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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Anonymous's picture
Replies 0

im donating zelboraf two boxes (vemurafenib) anyone interested send me an email and ill send you a response, it would have to be through my oncologist, ok? just to check you have been prescribed the medicine



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Anonymous's picture
Replies 0

im donating zelboraf vemurafenib two boxes, anyone interested? leave you email and ill send you a response there

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mom3girlsFL's picture
Replies 8
Last reply 9/25/2015 - 10:29pm

Hi Everyone,

It has been a very long time since I've been here.  I guess after so many clean scans and decent health I just went about life.  I really, truly NEVER thought I'd find my way back here.  I guess I am searching for some positive feedback as I begin a new melanoma journey.  I don't know why this time feels different, but I am a bit freaked out - unusual because I've always prided myself with a strong and positive outlook.  Maybe it's because the past two weeks have been unbelievable and I've just now let myself settle with all the news?

I promise to update my profile soon but briefly my history with mel started in 2003 stage 1 surgery, all cured. In 2010 I had recurrence in my groin lymph nodes, had surgery and did hd interferon for a month and 1 month self injection but stopped due to recurrence.  Had surgery again and have had clean scans until two weeks ago.  Through CT , PET and biopsy I have multiple enlarged retroperitoneal nodes, para aortic nodes, and lung node involvement.  Several of the nodes measure up to and slightly above 2 cm.

Oncologist is starting me on Tafinlar and Mekinist.  This process just started yesterday so I should hear from pharmacy by the end of the week.  Ive read it is very expensive.  Onc also wants me to have surgery consult, which i have scheduled Thursday, but he feels there are too many to consider surgery at this point.  I am also having Brain MRI Thursday.

I feel like I have been living in the twilight zone for two weeks.  It broke my heart to tell my husband and children.  They were so young before and they still are.  My oldest is special needs, almost 17.  My other two are (almost) 15, and 12.

PLEASE tell me your good stories and your positive experience with taf/mek, but please tell me also what to expect, no sugar coating!  I am scared.

God Bless this MPIP community!

Do not fear tomorrow, God is already there.

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dentholla's picture
Replies 3
Last reply 10/3/2015 - 4:18pm
Replies by: Beehappy, dentholla, geriakt

Today marks week 12 for my husband on the Ipi versus Nivo trial at Texas Oncology.  He is Stage iiib and we are hoping for the best as scans are already underway.  We should meet with our doctor later today to see if we can proceed with treatment.  

He and I both feel fortunate as he has experienced very little side effects.  He is either getting 9mg of Ipi or 3mg of Nivo.  A little fatigue the day of/after treatments.  At the beginning had a slight rash on his arm but it went away.  A little upset stomach here and there but to date hasn't had to offset it with meds.  Bloodwork has been in the normal range and low LDH when they've tested him for it.  He will be tested for LDH again today.

I've read so many positive things about this trial and hopeful that the efficacy we all expect to see with these drugs being used in adjuvant setting prove in the research.  Here's to hope!!!

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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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