MPIP: Melanoma Patients Information Page

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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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bcl's picture
Replies 5
Last reply 11/17/2010 - 2:00am
Replies by: bcl, Anonymous, kwahlbin, glewis923, lhaley

And if you are reading this, please also plan to advise us in future (on both boards) when you are changing something as significant as the site URL  - I  gave the old one out to a stranger and am not sure now if she will ever find the support she needs.

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Charlie S's picture
Replies 6
Last reply 11/16/2010 - 8:42pm

Some time ago, when this was MPIP, an upstart Don W started a website that to this day isstill maintained by him  hosted by Coleen, a melanoma survivor that runs an internet hosting company where people submitted photos of people and events relative to melanoma who chatted here and met one another.

It's worth a look to understand the history and community that existed because it matches names with faces.


Charlie S

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Melanoma Mom's picture
Replies 29
Last reply 11/17/2010 - 10:18am

My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist. The Dermatologist agreed it was a wart and that he would freeze it over 2-3 visits. The first freezing was in late July and then another two weeks later. When we returned to do the third treatment, the Derm. suggested we do a biopsy to see what virus we were dealing with, as it wasn't shrinking. He assured us he wasn't worried and certainly was not thinking it was cancer. 10 days later he called us from his home and said that he had never in his 25 years of practice been so shocked to get a diagnosis like this on an adolescent and that he had the lab double-check that they hadn't confused slides. He recommended we get follow-up care in Boston as soon as possible (we live in Maine).

We met with Oncologists at Dana-Farber and a surgeon at Children's Hospital soon afterwards. While their Pathologists had not found the biopsy to be definitively melanoma, we all agreed that the "wart" needed to be removed. In the meantime, the biopsy was sent to various specialists around the country as well as Paris. It was also decided that two other spots that popped up in July, one on his inner arm and one on his torso, that originally looked festered would be removed. These had also been frozen by the Derm. so they weren't able to tell the original formation. There was also a strange colored spot on his outer arm that had been there 10+ years that had the Dermatologists at Children's completely stumped. 

The surgery took 4 hours and he was released that day. The surgeon felt things went very well and he got clear margins. We returned the following week to learn that the "wart" had definitely tested as melanoma. The two spots from July were pre-melanoma (can't remember the medical term for that) and the 10+ year old spot was benign. Next up was PET/CT/brain MRI. Those all returned clear of tumors,  thank GOD. 

Two weeks ago a SNB was performed and they took 4 nodes. Again, our son was amazing and left for home the same day. This Thursday, November 18, we will receive word as to whether the cancer has spread to his nodes and what they suggest for treatment.

We continue to be shocked by this terrible turn of events. Our son is so bright (attends a private prep school), plays three seasons of sports and also rides his bike long distances - Maine to Quebec in two weeks this past summer. He feels, acts and looks the same as always. We have no family history of melanoma and believe me, the sun has never shone on his anus! None of our children have ever had a bad sunburn. The physicians all seem very perplexed with this strange case. They have ordered genetic testing for the 23rd.

Please keep my son in your thoughts and prayers. His dream is to attend the United States Naval Academy and become a Navy Seal. 

At this point, we welcome encouragement and stories on "beating the beast". If anyone knows of other young melanoma fighters, we would love to be in touch with them.


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2atlascedars's picture
Replies 5
Last reply 11/18/2010 - 8:46am

I am scheduled for a SNB and WLE (with skin graft) on my acral lentiginous melanoma on my heel this coming Friday (diagnosed 10/26), and I am finding it difficult to ensure that I will be covered by my insurance for my upcoming procedures.

Here are the details:
I was referred to a cancer center by my dermatologist (who is in my insurance network...Aetna), but only 1 of the three doctors caring for me at the cancer center is in my insurance network. I called the insurance company and they told me to have my dermatologist file a referral and pre-certification for the other two doctors. I did this, but the dermatologist's office staff told me that they should only have to provide the referral (which they have already done). They said that they are not prescribing the surgery, so they shouldn't be involved with the pre-cert. I also spoke with the Managed Care Representative at my cancer center and she said that if one doctor at the center is in my insurance network, then they all are because they use the same take tax code.

So...I have spoken with 3 different individuals involved in my care and they all said something different.  

Does anyone know the best way to handle this so I don't wind up with massive un-covered medical bills following my treatment and procedures?

Mark from California

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EricNJill's picture
Replies 3
Last reply 11/15/2010 - 10:58am
Replies by: KatyWI, King, washoegal

United Health Care only paid $8,000 of Eric's Medical Flight bill leaving us over $15,500 to pay ourselves.  The hospital used a company that was not in-network with our insurance.  I didn't know this could happen.  I thought if you were at an in-network hospital then all services used were in-network.  I even asked if the flight was a covered expense and they said yes because it was an emergency, I never imagined they would be out of network!

Does anyone have experience with this?  Thanks, JillNEric In OH

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NicOz's picture
Replies 9
Last reply 11/19/2010 - 12:24am

Love, love and adore my neurosurgeon. Was in hospital for 24 hours, from peri-op to discharge. That beautiful man removed a tumour (unfortunately it had to be done via a new hole in the head, but it's all good) and managed to stabilise my head without a single pin hole :) yay for me! It was termed a "mini-craniotomy". Sounds insignificant... and I like that :D

Of course, it's the worst haircut I've ever had, but eyebrows remained even, so one can't complain too loudly, eh? They sliced the temporalis muscle to get in there, and I HATE that, but it's ok. Getting less sore every day. Most importantly, it seems I am right to roll for G's dance recital in a couple of weeks :D

I had a mixed bag of results this time around. I have had a couple decrease in size, but have a few (3?) new mets, one of which is close to the thalamus and will be back to have SRS on that fairly soon so I'm told. It's causing a little bit of left sided weakness and numbness, but is surely do-able at the moment. Physio told me it is a little weaker than the right side, but still very strong, so that's ok.

They are still pushing full steam ahead to treat me, and as long as they're doing that, I am one very happy camper!

Life is good


Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Karen wife of Phil's picture
Replies 5
Last reply 11/17/2010 - 2:18pm

My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords...not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

In Sept. of 2008 he was diagnosed stage IV with MUP. He had a lemon sized tumor in his right lung which has not changed since then. He has had tumors removed from near his lower spine and several from his intestines. On Nov. 4 he finished his final dose of compassionate trial of Ipi. The next day we ended up back at the cancer center for an emergency CT scan because of pain in his stomach. They found a new intussusception  (folding over of the intestine) which in him usually indicates new tumors. The surgeon who also read the CT saw some things on the other side of the abdomen. As is usual with surgeons he wants to cure with the scalpel. We feel this may be the progression of the tumors before the regression. We are thinking if he can deal with the pain, it might be prudent to take a watch and see attitude. Phil has had so many abdominal surgeries that this is the last thing he wants to do. Has anyone else had a pretty severe progression and then a regression? We really would like some input from anyone who has dealt with this. This board has been such a wealth of info...we so appreciate everyone here!

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Nancy's picture
Replies 5
Last reply 11/15/2010 - 11:49am

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James from Sydney's picture
Replies 11
Last reply 11/14/2010 - 9:37pm

It seems like yesterday, Michael fought for just over 2 years and its been that long since his passing he was only 20. He made us proud the way he faced this disease, the way he saw life and death, how he spoke about his funeral, how he was more concerned about others than himself.

He was an extraordinary human being having achieved Distinctions at Sydney University in Science whilst doing Interferon for 12 months. He amazed us when he enrolled for year 2 just after his 2nd Craniotomy and whilst on Temador only 3 months before he passed.. My boy you are a Legend.

For all of you in the trenches i wish you to the  fight the fight of your life, don't accept everything the Doctors say to you no matter how qualified they are be pro actve and seek other opinions. To Caregivers especially Parents of young ones affected by Melanoma, listen to your children's opinion and needs it is their fight ask them what they would like you to do. I made some mistakes and acknowledged that, we talked and we parted arm in arm best of friends.

I know that its the Doctors and researchers that will find a Cure one day but it would never be possible without the incredible people both past and present that form this Community at MPIP. 

best wishes


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Anonymous's picture
Replies 11
Last reply 11/15/2010 - 12:04pm

I've never been known as shy, but since I am in the hospital and benefiting from the virtues of morphine, I jujust wanted to breech the subject of sex and cancer patients.

'm sure this is taboo, but I could care less..  Part of all of  us wants to be intimate with another, but cancer can get in the way....................but only if you let it..

Even though most posts wil be anon, I think others need the support.

So, is your level of intimacy more or less as a result of melanoma?

Talk about it if you want........................or not,.


I think this is an aspect of cancer that needs to be discussed, because I do think it is a deep dark secret of cancer people that is shrouded in darkness.


Then again, this post is morphine fueled.


CCharlie S.

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AndyD's picture
Replies 5
Last reply 11/16/2010 - 7:09pm

I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi - Yay! cheeky and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.

If you've had the ipi trial before, I was wondering how you feel physically and mentally? I felt tired, cranky, and somewhat confused for at least two months after my last influsion. Then I started to feel great (like my old self), but that only lasted a few weeks and now I seem to be regressing again...super tired and crummy feeling angry. I've had my blood work done and my gland levels are all normal (like thyroid). Do you think it takes a long time to get past ipi side-effects? Or is this simply how cancer progression feels? Will I ever feel like this again? smiley

Hope to hear your thoughts.

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MichaelFL's picture
Replies 4
Last reply 11/13/2010 - 9:27pm
Replies by: King, Becky, DebbieH, ValinMtl

Hello James.

I know it is already Sunday morning there in Australia, and I do not know if you will be able to come to the board today, so I just wanted to say that I will say a special toast for you and your son Michael.

As a parent, I also wanted to thank you for all you have done here both during and after, as yours was an event that no parent should have to endure, and for finding the strength to still stay on the board. I can't even begin to imagine how I would respond if it were to happen to me and my family.

"A toast to you" from the other side of the blue marble.


This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Sharon in Reno's picture
Replies 31
Last reply 11/30/2010 - 6:21pm

I'm not sure if I'm doing this right but I promised my sister that I would tell you what happened to her.I'm trying to keep that promise the best that I can..She signed on as Sharon in Reno.She told me that it was your love and support that kept her fighting.I went to stay w/her Aug.28th and she died Sept. 25th.I'm afraid to tell you how it went because there are many of you still fighting and many loved ones still hoping for NED.I will just say she was able to stay at home until 4 days before her death.I'm so thankful for hospice they kept me going and held me up when I thought I couldn't bare another moment.Sharon was 53 years old at her death and I'll be 55 this month.It was because of what we went through together that I now have made many changes in my life.She is at peace now.She left many people behind who are griefing but we are grateful not to watch her suffering any longer that was worse than the pain of not having her to hold anymore.She mostly wanted you to know how important she felt this web site was and thank you for the many times that you comforted her and advised her and gave her a safe,caring place to be when she just needed to "talk" with someone who understood what she was going through.I want to thank you also.Sincerely,Nina

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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washoegal's picture
Replies 8
Last reply 11/17/2010 - 12:51am

First the good news!  I am now 8 months NED!  Yahoo!  Quick review:  Diag Jan. 2010  3.1mm tumor RT , March 2010 SNB 2 nodes microscopic amounts of cancer, complete Lymph Node Dissection.  No other treatment.

My original Onc, who was in Santa Monica California, is now at Yale.  I followed up with the Dept head who is a brilliant man and has written tons of paper on melanoma.  However, he is not the doctor for me.  The nurse came in with the good news, the doctor follows up with  " if you survive melanoma" and starts giving statistics about recurrence rates, etc.  Boy, how to ruin a happy day! make a long story short, I don't think this is the guy for me.  If I need someone fighting for me, I'd like someone a little more positive.  Would like some recommendations:  San Francisco, Santa Monica, UCLA area, all OK.  Unfortunately, Nevada has no Melanoma specialists.



Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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churchwelldana's picture
Replies 15
Last reply 12/27/2014 - 12:37pm


I was recently diagnosed with stage 3 melanoma. I've had a SNB and one of the lymph nodes was positve for cancer. Now they will 
remove all the remaining lymph nodes from my groin. The nurse said the typical recovery time would be 4 weeks. Is that accurate? I'm a fourth grade school teacher and I was wondering when I might feel like returning to work.

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