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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ldub's picture
Replies 3
Last reply 9/23/2015 - 7:24pm

For those of you in Michigan or close to it, I just received a mailing for a free melanoma seminar at UM Ann Arbor on October 3.  It looks like a presentation that is being put on in conjunction with AIM at Melanoma.  Sessions include National Opinions on the State of Melanoma, Surgery in the Era of More Effective Therapies for Melanoma, Keeping Up with Changing Treatments for Advanced Melanoma and Importance of Clinical Trials.  It may be useful for anyone recently diagnosed and/or their families to gain a better understanding about managing this disease and learning about the most current treatments.  To register, the flyer instructs you to go to and click-on Symposiums.

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momof4boys's picture
Replies 1
Last reply 9/21/2015 - 10:40pm
Replies by: ET-SF

So I had my clnd done 2 years ago and out of nowhere I know have 2 little black dots on my scar. They are close together. I know it's not a stich because I have one of those on my wle. It's not a hair either. What do you guys think? I think I see my derm next month.

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BuzzBrown's picture
Replies 6
Last reply 9/23/2015 - 9:45pm

I have recently had wide local excision and lymph node removal. My DR reported that the cancer had not spread to my lymph nodes. My Breslow thickness was 2.65. My Clark level was IV. There was no ulceration. Mitotic rate of 2.  I go back for a surgical follow up in a couple of weeks.  I feel at a loss right now. I'm not sure what to do next. I almost feel that not enough has been done. I've not had an MRI and that makes me nervous. What if the cancer skipped that lymph node they took out and went somewhere else?  Also, to my knowledge, they did not do any genetic mutation testing on my cancer. The doctors really haven't told me much of anything other than the cancer hadn't spread. Should I be asking for additional treatment as a preventive measure or even a second opinion?  I just don't feel reassured yet that everything has been addressed.  I do have a family history of cancer. If anyone has any advice on questions to ask or other avenues to pursue please let me know. I just want to make sure all my bases are covered. I don't want to go back in 3 months for a checkup only to find out something was missed because I wasn't aggressive enough in my own treatment.  Thank you!

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jamieth29's picture
Replies 3
Last reply 9/22/2015 - 9:29am
Replies by: dentholla, jbronicki, DZnDef

Feel like the first positive news I've had. As i posted before i have been taking braf inhibitors for 6 weeks now. My local oncologist is on vacation but i am able to text him. I asked if he seen my ct results from scan last Thursday and he replied that the 18mm iliac lymph node that showed on last scan has shrunk to 7mm. I knew the drugs were working because the in transit spots that were visible on my scar had all shrunk. I so wish the braf drugs would keep working. They are powerful drugs. Hopefully this gets me back to surgically resectable. I celebrated by helping a buddy track a big 10pt buck and proceeded to have a couple to many beers today! I am from Wisconsin so today was great. He is going to text me full report tomorrow.

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Millykamp's picture
Replies 5
Last reply 9/22/2015 - 4:55pm

Made a post and have NO CLUE where it is..  


Ok ok I got an embarrassing question to ask 


I had WLE and SLNB done 5 days ago 


my WLE doesn't hurt at all  my SLNB does., I still have a dressing on it and some kind of derma bond tape of some source. They said it to stay on till I see the Dr. a few weeks 


The SLNB was done on the shoulder armpit area not quite under the armpit. Anyways. It hurts, even on my side of the breast.  I am wondering is it because do they cut deep? Cut into the nerves??   




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Dear MPIP Community:

We wanted to let you know about an upcoming melanoma support group, sponsored by CancerCare, that is currently recruiting patients. This 15-week online support group is for people diagnosed with melanoma who are currently receiving treatment. In this group led by an oncology social worker, patients give support to each other and share resources and information.

To join this group, you will need to complete our online registration process HERE

After joining this password-protected group, you can read and post messages 24 hours a day, 7 days a week.

The support group will run from October 1, 2015 - January 15, 2016.


Shelby - MRF




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_Paul_'s picture
Replies 2
Last reply 9/21/2015 - 11:57pm
Replies by: _Paul_, Bubbles

I thought I would take a minute to share my experience with this new drug.

I have been experiencing greater and greater fatigue the more Keytruda treatments I take. It got to the point that I needed to take 6 weeks off work. My oncologist suggested a Keytruda holiday, which did result in my fatigue resolving, but after the subsequent treatment it returned.

A friend suggested I try Provigil, a newer drug originally prescribed for those suffering from narcolepsy and other sleep related disorders. It is gaining popularity for off label uses, including ADD.

Anyway, I have been on it for the last several days and it has brought me back to feeling normal. It is a huge relief. I do urge anyone considering taking it though to consider the fact there are no long term studies available yet. So there is some risk for sure. For me, with all the other uncertainty one faces at stage 4, it is worth it for the quality of life.

I hope this post is useful to others suffering from fatigue.

- Paul

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Remi's picture
Replies 8
Last reply 9/21/2015 - 4:47am
Replies by: stars, Momofjake, ET-SF, Anonymous, Remi

I was diagnosed just over a year ago with 0.4mm VGP no miotic rate which was all removed and I had a year of quarterly check ups. I was discharged in June and haven't given it much thought since until this weekend as I have a red spot growing in the middle of my scar and can feel it as a tiny raised bit. Can you gets spots on a scar? Should I be concerned our would it be black if it was recurrence of melanoma?

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my son jake, 18, had his scans yesterday. He has been on keytruda for 3 months now. He looks amazing! All visible tumors are gone. He has a heavy tumor load w 20 in his liver and also lungs. Plus many in his spine, ribs, femurs, muscles etc. the new scan showed many bone mets gone. His spine only had 2 left. His ribs are almost clean, femurs too. His lungs and liver have stable mets with less activity. He did get one new tumor in his chest. 

My question is, does this mean Jake has years to live now? I mean he has no side effects to speak of. He plays tennis everyday and is a very healthy kid--other than stage 4 Mel!! 

Anyway, Jake is truly my miracle. I hear in my mind daily, "I answered your prayers". No matter what happens from here I feel so grateful! Jake is back to his life! 18 is a great time to live. 


kerri-mom of Jake

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Anonymous's picture
Replies 7
Last reply 9/24/2015 - 10:52pm
Replies by: geriakt, Anonymous, clthomas2131, kylez, ronald duclos, mrsaxde

Hi there - I am new to the site.  I am starting the Ipy versus Nivo trial soon and was wondering if anyone has been in it / is in it now / is signing up for it?  It is the blind trial so you don't know which treatment you are getting.  I am curious about the dire sounding side effects and what experience anyone has had dealing with them.  I have been told they are auto-immune related - colitis, hypothyroidism, pituitary issues, etc.  Thanks so much for any thoughts.  

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Dear Patient Community:

I wanted to let you know about  a unique and exciting opportunity with our partner, The Cancer Support Community:

  • Have you or a loved one been affected by melanoma?
  • Would you like to learn more about the risk of melanoma recurrence and have tools to navigate post-treatment survivorship?
  • Would you like to share your experience to help others?
  • Would you like to learn how to become more of an advocate in your own community?

The Cancer Support Community is hosting a two-day inaugural Patient Advocate Summit for people who are at high risk of melanoma recurrence and their caregivers. The Summit will take place in October in Philadelphia, Pennsylvania.  They are seeking approximately 20 volunteers from across the U.S. to participate. The Cancer Support Community will cover volunteer travel, meals and lodging to and from the Summit. If you are interested in participating, please complete the volunteer application at:

If you have any questions, please contact the Cancer Support Community at or call 202-650-5369. This program is in partnership with AIM at Melanoma, Melanoma International Foundation, the Melanoma Research Alliance and Melanoma Research Foundation.

The program is sponsored by Bristol-Myers Squibb. 


Shelby - MRF


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pookerpb's picture
Replies 10
Last reply 9/21/2015 - 10:45am

I see so many of you go great distances in hopes of being part of new trial, or seeing a specific Melanoma Specialist. My husband was just kicked out of his most recent trial, and although he can continue to have his Keytruda portion of it fairlyl close to us, I would like to look at other options since its obvious it is not working fast enough to keep his stage IV stable.

We have been traviling back and forth about 3 hrs for the last few years which seems like so far initially. After hundreds of trips it does get shorter as it seems. I know that there were several individuals who flew in to where we going from Chicago, NY, all over. With two young teens at home, the 3 hour drive for us one way, was exhausting enough and come home and do the day to day stuff that needs done.

I am curious how some of you travel and afford to travel to different places for consults and such? Once you are established in your trial, do you fly there for each and every treatment, scan etc?

I guess I am not willing to accept that continuing Keytruda when it isnt working for my husband. But I dont know how to proceed. I know my husband does not want to take the time away from family, traveling all over and God knows we dont have the money.

Can anyone give me any suggestions on maybe a way to make it feasible to do, or how you do it?  Especially for those still working?



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Hi all,

Since the MRF’s website redesign in late 2013, we have continued to explore ways to make and MPIP more efficient and user-friendly for the online melanoma community. We appreciate the feedback many of you have provided over the years!

Because the “Off-Topic Forum” receives very little traffic and there continues to be a very active and engaged community on the 'regular' MPIP forum, we will be removing the Off-Topic Forum from the website by October 16, 2015. As part of this change, we will redirect people to the MPIP community. We believe the few individuals who have posted melanoma-related questions in the Off-Topic Forum will appreciate being redirected to MPIP and will receive better support and information.

Let us know if you have any questions!

Shelby - MRF

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JennerFromIowa's picture
Replies 8
Last reply 9/18/2015 - 9:34pm

Hi everyone.  I haven't been on here for quite some time.  Hope all of you are doing alright and beating the beast.  I've been having some back pain radiating into hip and down my leg.  I have spinal stenosis so that is probably the culprit.  Had an MRI of my hip and all looked fine.  It did show a prominent inguinal lymph node that was borderline in size.  I wouldn't normally think too much about it but this is the hip where I had my WLE and the node basin where I had my Sentinel lymph node dissection and biopsies.  All were clear at that time.  Anyone have a prominent borderline lymph node?  Could use some adviice as to where to go from here.  I don't see my oncologist anymore.  They released me saying it wouldn't come back. We all know they can't determine that.  I was stage IIA with a high mitotic rate 13 years ago.  Thank you so much for any input!

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Anonymous's picture
Replies 8
Last reply 9/21/2015 - 8:51pm
Replies by: Anonymous, ET-SF, Never Gonna Stop, casagrayson

It's two days after being told my biopsy was cancerous, and I'm very worried.  I've been reading up on things as I can.  I have an appointment with a surgeon in 1.5 weeks for sentinel node removal and analysis.

I visited my GP today who had the pathalogy report.  The things I remember from the doctor are:

* superficial spreading

* Clark level IV (this is the part that scares me)

* non-ulcerated

* I saw the number .85mm but don't know in what context (the width was around 5 mm)

* mitosis of 1 / mm^2

Are there any words of encouragement or analysis of the data that I do know so far?  Or is it too early?


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