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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JenC's picture
Replies 1
Last reply 11/29/2011 - 2:18pm
Replies by: washoegal

I check this board regularly... but I thought it was just infomational/ research so that I could keep on top of the treatment of this disease so I can help with the fight and keep in the loop for my two young kids.  I lost my husband to melanoma almost 5 months ago.  I was on here daily, fighting to find some info that would save him.  I got a lot of great info.  I just got results of my own biopsy - it is melanoma in situ.  All I can think of are my kids - how can I prevent them from going through all tlhe suffering that their daddy went through with such a strong family history. 

I am on the hunt again for any information.  In the meantime - just a WLE and watch and wait....... but  how can I watch and wait when I know what this "oh its nothing" can turn into a big something.  Is there anything else that I can do instead of just a WLE and wait?!?!?!  What choices do I have?  My husband had the same choice at stage 3.  I'm just beginning again, but is the current state of things the same as 2 years ago?  Unless I  let this spread I have no other option but wait?  I will go back to my clinical trial research, but it obviously didn't help my husband much.  What can I do differently?


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kristine's picture
Replies 3
Last reply 12/8/2011 - 9:25pm

does anyone know what encephalomalacia  means?  Is it bad?

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Judy in CA's picture
Replies 5
Last reply 12/20/2011 - 3:51pm

I have been in contact with Dr. O'Day.  He confirmed that he has parted ways with The Angeles Clinic.  He will be practicing in the Los Angeles area and he hopes to be seeing patients in early 2012!  If you would like to contact him, his email is

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Drew N's picture
Replies 2
Last reply 11/29/2011 - 8:53am
Replies by: Gene_S, akls

Diagnosed IIIB in December 2008. Just wanted to post and say no recurrences, and my latest CT was negative as well. What with all the promising new protocols, I may start buying extended warranties again.

Much love to all,


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Hello everyone! We are very pleased to be introducing our new Phone Buddy Program to the patient community, and I wanted to make sure that everyone on MPIP knew about it. This program is designed to match newly diagnosed individuals with trained volunteer who are, themselves, melanoma survivors. These volunteers will provide support and guidance to their "buddy" as they begin to navigate the melanoma landscape. Depending on the needs of the patient, these volunteer relationships can last anywhere from one phone call, to  weekly calls for a year.

I would be happy to discuss this program with anyone who might be interested in participating. We have trained volunteers ready to be matched up with buddies. You can read more here:

Please let me know if you are newly diagnosed and think a Phone Buddy would be helpful to you, and please share this information with your networks.

Take good care,

Mary Mendoza

National Director of Volunteer Services

(202) 347-9675      l

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emilypen's picture
Replies 2
Last reply 11/28/2011 - 2:34pm
Replies by: Lisa13, Becky

Hi All,

Just wanted to give you a quick update on my husband. We had scans last week, week 20 for Ipi response and week 8 for carbo/taxol response.

We finallly got some good news. No new mets and shrinkage in a good percentage of them. So whether its the chemo or the IPI something is keeping the disease in check. Woohoo!

The chemo drugs are really tough on his system and he had to have 4 bags of blood and a bag of platelets to get his counts up. They were seriously low...

Plus his radiation oncologist has started him on some radiation for his sacrum and spine, just to help resuce the tumour size there.

No new brain mets either!


So we just keep on keepin on.... he's super fatigued and not really hungry but as our babies due date keeps getting closer we were estatic to hear that there was no new cancer.

Hope everyone is doing well. Cannot believe it's almost Christmas.



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Karolina's picture
Replies 3
Last reply 11/29/2011 - 5:45pm
Replies by: Anonymous, Karolina, Janner

I may ask a silly question but I don’t quite understand what five-year survival refers to. What does it really mean? Does it mean that there is no data available what it happening with patients after 5 years since the cancer is diagnosed or does it mean that patients do not survive more then 5 year or patience who have survived 5 years with no further cancer diagnosis, are fully healed or what?

To clarify, I am reading various articles about desmoplastic melanoma and in every publication reference to five-year survival is provided and all statistics are based on 5 year. Why is  this 5 years so critical?


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MariaH's picture
Replies 10
Last reply 12/14/2011 - 7:01am

I am wondering if it would make more sense to do a "debulking" of tumors prior to systematic treatment.  It seems to me that the smaller the tumor burden, the better the chance for a durable response.

I realize that by removing tumors via surgery there is always the residual disease, but even if you can't remove all of them, wouldn't it make sense to get the majority out?

Just throwing this out there -

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colleenblue's picture
Replies 4
Last reply 11/27/2011 - 9:10pm
Replies by: colleenblue, Anonymous, Janner


I'm not sure I have any right to post on these boards. I haven't been diagnosed with anything, but I know my mind is going crazy with worry.  On Oct. 27 I took off my watch and noticed a raised pink mole/bump . I have never ever noticed it before. It was 3mm in diameter. It was round shape and flat. It didn't get bothered when I wore my watch, although my wrist has been red when I wear it.   There was no pain, itching, bleeding, etc. Well I ended up picking it off my arm. And now I just have a scar where it was that is shiny. I'm so afraid that it could have been nodular melanoma. It looked like that as well as some other benign lesions:( Any thoughts are appreciated.

God bless.


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Lisa13's picture
Replies 6
Last reply 11/28/2011 - 7:07am

As some of you may remember, my 12 week scan after ipi showed 50% regression and some had disappeared. 2 of them had grown a small amount, but we don't know if this is inflammation. On Wednesday, I have my 16 week scan and results and now I'm really nervous. I truly hope that the lung mets keep shrinking and the 2 that grew a tad are now starting to shrink.

That being said, does anybody know if a scan looks successful after 12 weeks, can it all of a sudden change to something bad?  I just can't imagine going from good to bad, but I know these things could happen.  Now I know there is some concern over the 2 that grew, but I could have them removed.  If 2 of them grew and the rest continued to shrink, can you reintroduce ipi because of a "mixed result" scenerio? 



Many impossible things have been accomplished for those who refuse to quit

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Jerry from Cape Cod's picture
Replies 13
Last reply 11/30/2011 - 6:44am

hello friends,

just a real quick update from rehab.  After 25 days inpatient I was moved to rehab on Thanksgiving.  What a beautiful day!

I want to thank you all for your thoughts and prayers.  Special thanks to Charlie and keeping everybody updated.  Looks like he will have a few weeks here while I regain strength and hopefully the ability to walk.

Special thanks to software program Dragon speaking naturally which allows me to communicate so easily without the use of the keyboard.

I'll keep you all posted as time allows.

Jerry from Cape Cod.




It's about kickin' Melanoma's butt! "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." in memory of NicOz

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windy's picture
Replies 4
Last reply 11/28/2011 - 10:27am

Happy belated Thanksgiving to everyone. I am requesting information from anyone that has had painful feet and swollen hands while on Zelboraf. I have been taking it for about 5 weeks now. The rash has taken over my face, head, arms and chest. I've broke out in several places with warts. I must admit that these are bothersome - but they are better than the side affects from biochemical treatments. Any tips would be welcome. God bless you all. Thanks.

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Kosta's picture
Replies 10
Last reply 11/28/2011 - 8:15am

There is so much I want to say but first a big THANK YOU! Thank you for being the Husband, Father, Grandfather and Friend.

You personified life’s true meaning. “LOVE”. You loved everybody including those that did you harm. Your kindness and your smile touched everybody around you, even those that didn’t understand a word of Greek understood the language your eyes ...and smile spoke. My sorrow is great but I will keep your memory intact with goodness and kindness.

Even in your darkest moments you guided us with your peace. You fought very hard and didn’t give up for us. My Dad, my Hero, my Guiding Light. The person I will always be proud to call “MY DAD” I LOVE YOU and will greatly miss you. 

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Karolina's picture
Replies 14
Last reply 11/29/2011 - 2:55am
Replies by: Karolina, DonW, MichaelFL, Anonymous, W.


i was wondering if it is possible to have a melanoma lump as big as 70mm if as so far I was reading about Breslow's scacle up to 10mm really? Please advise as I am confused...

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LynnLuc's picture
Replies 5
Last reply 11/28/2011 - 11:40pm
Replies by: LynnLuc, chet, MariaH

Trial Information

Study of MK-3475 in Participants With Progressively Locally Advanced or Metastatic Carcinomas & Melanoma (P07990/MK-3475-001 AM2)

Official Title: Phase I Study of Single Agent MK-3475 in Patients With Progressively Locally Advanced or Metastatic Carcinomas & Melanoma


In Part A of this study, the dose of intravenous (IV) MK-3475 will be escalated to find the maximum tolerated dose (MTD) for participants with a histologically or cytologically confirmed diagnosis of any type of carcinoma or melanoma (MEL). Part B of the study will explore the efficacy of the drug at the MTD in participants with advanced or metastatic MEL.

Phase: Phase 1

Locations (1)

Facility and Contact

United States
San Antonio
Investigational Site 1

Overall Contacts

SP Clinical Trial Registry Call Center

NCT ID:NCT01295827

Date Last Changed: October 21, 2011

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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