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
Replies 20
Last reply 11/30/2015 - 10:55am

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

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Anonymous's picture
Replies 2
Last reply 11/30/2015 - 8:36am

Hello!    I have noticed a patch near my collar bone; lymph node location, that is slightly raised and discoloured.    When I run my hand over it it is swollen to some degree.     I am a stage 3 melanoma patient and had completed a year of Interferon July 2013.    Is this anything I should be concerned about or simply wait another 3-4 weeks and see if it disappears?  I don't like worrying about these things but admit to feeling a little worried when certain things present.   Thank you for your help.    Take care.


Stage 3a

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Anonymous's picture
Replies 4
Last reply 11/29/2015 - 10:32pm
Replies by: CHD, Anonymous, Janner

Can somebody please explain to me ulceration. I mean if it has spread to your lymph nodes why is it worse or even significant. Are the cells more aggressive? Are the tumors always worse? I know it carries a worse prognosis but why? Been looking on the internet and cant find out the reason. The only thing I found was a study that said ulcerated melanomas tend to have a higher mitotic rate.  Anyone know?

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gregor913's picture
Replies 6
Last reply 11/28/2015 - 7:43pm

Hi I'm currently 3b stage. I was just wondering how clinical trials work. I have hmo insurance.

1. Do you have to go to the hospital where the trial is at etc travel.

2. Who pays for the trial. Is there any cost for us.

3. Does my insurance have anything to do with the trial.

4. Does anyone know of any adjuvant trial options I can enter. I'm in the Chicago area.

5. Excluding clinical trial. If I take a drug like ipi since it's approved now. Will the drug be covered in the future if I need to take it again.

Thanks Greg

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Scooby123's picture
Replies 3
Last reply 11/28/2015 - 11:10am
Replies by: geriakt, Scooby123, Gene_S

Hi everyone, i completed ippi end of july had a scan straight away to see if it was working. it had reduced my cancer by 50%. i have had another set of scans but still awaiting results after 2 weeks. i go next week to get them. i have been in a lot of pain on my left side round my ribs and lower back left side. some days it is worse than others.  am wanting to know if it still could be ippi working or tumours growing. my tumour in one of my lungs went down to 0.8mm could it grow and cause pain in a short period of time or could it be treatment still working. i know people who have been on ippi not showed responding till later on finishing it. i know i got results from it straight away but can it stop working so quick. Any experience with this treatment and after completing it would be much appriciated. I have lung liver who knows eleswhere involment.



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Scooby123's picture
Replies 2
Last reply 11/28/2015 - 2:36am

Hi all,

I contact my nurse due to been in pain a lot round my ribs and side area. Not like the pain I get from my arthuritus which I have in my back and neck. I had scans done two weeks ago results next week. But she spoke to my consultant and called me today with scans stable still so not sure why in pain they are checking me next week. So was so pleased all stable with scans so next week when go least I will not have that sickening anxious feeling waiting for results of scans.

thanks for all your support 


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Replies by: gregor913, Ed Williams, Bearsworth, Anonymous, 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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Debbieamccoy's picture
Replies 9
Last reply 11/27/2015 - 3:29pm

 So I stayed out of the ER a whole 24 hours and came back for vomiting. The ER dr walks in after all testing and announces I am very sick I am septic with a Wbc of  12 . 4 a febrile stable vitals. I have pnuemoniaMy liver enzymes are out of wack . Duh I have liver mets. Then he tells me I have wide spread mets to the lung ( I don't remember any biopsys!)then he asks have you and your family discussed hospice . I'm so mad scared and confused at this point. I'm getting transferred to Washington u where my oncologist is and he's out of town until day after tomorrow . Wish me luck . If it is melanoma I hope I can continue Ipi/nivio 

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jsagraves's picture
Replies 8
Last reply 11/26/2015 - 12:38pm

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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Bubbles's picture
Replies 1
Last reply 11/26/2015 - 10:00am
Replies by: jamieth29

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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Millykamp's picture
Replies 2
Last reply 11/26/2015 - 9:55am
Replies by: jamieth29, 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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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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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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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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