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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Anonymous's picture
Anonymous
Replies 3
Last reply 1/13/2019 - 11:30am
Replies by: Janner, Tset

Hello... I had a WLE for a thin melanoma over 2 years ago.    About a year ago I found a raised pimple’y thing at the bottom of the scar.  It didn’t concern me too much and it went away.   

Last night I found a flat spot that is larger and darker than most of my freckles in the center of the WLE scar.    It’s irregular  in size and color - mostly darkish red with some brown.  

Today is Sat and my derm can see me Tuesday.   She is two hours away and I am going to miss an important meeting at work but my gut is saying just go.    Any reason to think I should buy some time to watch it for a bit or just go see her? 

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Happygal's picture
Replies 15
Last reply 1/16/2019 - 12:09pm

Hello, I recently finished 1 year of Opdivo. Thought everything was going great. They did a base scan to start for after medication and found multiple spots on my liver and lungs.... Completely surprised me. I had nothing on my last scan in April, had no side effects whatsoever during treatment. They did a biopsy on my liver and found out yesterday that it is melanoma again... Inoperable and incurable. I will be getting an MRI on my brain next week to make sure it isn't there also. I will then be starting the Yervoy/Opdivo regimen.
I am at a loss on how to feel about all of this. I have changed my diet. I am so scared

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jsmith279's picture
Replies 4
Last reply 1/14/2019 - 11:56am
Replies by: Janner, Edwin, jsmith279

We just got home from the 2nd Dr. He has the same thing in mind without it being as invasive and/or exploratory. Harold is having the wide line excision and radio active dye injection on Feb 18th. IF and only IF the dye shows up in any of his lymph nodes in any of his lymph nodes anywhere they will be removed. The wide line excision is being done so there will be clear and clean margins from where the mole was.
SAME exact thing as the other one said, with the exception of 2 weeks off work not 6 - 8.

http://www.wifesjourneywithmelanoma.blogspot.com

 

Jen

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Hi all, I would love to hear others' thoughts on this:

Before my WLE/SNB surgery, I had a full-body check, and the doctor at my dermatology clinic happened to mention that something must have "woken up the melanoma".  At the time, I thought that perhaps being pregnant with my second child was the culprit (the body's immune system is lowered to avoid rejecting the fetus). 

Upon the recommendation of my primary care doctor, I saw a medical geneticist and mentioned "something woke [it] up", and she immediately said that with cancer it's not just one thing that happens, but "a whole bunch of things that have to happen".

I have read "Anticancer" and skimmed similar books -- I should mention I am also a thyroid cancer survivor (had both cancers at the same time unknowingly!), and am a mom in my 30s, so I feel obligated to try to figure out what I did to have this happen (with the melanoma, I have never tanned or sunbathed, and burn so easily that I try to stay out of the sun, so it is a little baffling!).  

My genetic testing results came back with no known genetic cause of either cancer.

Yes, on a bad day I am waiting for the other shoe to fall!

I know it is pointless to be worrying about what caused the cancer to start, I am simply just very curious and would love to have a few more pieces to the puzzle.

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Hi all,

As the anesthesiolgist told me when I was about to have my WLE and SNB, "Melanoma doesn't care" (that [you] have never tanned or sunbathed), still, I am wondering how many other people have this same story.

I am now 37, but a year ago I had two separate, unrelated cancers at the same time -- thyroid cancer and melanoma.  Because my lesion was pink (amelanotic), it was missed initially when I went to see a dermatologist!  It then had 9 months to grow before I noticed it felt more raised and my husband insisted I call.

Anyway, all the details are in my profile, but in short: lesion on my upper left torso (an area normally covered by a shirt), .9 mm, Clark's level III/IV, non-ulcerated, mitotic rate of 2, negative sentinel node biopsy.

As someone who has struggled with my weight my whole life, I have been a very covered up person -- never worn a bikini.  Never tanned or sunbathed.  I am fair-skainned with reddish hair, but not unusually fair or red.  As a child growing up in Baltimore, I definitely had a few bad sunburns, and in my 20s I had a bad sunburn on my back while in Greece -- but in general, I can confidently say I am good about sun protection (I live in Seattle now).

If I can rant a minute longer, I just want to add that when I am feeling low, I sometimes feel like I got a sexy person's disease (bikini/beach/tanning beds), without having the advantage of having the fun.

So how many others are baffled by this diagnosis?  It must be a misconception I had that melanoma only strikes people that tanned and sunbathed.  

 

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Bubbles's picture
Replies 4
Last reply 1/13/2019 - 7:39am

I've been thinking of you and hope you and the Rock Star have melanoma on the run!!!  Love, c

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BrianP's picture
Replies 4
Last reply 1/12/2019 - 2:37pm
Replies by: ed williams, Bubbles, BrianP

Tweet from Dr. Luke about one of their new trials.  In one of the replies from Dr. Luke there are a couple links two studies and locations of places conducting trials with FMT and other microbiome agents.  Promising stuff.

 

https://twitter.com/jasonlukemd/status/1083792399997067265

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Can anyone tell me what to expect for my upcoming re-excision surgery? I had a shave biopsy on October on the back of my knee that took over a month to heal. Now my doctor will be going back to take .5 cm margins because the biopsy from UCSF came back as spitzoid of uncertain potential. I know these margins are small but I had so much trouble healing the shave that I am very nervous about the procedure. The lesion was deep in the crease behind my knee and I have to get up and down off the floor all day with my toddlers so rest is not much of an option after the first day.

 

My thanks to you and all of this forum.

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Calling all Mektovi/Braftovi users. Have anyone experienced weak muscle or tendon side effects from this Targeted Drugs. Shortly after starting on these targeted drugs I experienced a torn Supraspenatus "rotator" tendon tear, in addition to tendonitis of my elbow. I have read that these cancer inhibitors do create muscle weakness and some tendon weakness, mostly Achilis tendons but never any mention about potential rotator cuff tendon issues. My tear probably is related to many years of a poor golf swing but just wanted to see if anyone else has had shoulder tendon issues that possibly could be caused by these drugs. Thanks

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/11/2019 - 8:21pm
Replies by: ed williams, Bubbles

I am currently on these new targeted drugs and they are working in controlling my melanoma. However I have heard that with these drugs and other inhibitors, that when they no longer are effective that switching to an imunotherapy drug may no longer be an option as the cancer will be able to beat the imunotherapy drug. Has anyone seen research articles on this issue?

Donovan 

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WithinMySkin's picture
Replies 6
Last reply 1/12/2019 - 6:53pm

Hello Warriors!

I have an idea and I'd like some feedback. I created something called the Journey Journal (you can see it on my blog) but some copies came back from the printing press with blemishes on the cover so I can't sell them. They are still perfectly good journals so I thought I could send them out to some of you all and start a journal club. We are all ratties in the melanoma world...why not be ratties for something that could be fun, right?

If you're interested, email me at Lauren@withinmyskin.com

Warrior on, my friends!
Lauren

WithinMySkin

www.Withinmyskin.com

 

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nuttydizzyme's picture
Replies 1
Last reply 1/10/2019 - 11:13pm
Replies by: Bubbles

hi,

My mom has a melanoma on her foot and got surgery last year.Doctor also took out her lymph node at her bikini line. After that she has been treated with Opdivo since JAN2018. On oct 2018, she has a CT scan and found that her lymph node is bigger so she got a radio active therapy and the lymph node size are decreased.

OCT 2018, the doctor added Yervoy to the treatment with a combination of optivo.

JAN 2019, the CT scan result indicate that she got one lymph node that seems to get bigger so the doctor change the treatment to be a Keytruda.

Now am so sad and would like to add the CBD oil 10% to her everyday supplement (4drops a time at 3 times a day)

But after trying to search info on this , it seems that it does not recommend together? Do you have any data or information to advice me and help me on this please?

your kind help will be much appreciated.

regards,

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sing123's picture
Replies 3
Last reply 1/14/2019 - 7:22am
Replies by: rosa1, sing123, Toby0987

Has anyone used Mayo in Jacksonville for consults/ and or treatment? I’ve been several times to meet with Dr. Richard Joseph and I have been very happy with the time and attention he has given at the appointments.  Tomorrow I meet with Dr. Stephen Ko, a radiation doc.  Is anyone familiar with him? 

Thanks fellow wonderful strong people :) 

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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MovingOn's picture
Replies 5
Last reply 1/12/2019 - 3:38pm

Hi, just wondering if there is any sensation when someone has a lung met?

I’m currently between scans and an 8mm polygonal nodule was seen on my last scan. I know that nodules show up in the lungs frequently and usually aren’t melanoma. However, I’ve now had a chest cold since 12/24 and I’m waiting for it to finally go away. My next scan will be in early February so I’ll definitely know then if the module went away. 

Thanks

2019 is a new year!

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Thisisnottheend's picture
Replies 8
Last reply 1/12/2019 - 3:04pm

Hi there,

This is my first time posting, although I’ve been reading posts for some time. 

 

Quick background. I have stage 3c nodular melanoma which was diagnosed last summer. I found out last September after WLE that the cancer had spread to one of two lymph nodes under my arm which made me stage 3 instead of stage 2 like they thought before. I was offered interferon as Nivolumab isn’t offered to stage 3 patients in Canada yet. I declined as I was told it wasn’t very effective. I wanted to go for Nivolumab anyway even though we would have to fundraise to pay $180,000 out of pocket. We applied for compassionate funding to Bristol Myers Dquibbs, being told they would maybe pay for half if anything, but thanks to prayers of many people and some pressure from some people in government we know, they gave me the entire treatment for free! So amazing. 

Anyway, I’ve been on treatment since end of October. I’ve been tolerating it well, except that I got hyperthyroidism a month or two back. I was told that was a good thing as it means the medicine could be working? But just today I got a call saying I now have hypothyroidism and my numbers are extremely low. Does this reverse mean the medicine is no longer working? I’m a little worried. I’m extremely glad to be stage 3 and not stage 4, but without tumours to shrink, I don’t really have any other way of knowing if this medicine is working. Any insight?  Thanks so much! 

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