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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JoshF's picture
Replies 10
Last reply 10/24/2015 - 1:38pm
Replies by: Swanee, JoshF, Anonymous, SABKLYN, Bubbles, stars, AnitaLoree

Good Morning!!! I found a tiny lump in my armpit the other day and it didn;t seem deep. I talked with my onc and she suggested going to derm, which I did this morning. He flet it, didn;t seem concerned as it was superficial and did a 6mm punch and dug it out. Of course I'm on edge and sked if it's a node. He said nodes in armpit aren't usually superficial and he felt if it was, he wouldn;t remove it and refer me to surgeon. He wanted to take out due to my history and give peace of mind. Well now waiting game which brings out all kinds of anxiety and thoughts running through my head. Anyone have similiar experience or have anyhing they can add in terms of superficial lumps...cyst, lipoma etc.... I'm grateful that I've been fortunate given my experiences with melanoma, I always know it could be worse but that's the thing with this crap....I tend to expect worst. Life of a cancer patient.....



Let's work for better treatments....for a cure!!!!

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Debbieamccoy's picture
Replies 3
Last reply 10/21/2015 - 4:21pm

How soon can I tell if it's working I've had one dose and my legs are swollen I feel like crap

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BrianP's picture
Replies 3
Last reply 10/21/2015 - 1:25pm

Thought Dr. Joseph did a pretty good job of summarizing options for Stage III and touching on the CLND topic.

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dfeng's picture
Replies 9
Last reply 11/3/2015 - 2:48pm
Replies by: dfeng, _Paul_, Bubbles, Polymath, Scooby123, stars, Anonymous, Jubes, Mat

Have to move to other trials.

The combo doesn't really control the growing of tumors. 

I am waiting for the screen for another trial, it takes two weeks to check whether I am eligiable.



D. Feng

My record of progress on the first ipi/nivo trial is here:

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Christine.P's picture
Replies 8
Last reply 10/21/2015 - 11:57pm

I am stage 4a and will be starting the Opdivo/Yervoy combo in two weeks. I am trying to find information about nutritiion during treatment with these specific drugs. There seems to be quite a bit of nutrition during chemo infomration out there, but we all know these drugs are very different. Does anyone have experience with or resources on, for example, foods to avoid if dealing with certain side effects, good, easy recipes, etc.? 

I know about good nutirtion in general, and know everyone has different side effects and needs, but I am trying to learn as much as possible about my actual drug treatment, side effects, and how to use nutrition to my advantage. I would especialy love smoothie or shake recipes for times when I need something easy but healthy and any recipes for people who don't really like to cook but don't want to eat processed food. 

Many thanks to you all.

Christine P. 

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Mom2Addy's picture
Replies 1
Last reply 10/20/2015 - 7:29pm
Replies by: Jubes

After 4 doses of Nivo my husband's RA (Rheumatoid Arthritis) factor shot up to 111; normal is 0-13. Does anyone know if that's reversible? He's off the meds and unlikely can continue that drug. He's stage IV; been through two rounds of brain mets, nodules in his arms, back, legs, chest and stomach wall and one met in his stomach lining. We've done Interferon in 2012, IPI earlier this year, Nivo   and SRS. Thank you!

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Scooby123's picture
Replies 9
Last reply 10/22/2015 - 7:04am

Hi everyone,

can anyone tell me if they have had itching legs plus I know I had six mels bottom of spin and it feels like my skin is burning and plus I could easally scratch it. Not seeing my consultant till 5th November .


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JimsWife's picture
Replies 33
Last reply 10/29/2015 - 9:29pm

My husband passed away on September 18th, just 9 months after his diagnosis. A brief history: primary mole diagnosed melanoma in situ in 2007, became symptomatic and discovered on December 23, 2014 that it had metastized to his brain, lungs, and spine. He did WBR, SRS, Temodar, and the tafinlar/mekinist combo.

He entered the hospital on Tuesday September 8th (1 day after our 2 year anniversary) and came home to pass away 10 days later. When he entered the hospital, he displayed stroke like symptoms, which was actually a focal seziure and continued to have massive seziures that left him immobile and unable to speak by the time he got home. We always knew the combo would stop working at some point and when it did, we had plans to do more radiation and Keytruda. However, the cancer progressed too fast once we realized and the seziures were too frequent. We didn't have time to react.

He leaves behind his 3 month old daughter and myself (along with 4 brothers and his parents). The world truly lost a great man. He was 35.

I visited these boards regularly and am thankful for all of you who continue to fight the good fight. Keep fighting. I will pray that all of you that are plagued by this awful beast of a disease can one day live melanoma free.

With love,


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Birdlo's picture
Replies 6
Last reply 10/21/2015 - 8:59pm
Replies by: momof4boys, Birdlo, Anonymous, JuTMSY4

I'm trying to make the decision as to whether to go ahead with a CLND of my right groin (for micromets--3 cells!--in 1 lymph node), and I'm having a pretty hard time.

Has anyone here had a LND at Huntsman Cancer in Salt Lake City? In addition to getting second opinions, and possibly having my slides read by another pathologist, I'm also just wanting to make sure that if I do go ahead with the surgery, that I'm going to the right surgeon. I know that a surgeon's experience, skill, outcomes vary widely. "Reviews" of my surgeon, Dr. Andtbacka, are good, but they speak mostly to bedside manner, etc. They do not cover the gnitty gritty of surgical procedures and outcomes. 

I do realize this is longshot, maybe a big one, but just wanted to see if by chance anyone else has been working with Huntsman, and specifically with Dr. Andtbacka.

I live in Idaho where there is no comprehensive cancer center, so I've travelled to SLC. But if need be, I'll travel further. To Seattle. Or to where I have family, in Philadelphia.

Thanks to all. 

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Hi All,

I have been struggling with some adverse reactions to pembro and had to stop my infusions.  I got some good advice from Celeste and also found this site which is being updated all the time and has lots of fairly easy to read information. Hope I am clever enough to attach the link...

My irAE's are pretty severe so it's interesting to see that they recommened going in hard early with steroids or other immune suppressors to prevent more severe toxicity later.


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jas02r's picture
Replies 7
Last reply 10/20/2015 - 6:52pm

Dad was diagnosed stage 4 on 7/22. His only treatments thus far have been2 rounds of opdivo, which he had to stop due to liver levels. Fast forward to last tuesday he had a preforated stomach ulcer so emergency surgery was done and he recovered very fast. On saturday morning he had a seizure and ct scan ahowed 4 or 5 brain mets and blood on brain. He lost the ability to use reconizable words for about 2 days but due to meds reducing brain swelling his speech is good again. Met with a radiologist onc yoday said they could start whole radiology tomorrow. Problem is his liver is more tumor then liver and docs say he is in liver failure is very jaundice and has high ast and alt levels. On top of all this his appeal for mekintist and taflinar were approved friday late. So should we do the brain radiation and then start pd1 combo or just start pallative care. I'm lost as i sit by my diying dads icu bed side tonight.

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Sflynn's picture
Replies 8
Last reply 10/21/2015 - 7:38pm
Replies by: Sflynn, kylez, Patina, Mat, Anonymous

Hello everyone.... I am new to the site and I am here on behalf of my husband. He was diagnosed with stage 4 metastatic melanoma in august. Multiple catscans and pet scanned revealed 2 mets in his lung and 10 in his brain. As of today..they have no source of orgin. 

He had 10 whole brain radiation therapy treatments to date and we have 2 Stereotactic treatments scheduled for this week. 

He also had 1 opdivo treatment but unfortunately he developed a severe rash that 4 weeks later we are still battling  to clear up. No new treatment has been discussed. I feel that everyday that goes by without a treatment is precious time waisted....

Looking for other treatments that may help him... any suggestions????

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mdoh's picture
Replies 5
Last reply 10/26/2015 - 9:58pm
Replies by: kylez, mdoh, Kim K, Christine.P, Jubes

Hello all - I was diagnosed with stage 2a melanoma in June.  Oncologist did a baseline CT scan in August and saw some spots on my lungs and thyroid, so I'm going back for another CT scan/ultrasound in early November.  Scanxiety is building.  My question is - Do I need to get my yearly mammogram if I'm getting these CT scans? Would prefer to avoid any unnecessary radiation.

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Hi all,

We're anticipating the FDA will approve TVEC for the treatment of advanced melanoma within the next few weeks. We were contacted by a reporter who is writing an article about the approval and would like to speak with a patient who has taken TVEC. If you have taken TVEC and would like to share your experience with the reporter, please contact me at His deadline is tomorrow, October 20, 2015.

Thank you,
Lauren - MRF

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emagdnim83's picture
Replies 4
Last reply 10/21/2015 - 10:07pm

So I've posted 2 topics about my fathers condition in the last weeks. Unfortunately i think he has now reached his final days. 

Last Thursday he got an infusion with human albumine. The next Day (Friday) he was extremely exhausted, short of breath and had a hard time even to get out of bed and go to the bathroom. In the evening we noticed that he forgot some things  - he couldn't remember some names and became a bit confused. First, we thought it was because of his exhaustion or tiredness or maybe a side effect from the infusion. On Saturday, things got a bit worse (confusion/blurred sight, abdominal pain) but he could speak and walk at least a bit. On Sunday he stayed in bed most of the day and spoke very slow but things got then much worse so we called in a nurse from the palliative care who gave him strong pain meds because he mainly complained about his severe abdominal pain. He slept until the evening and then got up a bit but he was totally confused. In the night it was a nightmare. He was then brought to the hospital early today morning - we now think he has got a stroke. he can't even recognize his children and is totally confused and not able to walk.

So now we can only wait, we don't have any new information yet. 

Please everyone, if you notice things like confusion, blurred sight or not being able to walk - do not only think of side effects from cancer therapy (he was on nivolumab) but also check for strokes!



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