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 6
Last reply 9/25/2013 - 1:44am
Replies by: MattF, JoshF, POW, doro, DeniseK, SABKLYN

After hearing from many of you, I stopped feeling sorry for myself. Though it consumes much of my thought, I'm trying to keep a positive attitude and push forward. So I just wanted to update everyone as to what I've done in my fight.


Opted to have surgery at Northwestern Memorial. All of my files had already bent sent over electroincally except path reports from surgery last week. They also wanted path slides. I went grabbed everything and drove down to Northwestern. Surgical Oncologist came out and met me and said she would schedule me in for Wednesday.

So by time I got home she called and scheduled meetings with surgeons (surgical oncologist & plastics), has PET/CT lined up, Brain MRI...all on Wednesday!!!! Not sure if I'll get results because I see surgeons she could with short notice. I'm not complaining. Now just need to deal with scanxiety!!!! I just had them at end of Feb...all clear!!! Guess some things never change...only difference is that I have melanoma again so more worried about spread!! Keep saying...please be local!!!!!! Also, pathology report was not terms of how it was written. No miotic rate, surgery report said thinks it's a lymph node but path says nothing, nothing about margins though surgeon assured me he got everything  and now we look for metastatic disease (i.e. scans) and do another surgery for microscopic cells. This sound normal?

Anyway, I received call from medical oncologist who wanted to bring me up to speed on pathology, next steps etc... I informed her what I did and where I'm going for surgery and she applauded me for moving fast and said I picked great place to have surgery. I asked about pathology and how written...she said probably not lymph node. Of course I asked about distant metastasis given scans 6 months ago...of course she didn't say oh everything will be great...only that given the history and recent tests she wouldn't be suprosed if they were clear but docotors/oncologists don't go on speculative...need definitive.

So that's it....pray for clear scans.....and to get on with it!! Thanks everyone for being supportive. I've heard many of you're your own best advocate!!!!

Wishing you all the best!!!



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

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MaryD's picture
Replies 11
Last reply 9/25/2013 - 12:39am

This coming January, 2014, it will be 13 years since I was first diagnosed with melanoma on my upper left arms.  Five recurrrences, including progression to stage IV in 2007 via a solitary lung nodule, and five treatments later including interferon, radiation, peptide vaccines, Ipilumimab, and pulsed IL2, I am happy to say that today, I reached the milestone of being free of disease for 5 years.

There was a time I could have never imagined reaching this point but with the help of some wonderful health care professionals that have supported me along this journey including Drs Jai Balkissoon, Jeffrey Weber, and David Minor,  I am here to validate that there is hope!

But without a doubt, this MPIP family was the greatest source of support throughout the years providing invaluable information, education, and friendships that will last a lifetime.

Please know there is hope - we have more ammunition to fight melanoma than ever before and there are more and more long term survivors out there.



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I'm me, not a statistic. Praying to not be one for years yet.

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Private  messaging between POW and I via the profile contact route worked today.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 7
Last reply 9/24/2013 - 5:44pm
Replies by: JerryfromFauq, POW, Momrn5

Good Morning,

Yesterday, I tried the the "private message" function on the new website. I sent ouy a few "private" messages and have received NO responsed back.

Yes, maybe the MPIP members did not want to repy to my message.

HOWEVER< can anyone VERIFY the private message function is working with the new website.

Thanks for your help.


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MattF's picture
Replies 4
Last reply 9/24/2013 - 5:05pm
Replies by: JerryfromFauq, GAngel, JoshF, POW

So I met with the Chief of Head & neck Surgery at City Of Hope. They actually scheduled everything during this appointment...pre op, surgery and follow on appt with Radiation Oncologist and Melanoma Oncologist.

Surgery, Parotidectomy and Lymph Node Dissection for 2 Masses of metastatic melanoma in my salivary glands is scheduled for next Wed.

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jogo's picture
Replies 3
Last reply 9/24/2013 - 3:14pm
Replies by: JerryfromFauq, jogo, Momrn5

This is all happening very quickly for me.  I felt a lump on the left side of my face May 6th.  June 6th, I had a total left parotidectomy and radical disection of the the lymph nodes/glands of the left side of my neck.  The primary melanoma was never located nor identified.  After testing and randomization, my first infusion was July 30th.  I had 2 infusions of ipilimumab and had diarreah for a few days before I was to have my 3rd infusion.  It [diarreah] stopped after 2 days of Budesonide and Imodium.  It [diarreah] resumed three days later, the weekend before my rescheduled [3rd] infusion.  I also had a temperarure of 101.7 F.  I was hospitalized.   A colonoscopy confirmed ipilimummab induced colotis.  I'm on a steroid regemin [Prednisone starting 120 mg and tapering].  The oncology team told me I will remain in the clinical trial but will not be resuming the infusions. I had just 2 infusions of 3 mg/ Kg body weight.   I am now dealing with colotis.   It's been a five month roller coater ride.  The half full glass theory is that my immune system has been activated.  Now it needs direction.

My father died of metastic melanoma January 1989.  I turned 71 this past March.  I joined the clinical trial [E 1609] for my dad, my daughters, and my grandchildren.]


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JoshF's picture
Replies 6
Last reply 9/24/2013 - 2:38pm

One thing I didn't mention was that BRAF tests came back negative. I'm not sure whether that's a good thing or bad thing. Can someone shed light on this? I know it excludes someone who is braf negative from many treatments but don't understand it much outside of that.

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

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casagrayson's picture
Replies 5
Last reply 9/24/2013 - 7:57am

I haven't seen Denise on the forum in several weeks.  Last time she posted she was having a really tough time.  I'm hoping she will see this and check in.  Does anyone here have another way to contact her?

Strength and Courage,


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sbrooks90's picture
Replies 2
Last reply 9/23/2013 - 7:58am
Replies by: POW, blden2186

Hello Everyone,

I received a strange email today from someone on the MPIP board asking me... since I was a stage III patient to do a 40 min phone survey for money (that it would help other patients etc etc). Just wondering if this is real or not and has anyone had experience with this before? I am very skeptical



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For stage 4 melanoma with nodules in the lung, oncologists are giving the choice of interleukin 2 or PD1. What are the differences between these two options?
IgorPuzanovMD (Physician - Oncology (Verified) ) - 06 / 05 / 2013

HD-IL2, is FDA approved since 1992, is a taxing therapy delivered best in specialized centers of excellence as inpatient intravenous therapy (5 days in hospital, 9 days recovery at home, 5 days in hospital) which was shown to cure 5-8% of patients and help stabilize or shrink disease in additional 20-25% (usually for 7-24 months).

PD-1 therapies are very recent, but with exciting potential to be delivered on outpatient basis, in a vein, every 2-3 weeks and with objective substantial shrinkage in 20-50% of patients. Long term results from Dr. Sznol reported at ASCO 2013 suggest durability of these responses for 24 months. However, it is not yet clear if the long term cures will be observed at the same (or better/worse) rate than with IL-2.

Currently, I encourage patients to enroll on PD1 or PDL1 trials when available as HD IL-2 can be given as standard of care after that therapy. Some patients unfortunately will not be healthy enough to get IL-2 after PD1. If that is a major concern, HD IL-2 can be given first. However, some PD 1 trials will not allow prior HD IL-2 or may close by the time progression after IL-2 develops.

It is a decision best made with your treating physician.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 7
Last reply 9/22/2013 - 2:11pm
Replies by: Anonymous, POW, Janner


I am a senior citizen and get confused when it comes to computer things.

With the old website you could go to the profile page of the MPIP member and you were able to email the member using the website form.

I have looked on the profile pages and I cannot determine how I can send a "private" message to the member.

Please tell me how to contact MPIP members via their profile page or any other way.

Thank You


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Momrn5's picture
Replies 15
Last reply 9/22/2013 - 10:52am

SLN Positive. Brings me to stage 3. I guess I am in a fight for my life after never being sick a day. I have been reading this site since my biopsy. Have learned a lot about melanoma from all of you but I don't want to be here. If you get my drift. Appt. next week with surgical onc. to discuss CLND. What is out there for stage 3? Is it ever curable? Or are we always just waiting? Still have to tell the kids. Don't know if I will be able to keep it together.

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eddiealmost's picture
Replies 8
Last reply 9/22/2013 - 5:34am
Replies by: eddiealmost, Janner

I have dysplastic nevi syndrome with 100's if moles, at least 15 moderate dysplastic, and 2 recent severe dysplastic.

My derm used a scalpel to dee a very deep cutting of the severe dysplastic mole, not a complete excision. She went very deep!!! There was no brown skin left (I am white) and the removed lesion had a lot of normal looking skin attached to it.

The margins came back as not clear and the derm did a wide complete excision down to the muscle.

The severe dysplastic mole was growing down into the skin, not staying on the surface.

Can moles grow vertically and still be benign??? Does this also mean that th atypical cells can grow in I pigmented cells??

I am glad that it was not a melanoma, but am concerned that hey might have made a mistake considering how deep it grew.

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My husband was in the clincial trial interferon vs. ipi.  He was able to get all four induction infusions.  About 10 days after his fourth infusion, he developed colitis from the ipi.  That landed him in the hospital for five days.  Last Friday, 25 days post ipi, he was hospitalized again for hepatoxicity.  His liver numbers are still up.  So far, this hospital stay is day seven and he is still inpatient.

He had CT scans on 2/24/12.  Those results have come back.  He now has spots on his spine and right pelvis.  They did a bone biopsy Tuesday on the right pelvis. We are still awaiting those results.

His oncologist is not recommending any further immunotherapy due to the reaction he has encountered with the ipi.  If the biopsy shows melanoma, (which I will be shocked if its not) she is saying chemotherapy.

In your experience, what drugs are we likely to see chemotherapy wise?

If it is melanoma again, that will move him to Stage 4 from Stage 3b.

I need your help to know what our next step is or should be.

We don't know how strong we are until being strong is the only choice we have.

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