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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DZnDef's picture
Replies 1
Last reply 1/10/2015 - 10:33am
Replies by: Anonymous

This is a fascinating one-hour discussion on cannabis oil for those curious about it.  The talk is free at this website for the rest of the day (you don't even have to provide an email address) but I believe they're taking it down after today (in other words, you'd have to be a subscriber to listen to it after today).


Maggie - Stave IV (lung mets unknown primary) since July 2012

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milerstar1's picture
Replies 6
Last reply 1/12/2015 - 1:42pm

After 8 mos of being NED just had scan come back with multiple lesions on liver and lymph nodes in area also affected.  Was originally diagnosed in Aug 2011, did a year of interferon after left side ALND. In May 2014 it showed up in right side axillary node, so had complete ALND on that side as well.  Am pending MRI of brain to rule that out and PET scan next week to determine total presence.  Consulted with my own doc, a doc at KU med and Mayo and all 3 say combo therapy BRAF inhibitor and MEK inhibitor.  Was not given good prognosis if this doesn't work.  PLEASE, would like any input, suggestions possible from similar cases.  I have 3 kids and a wife at home.

"Do not fear or be dismayed for the Lord your God is with you always." - Jos 1:9

"To Give Anything Less Than Your Best is to Sacrifice the Gift" - Steve Prefontaine

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susan-scalp MM 2014's picture
Replies 2
Last reply 1/9/2015 - 9:30pm

Good day to all of you and your loved ones fighting the battle! I have a question I hope someone may know an answer to.  Does having a tattoo increase risk of getting Melanoma? Curious because both my cousin and I got tattooed the same day. She died from Melanoma and I am now battling Melanoma. To be fair, we also both grew up sunburning on the beautiful beaches of Southern California which I know is most likely the contributing factor or even a genetic possiblitly. Thank you ahead for any replies or knowlege about this.


It is well with my soul!

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JoshF's picture
Replies 13
Last reply 1/10/2015 - 11:02am
Replies by: JoshF, Bubbles, arthurjedi007, Ed Williams, Anonymous, Prd10

Saw surgeon for MRI results today. There's a 4.75mm nodule that can't be ruled out for recurrence. So he scheduled surgery for Tuesday to go in and get it. I'm distraught once again as many of you know I've been down this path just over a year ago which eventually led to my Stage 4 diagnosis with metastasis to lungs. He wants to have a pathologist there on Tuesday to test tissue to ensure margins are this something they can do? I thought special staining is required? Anyway this is where I'm at:


Chances of this being something other than recurrence? He said suture granuloma is possible and I asked about scar tissue he said MRI showed nodule was different than surrounding tissue.

With most likely having a recurrence does this mean the ipi and IL-2 I did from Oct 2013-Jan 2014 didn't work...or rather stopped working? I had a scan in Oct that still left me at NED.

Can this be only a local recurrence and immuno drugs are still working? I'm just so confused, everyone was convinced I was on a good path to being NED.

Should I ask for SNLB at same time of surgery on Tuesday? I have a well respected Head & Neck Surgeon who knows melanoma but now I'm questioning going to surgical oncologist. I asked him if he was comfortable doing surgery and he said let's do it. He did the surgery in Sept 2013 and was good.

I'm just not sure what to do or where this leaves me....recurrence a year later. I fight to stay positive but that dark side looms over me....I know many of you have been through the ringer more than I have; I'm just trying to grasp a glimpse of hope here.


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

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powell1's picture
Replies 1
Last reply 1/9/2015 - 10:48am
Replies by: Janner

I had a spot on my left cheek removed by derm in May 2014. Pathology report came back fine. A couple of months ago 3 small spots popped up in same location. Went to derm and she said they need to be removed by plastic surgeon. She also asked pathology to run new slides on original spot removed in May. She told me she would call the second week in January with results and appt. for plastic surgeon. She called out of the blue on 12/22/14 with dx of melanoma. I was in the MOHS clinic for consult the next day and had the surgery on 1/2/15, a week ago. I am 43, female and now have 20 stitches in my face, black eye etc. I see the surgeon today for test results and stitch removal. What questions should I ask? My family is riddled with dad had undifferentiated carcinoma on his face resulting in major surgery with lymph node removal, etc. Luckily, he was fine and required no more treatment. Since then he has had prostate cancer but they got that too. My mom had ovarian cancer 5yrs. ago and is o.k. I am freaking out since both of them have positive cancer history but never at my age....they were both in their 60's. I also have an aunt with kidney cancer. So, what questions should I ask the surgeon? Do I need any kind of other tests to make sure I don't have cancer elsewhere? Also having issues with my appearance. Thanks so much!

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Anonymous's picture
Replies 7
Last reply 1/11/2015 - 1:55pm

My husband had great n.e.d. scans after dabra/mek treatment for a recurrence at the surgical site of melanoma. Then a serious side effect caused him to have to stop using it an he switched to IPI.  Now three weeks after first IPI treatment, there is a lump growing again. They said we have to keep using IPI and wait to see if the lump changes.  Cancer sites state things like people with local recurrences like this after surgery have lower survival rates. How the heck is anybody expected to live with this stress? It's driving us nuts.  We don't know if we have hope or not. Thanks for listening. Just venting.


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Anonymous's picture
Replies 4
Last reply 1/9/2015 - 2:21pm
Replies by: Anonymous, arthurjedi007, Colleen66, Momrn5

Hi out there. I am lookng for anyone that could give me any info on getting on disability. I am stageIV.I have been going to MD ANDERSON for about a year and a half and doing quite well  I have extreme fatigue and lymphadema in my right leg. It is quite painful and very swollen.I would aprreciate any advice or info..

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Anonymous's picture
Replies 3
Last reply 2/25/2015 - 6:48pm
Replies by: Anonymous, Tim--MRF, joelcairo

Can anyone tell me anything about Avastin?  My father's oncologist suggested he be part of a study combining Yervoy with Avastin.  He has stage 4 melanoma.  I've read a lot about Yervoy but nothing on Avastin.  Thank you.

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jwcollins's picture
Replies 8
Last reply 1/22/2015 - 4:04pm
Replies by: jwcollins, _Paul_, JoshF, kylez, Bubbles, DZnDef, Anonymous

First time here since 2002 when I had melanoma removed from scalp. Was just diagnosed with metastatic in my right lung, one larger tumor (7CM) and a couple more half that size. I finished pallative radiation today and am waiting to hear if I qualify for a clinical trial in Seattle. If I don't qualify, any advice? Surgery and chemo are not options I've been told. My oncologist is highly respected and I trust his advice but I thought I'd check here for other thoughts. Thanks! 

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BrianP's picture
Replies 3
Last reply 1/12/2015 - 5:32am

Some of you may remember I attended a patient forum back in October in Chicago and I posted about it here:


The videos from that forum are finally available for viewing here. I think they became available last month but I was just made aware of it.


I thought all the presentations were pretty good. One in particular I would recommend for someone looking for a feel-good hopeful story is the presentation by Rusty Cline. He's a survivor with an amazing story.


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Replies by: arthurjedi007, JustMeInCA, Anonymous, Nell, Bubbles, DZnDef

I have about a 10 x 9 cm tumor in my left shoulder and about the size of a small fist  in my left collar. Kind of looks like a hunchback mass of tissue pressing my left shoulder down a couple inches lower than it should. Keytruda  has helped slow down it's growth but is not enough. Also measuring with a tape measure it has increased 50% since my last scan in early November. From 4 x 4.5 inches to 6 x 6.5 inches. So I think the keytruda is losing the fight at least with this tumor.

My radiation doc has been ready to treat it for three weeks. It would be 45 gray in 15 treatments. He will not do a higher dose because of all the nerves I could end up with a dead arm. He believes the radiation would end the pain, probably return a lot of mobility to the arm. However he's not sure it would decrease the size of the tumor by any significant amount. He's at Saint Louis at Missouri Baptist. Also my Mayo medical onc believes this is what I should do because radiation has worked for me in the past.

My Saint Louis medical onc believes I should do surgery. It has taken three weeks and I should finally hear from his nurse what the surgeon says he can do. At best my medical onc believes the surgeon can remove as much of the tumors that can be safely removed without putting me in jeopardy. At worse they can only remove a small sample. But it is the surgeon who will really have to say. I also suspect it will probably be another three weeks before I can talk to the surgeon and they are fairly ready to start because it seems to take Siteman a long time to get things done. Not saying they are bad it just takes way longer than Missouri Baptist or Mayo which are the only other places I've had things done. I wouldn't be in such a hurry except the choking sensation I'm getting I think from the collar tumor seems to be getting worse fast.

Anyway I have my Mayo medical onc saying radiation and my Saint Louis medical onc saying surgery. I've had radiation four times and all have done me good. Except for a minor surgery to take out a couple Squamish stuff the zelboraf caused I've not had surgery.

Im at a loss of which doc to listen to. Any thoughts?


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michelle wiggins's picture
Replies 12
Last reply 1/9/2015 - 3:18pm
Replies by: democat, michelle wiggins, KMick, JoshF, SABKLYN, Linny, Anonymous

I had a stage 2A Malignant Melanoma in my thigh that was operated on almost a year ago. (Feb. 27th 2014). I have been back to the cancer center once for a check up (every 6 months), and my next check up will be next month.  My check up 6 months ago was fine, however, just lately,  the skin on my leg surrounding the scar is VERY numb.  Is this normal almost a year after surgery?  I am getting a little nervous, because it just feels odd!

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arthurjedi007's picture
Replies 8
Last reply 1/8/2015 - 11:04am

My doc said yesterday if my tumor sample tests for a certain h receptor I can do this trial. Apparently only 20 percent of us have it.

They take the tumor sample and grow the t-cells. Then two days of chemo to wipe out existing t-cells. Not sure If that is the same thing as dropping white blood cells to zero. Then they inject the new t-cells. When it works he said it is fantastic.

when I said that sounds like the til at nih he said the main difference is how they grow the cells.

So I dunno if this or the til at nih would be better? Very confusing to me.


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ymellin's picture
Replies 4
Last reply 1/7/2015 - 10:10am
Replies by: Anonymous, Janner

When have a diagnois of melanoma is it best to seek out a doctor who speicalize in just melanoma cancer?

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