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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KimberlyVU's picture
Replies 6
Last reply 6/16/2016 - 10:51pm
Replies by: MoiraM, Janner, youngann, jenny22, jennunicorn, Anonymous

I am new to the board and wanted to see if anyone had advice on how to follow a thread.

i find that I am missing responses to posts I have made as well as other people's posts that I would like to follow the replies. 

is there an easier way other than logging in and checking each post for new replies?

thank you

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lakegirl67's picture
Replies 3
Last reply 6/18/2016 - 9:48am
Replies by: desertsun, debwray, Janner

Hello, I was diagnosed with melanoma in situ on my neck in April. Had the WLE done with 8mm clear margins. I am meeting my family Dr. today - should I request any bloodwork that may be helpful in light of my recent diagnosis? Thanks!

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Bubbles's picture
Replies 8
Last reply 6/16/2016 - 2:47pm

If you like cool graphs and clear explanations of where we've been, time line of new drug approvals, explanations and data from studies looking at targeted therapy, immunotherapy, and changes in target lesion based on treatment...this PDF linked in my post is awesome!!  Out of Italy a presentation by Dr. Ascierto.  Here you go:

Happy Wednesday!  - c

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laulamb's picture
Replies 6
Last reply 6/21/2016 - 3:08pm
Replies by: ilikepralinen, fortiz, MoiraM, KimberlyVU, Anonymous


How do you know if your melanoma is BRAF postive or not?  Should it be on the pathology report when they removed the sental lymph nodes and wide area excision? 


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Anonymous's picture
Replies 11
Last reply 6/18/2016 - 10:00am
Replies by: desertsun, Anonymous, MoiraM, DZnDef, youngann, Patrisa, Kimba67

I look at this site every day, searching for the NED stories, the hope, the peace.  Every turn theres something new.  Some days, like today I dont want to deal with it.  Sounds so selfish.  My husband is the one with stage IV.  This is his journey.  But some days its so much.

He finished 12 weeks of Opdivo on 4/19/16.  The side effects of the meds not only perisist, they seem to have increased.  His body is covered in bumps, his depression is horrible.  He's NOT  a spiritual man and goes to see a counselor....whos a christian counselor.  This didnt help him. 

Dr did more blood work and he's also stage II Kidney disease.  About to do another MRI on his brain since he is "foggy" all the time and dizzy. 

When does it end?  I just want to run away.

Sorry to vent. 

God bless everyone here.



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Anonymous's picture
Replies 1
Last reply 6/15/2016 - 4:42pm
Replies by: Julie in SoCal

Just had an excision with stitches for a atypical mole on my stomach.  Plastic surgeon showed me a pretty large piece of skin was taken out.  She used steri-strips and perscribed a strong antibotic 3x day for five days.  It's been 24 hours and I have a lot of bruising at the excision site.  She also said no antibotic ointment on the steri-stripes basically no additional care just watch for infection and to come back, 14 days to remove a couple outside stitches as the majority of stitches were dissolvable.  This is very different from prior care instructions for my last mole excision on my back a couple years ago.  Does this all sound normal?  Thx 

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mike.socal's picture
Replies 5
Last reply 6/15/2016 - 5:11pm

Hello, I am a 52 year old male, my battle began in January 2015. After brain surgery in March 2015 and having a tumor resected, I was diagnosed with stage IV metastatic melanoma, the primary has never been found. It has been controllable with radiosurgery to my brain, I've had 3 treatments for a few spots each time. But very recently it has gotten aggressive, I have multiple spots on my brain, multiple tumors on my lungs and one in a nerve sheath. I have never been put on immunotherapy, and believe it is past due. It looks like they are going to approve it, but they want me to do whole brain radiation first. If the MRF community could please give me their experience on immunotherapy drugs and whole brain radiation. I am in the process of getting a second opinion from a melanoma specialist not part of my health provider. Thank you in advance for your help and support.


MIke  So. Cali  stage iv

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Charlie S's picture
Replies 12
Last reply 6/30/2016 - 3:10am

I am done and no more.

No Cheers

Charlie S

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mjanssentx's picture
Replies 5
Last reply 6/15/2016 - 6:18pm

Just wanted to chime in with some more positive news.  My 1.75 year PET scan was completely clear.  Don't post as often because my "expertise" was Interferon and my experience has almost become "obsolete"....which I think would be considered universally good news.

Another happy news story....I met a patient in the waiting room and she told me she was diagnosed two years ago as a stage 4.  Her original prognosis was the standard 8-11 months to live.  She failed on Ipi but was doing great on Opdivo with many tumors retreating.  I had never met her before but she looked and sounded like she was doing great.  Just think, a couple of years ago...I would not have met her at all at 2 years into stage 4.

I don't think Cure is the right word yet...but hope is there.  I know there are some folks fighting for their lives out there (and we have lost some).  For the new folks here, do your homework.  The new stuff has real promise but it also carries significant challenges if not managed by a real Melanoma specialist.

For those that are Stage 1-3, I think it is safe to say melanoma is no longer a death sentence.  But you need to be vigilant.  Things like scan anxiety are very real.  Your life will never be the same after your diagnosis.  

Best wishes.



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Kim K's picture
Replies 6
Last reply 6/30/2016 - 3:13am

Just made 6 years this week.....  Was going to chime in with the other long term NED'ers.  Great article in cure about immunotherapy & targeted therapy, timing etc.  See post below.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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JoshF's picture
Replies 7
Last reply 6/15/2016 - 6:09pm

I know I've seen this or read this somewhere but I'm on overload...too much waiting, researching wondering what to do. Anyway simple question...

If one has failed ipi...then failed nivo. What is the possibility of responding to combo?

I went into complete remission on ipi...started Nivo late in 2015(dec) when I only had 1 subq and then as many of you came back in many places and grew quickly over 6 months.



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

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kpcollins31's picture
Replies 3
Last reply 6/16/2016 - 7:45pm

Thought I would post another hopeful message... scans yesterday came back clear again and I continue to be NED just about 2.5 years following a bowel resection in Jan 2014 where the melanoma had spread to my small intestine. Aside from that last surgery, I have not required any treatment but it is good to know that there are many more options available now than when I started this journey. I have been on the melanoma roller coaster for over 5 years now and that stage 4 diagnosis brings with it some anxiety and dark thoughts... but my message to those going through the same thing is to stay hopeful. NED could be one surgery or treatment away.



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The current issue of Cure magazine is all about Melanoma.

The online version can be read here.  See:

Best wishes,


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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dodgedh2's picture
Replies 7
Last reply 6/16/2016 - 8:00pm

I still browse this forum since it helped me through many difficult times. Just wanted to pop in and say that it is officially 8 years now of being NED at Stage 4. There is hope out there, but NED doesn't take away all the worry about recurrance. I'm living life differntly than I was before, and starting to feel that i do have a future. Still in my mind that I may not have a long future, but making evry day count with the grandkids and family now!

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FriendofMari's picture
Replies 4
Last reply 6/17/2016 - 10:55am

Hello my friends, As you know, my friend Mari is Fighting  Malignant melanoma with mts in liver and bones. The last Pet Scan showed 5 stable mts in liver, 3 stable mts on bones and one increased mts in liver (on the last pets it was 3.1 sm, now 4.1) - after 5 infusion of Keitryda.  Doctor said that Keytruda worked partially and as the analyses said Cd-117 positive in tumors, Doctor decided to continue treatment with Gleevec (Imatinib), once per day, 400 mg, for two months and check-up after two months. Is there any results, researches, private experience about this case, about this mutation? Can you help us? we are a  bit dissapointed...

thank you in advace


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