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.

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Hi Everyone,

As many of you know, my Mom was diagnosed with Stage IV melanoma in  November of 2013.  And 2 years ago today we found out that the radiologist completely missed 3 brain mets.  Even with this and everything that's happen she has had a terrific outlook due to how quickly she responded to the treatments AND all the terrific doctors at USC in Los Angeles.  

We were there again yesterday and after her 4th infusion of Keytruda and the new CT scans and MRI of her brain we are thrilled that things are stable or still shrinking AND there is nothing new.  



She was misdiagnosed for almost a month after getting the news that she was Stage IV. After seeing 3 melanoma specialists she was also diagnosed with brain mets too. She had gamma knife radiation for 8 or 9 tumors (1 was missed) December 9, 2013 and started Yervoy 4 days later.  

Her body "loved" Yervoy as far as the cancer went, but she got colitis pretty bad and only had 3 infusions. She did end up having 17 more brain mets found in April of 2014 and we switched the treating neuro-oncologist and radiation oncologist who had been treating her. (They were sub-par as far as I am concerned and we were lucky my Mom did not have any permanent or detrimental problems due to thier treatment or advice.)  

My Mom had just over a year of very good scans and ended up with a reoccurrence and needed a craniotomy in June of this year and another round of gamma knife radiation for 1 new brain met in August.  

She started Keytruda in late August of this year and the tumors in her trunk are still getting smaller or are stable. All about the size now of a grain of rice.  We are hoping that the Keytruda can boost her immune system enough so that she does not have any further issues with brain mets.


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casagrayson's picture
Replies 2
Last reply 11/25/2015 - 11:49pm
Replies by: kylez, casagrayson

Has anyone ever had a metastasized melanoma that presented in the nasal passages?  And are all melanomas in the nasal passages considered mucosal, or are some cutaneous?  

My husband still has his persistent cough.  Doctors ruled out reflux with an esophageal and stomach biopsies; chest CT showed one small nodule in each lung but radiologist was unconcerned.  Next stop was the ENT, who found what he said was a polyp (actually I heard him quietly say to his assistant "bleeding polyp", right side only) and he has scheduled a CT scan of the sinuses.  Everything I've read (medical journals) say that single-sided polyps and bleeding are concerning for malignancy.  So ... what are the chances this is a spread from the melanoma?

Strength and Courage,


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Millykamp's picture
Replies 1
Last reply 11/25/2015 - 10:57pm
Replies by: tschmith

I just wanted to wish those who celebrate Thanksgiving an very Happy Thanksgiving!!!!


For ose in other country I hope this find your day well and full of happiness and joy!!!!!


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Replies by: kylez, AshleyS

I got my first infusion 2 Friday's ago and started having a small fever (99) this past weekend. I now have a rash over my entire body that itches like crazy. I am able to curb the itching with Sarna and Benadryl spray. I was also having some mild diarrhea that I am able to control fairly well with Imodium.  Seems as though within 5-10 minutes after whatever I eat I get a cramping stomach. I'm curious if people that have had side effects if they were similar and how long did it last?

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Toby0987's picture
Replies 7
Last reply 11/25/2015 - 7:22pm

Hi-I was diagnosed feb of 2013 with stage 3b melanoma at mayo-primary site was under side of right arm that spread into my right axilla-1 node macro. I turned down interferon and radiation. They did a wide excision and also took out 48 armpit lymph nodes/just one fat one was positive. Well since then I've had unrelated pap thyroid cancer (ablated and dead) and now I have a pea sized hard lump a couple of inches from my forearm site. It has been there for a month and doesn't seem to change. Forgot my mitotic rate was 4 from melanoma. So should I get the hard pea cut out just under my skin (no color and it formed under the skin) or should I leave it for my pet scan/ultrasound in March? What do you think?

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One more way Opdivo has been approved for use in melanoma as first line for V600 wild type, nonresectable or metastatic melanoma....announced today:

Great love and appreciation to the ratties!!!  All my best to all of you.  Celeste

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jsagraves's picture
Replies 7
Last reply 11/25/2015 - 8:06am

I'm not really sure if I'm stage 3a, 3b or 3c.  Based on the results I received today, I would assume 3a.

So I went through full node removal in my neck and underarm on my right side.  The surgery took place Friday, November 13 and I received biopsy results today.  They removed a total of 59 nodes from those areas and every one came back negative for cancer, which I'm very thankful for.

I'm very numb from the top of my ear down to the top part of my rib cage and trying to gain strength and range of motion back in my arm and turning my head.  Other than the numbness and drainage (I have a drain tube), no significant side effects from the surgery.  I'm assuming the numbness will dissipate over the months ahead.

We are still trying to determine whether or not to pursue further treatment, although I think I've ruled out interferon.  I may try to find a clinical or observe from here on out.  We'll see.  Anyway very thankful for the good news today and while it could be said that the node removal was unnecessary (in hindsight), you just make the best decision possible with the information you have and don't look back.

Any thoughts on clinicals versus observation is appreciated.  I'd like to focus on treatments that build my body and immune system, not break it down further.

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BethA in VA's picture
Replies 1
Last reply 11/24/2015 - 9:57pm
Replies by: Anonymous

Help.  My first post was blocked as spam.  I'm not spamming anyone.  This is real.  Diagnosed in 1992.  Then again in 2004.  Use to be here alot.  Now 11 years later, have lesion on stomach about size of quarter.  It was water filled, now has scab and fibers in the center that are yellow and look like material.  I pulled them out with tweezers.  There was no end to it. 

Does anyone else have experience with a fiber area in a tumor? 

Melanoma tends to cut into your looks!!


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Anonymous's picture
Replies 2
Last reply 11/24/2015 - 8:38pm

I have failed Keytruda and the docs are now offering me Ipi/Nivo combo.

I am a little bit scared to do this combo as i had pretty bad GI issues with Keytruda.

Has anyone had success with the combo after failing Keytruda?

I am not sure if i have any other options anyway!




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Anonymous's picture
Replies 0

We haven't heard from Ginger888 for a long time. I hope she is doing well.

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Ginger8888's picture
Replies 9
Last reply 11/24/2015 - 5:09pm

I did my last treatment of Yervoy Aug 13th 2014 and so far all scans have been NED..Today i got my new scans and am stll NED..Whoot!!!

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Sce1's picture
Replies 10
Last reply 11/24/2015 - 11:49am

My 6 year old son has a mole on his back that has changed in the last two months. He has Ben Sen by a dermatologist in the UK. The dermatologist was not a paediatric specialist. At the start of the appointment she told us that she thought it was fine and she would make an appointment for 12 months. Then changed her mind and he is now seeing a paediatric dermatologist in 3 months. I'm really worried. The mole is small but has a light pink area spreading around it. I'm not sure if I should get a second opinion or wait for the appointment in three months? Your thoughts would be very much appreciated. 



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Anonymous's picture
Replies 19
Last reply 11/24/2015 - 11:37am

Let's get some positive stories for the newly diagnosed.

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Anonymous's picture
Replies 2
Last reply 11/22/2015 - 6:13pm

This is my first scan since diagnosed with micromets in one node. What can I expect? I've heard people say my pet light up like a Christmas tree. Does that mean I can see the screen during the test.

After the test do they just tell you your done and you can go or do they explain anything they find or see?

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