it relates to efficacy?

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met.

 

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kst's picture
Replies 1
Last reply 12/31/2018 - 2:23pm
Replies by: sing123

For those that developed arthritis from checkpoint inhibitors that will not allow a steroid taper.  I noticed this new policy approval while scrolling BCBS websites.

My docs at MDA felt it was less likely to counter the Nivolumab than Infliximab or Humara would.  I had to fight BCBS-Texas a little to get approval.

https://www.bcbst.com/UpcomingMPs/Topics_01-31-19/Tocilizumab_pol.pdf

 

Susanne


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Mitchell's picture
Replies 5
Last reply 12/30/2018 - 8:46pm
Replies by: Mitchell, lkb, ed williams

July of this year my oncologist put me on a opdivo. Ever since that point my world has come Crashing Down around me. I have I'm going to metastasized tumor in my groin and within two infusions it grew from a tumor the size of a teacup to a tumor the size of a large dinner plate. My question is has anyone experienced the same problem with a Apdivo having reverse results?

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aldrichdesigner's picture
Replies 17
Last reply 1/13/2019 - 8:29am

I'm sorry if this is a bit morbid and might be hard for some to read or hear. So, if you are offended by my question or the answers that may follow, please forgive us now as we mean no disrespect.

That being said, I would like to know what it's like at the end of this war? How do you know when it's that time and there is nothing left? Does Melanoma just end up taking us or is always going to be organ failure of some kind?

Again, I mean no offense if this is hard to talk about. I just have had this on my mind a lot lately and need to know what to expect. I need/want to know how to know it's getting close.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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sing123's picture
Replies 8
Last reply 12/30/2018 - 1:12pm

Hi all and a very happy pre - New Years to each of you. 

Does anyone know if I can safely take these two together? Nutritionist really wants me on the curcumin. I will ask my oncologist at my next appointment but I wanted to know if anyone knows earlier than that.

Thanks! 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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sing123's picture
Replies 0

How are you feeling? 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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Happy_girl's picture
Replies 4
Last reply 12/29/2018 - 9:22am

Just thought I would share! I shared on some melanoma Facebook pages if you are on them.  We just welcomed our 2nd little girl into the world on Dec. 26. This is our first baby after being diagnosed stage 3a almost 5 years ago! We are so happy! 

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Ryan2240x's picture
Replies 14
Last reply 1/3/2019 - 3:16pm
Replies by: AN8, Ryan2240x, Janner, Melvin, betsyl

I was diagnosed 12/3 with melanoma, then had a full body check and a melanoma in Situ was found. My first was stage 1. I have had both WLE’s and the margins were clear. 0 mitotic rate and no ulceration on both.

 

The thing is I already had major ocd/anxiety issues before this and I am having a very difficult time coping with everything that happened. 

 

Im going to a new derm Wednesday because I can’t stop thinking about other moles that I have. I’m wondering, “How long was this there?”, etc. 

I’m guessing they would have noticed anything concerning during the skin check I had at the beginning of the month? 

i think some of my moles have appeared as I have gotten older(I am 35).

Even used a skin check app and it said this other mole might be atypical and I started freaking out. Then again, I used a picture of my melanoma to test it and it called that dermatafibroma. Probably didn’t spell that right. 

I guess I’m just on here looking for support so I stop freaking out. My family doesn’t want to hear about it and I just wanna get some rest at some point and stop my mind from going crazy.

Ryan 

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Summer S.'s picture
Replies 4
Last reply 1/7/2019 - 5:23pm
Replies by: Richard_K, Kellie-T, Summer S., Anonymous

Hi,

My mom, stage IV, just started with Zelboraf 13 days ago,

for the first week she took 2 tabs every 12 hours and she was feeling just fine.

So her doctor increased the dose to 3 tabs every 12 hours and she did not feel so well

- Significantly decreased appetite

- Rash and itching all over her body

- Tirdeness and Sleepliness all day

- muscle and feet pain

- Cold like symptoms

 

has any one had experience managing such side effects or soothing it a bit?

Do you think this can be temporary?

has as anyone had experience with Z on reduced dose 2 tabs every 12 hours?

P.S. unfortunately we cannot add Cotelic at the moment

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Maureen038's picture
Replies 16
Last reply 12/31/2018 - 2:22pm

My husband, Bill had great scan news this morning!!! His new drug regime is working!! We’re going on seven years this March!!!

Love to all of you!!!

Maureen

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