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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Erin_H's picture
Replies 6
Last reply 5/13/2014 - 8:27am
Replies by: Tina D, BrianP, Erin_H, Linny

Hello all


Sadly after 13 yrs melanoma returned. My primary was on my face and the new tumor was removed from my hip. 

Both times all scans came back clean and did not spread at the time. After getting the a-ok from the scans this time, I have been acting like I had Stage II in 2001 because the tumor this time was localized. Then I spoke to a doctor friend who gave me a reality check about the scariness of distant recurrence. 

Is there anyone out there that is facing something similar with distant recurrence and any advice. I'm going to visit a few specialists. 

I had Stage II at 24 and now Stage IV at 37 and I have a beautiful 2 year old that I want to see grow up. 


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cbs805's picture
Replies 6
Last reply 5/13/2014 - 8:18am
Replies by: Tina D, cbs805, sweetaugust, Anonymous, arthurjedi007

Interested to hear how patients are doing on expanded access PD1.  My husband has had chemo, surgeries, radiation, Cyberknife, 2 rounds of ipi and now 2 doses of PD1.  After first dose his LDH was lower and he has been feeling better than he has in a year.  He was diagnosed in April 2013.


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hannahcopeland1's picture
Replies 26
Last reply 5/20/2014 - 9:11am

Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

will I lose my hair? When?

i feel ignorant, which I try to avoid when it comes to my health.

Anyone experienced this particular drug and want share some knowledge with me?


Thanks for listening


Hannah Copeland

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Anonymous's picture
Replies 3
Last reply 5/16/2014 - 1:02am
Replies by: Jme, buffcody, POW

Hello out there, I was first diagnosed with melanoma cancer August 2011.Stage 3, was in remission until recently. March 29th, 2014 , pet scan showed three places of concern.  Had a biospy done, April 13, two places, one near my right kidney, the other on the left side, then a biospy of the right lung done on April 23.2014.

Doctor is recommending a second opinion at MD Anderson, Housten, Texas.  I am from south alabama.  At this point I am now classified as Stage 4, M1B, becuase those biospy showed melanoma cancer, one in the lung, and the other two places.


Now needing informaiton on any new therpies out there before they send me for clincial trials.

the only two my doctor mention was Yervoy and interferon.  Suggestions would be most helpful at his time since I ave time to do reserach befofe I ravel to Housten.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Scuba Doc's picture
Replies 2
Last reply 5/12/2014 - 8:39pm
Replies by: Bubbles, rosa1

Anyone know if any hospital starting the Expanded Access Program ( EPA ) for MK-3473 (Lambrolizumab/Pembrolizumab) is allowing melanoma patients to participate in the  EPA without having taken Ipilimumab first?

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candgvan's picture
Replies 13
Last reply 5/15/2014 - 11:57am


My daughter-in-law was diagnosed with Metastatic Melanoma in January after monthes of headaches and the neurosurgeon was "pretty sure" it was NOT melanoma on the MRI but I had a feeling it was due to my DIL's past history of a melanoma lesion (left abdomen/3 yrs ago) excised and no follow up.  The neurosurgeon did brain surgery and removed "as much as she could" and found it was melanoma.  Megan started whole head radiation.  That has been over for 3 monthes and the tumor is re-growing, quickly.  It is already back up to 2.6 cm. What are the latest, most effective treatments for BRAIN mets. She has had 4 rounds of IPI for the one node that was positive but to my inderstanding, most IV therapies won't help the brain tumor.  There is SO MUCH INFO out there but none seem specific to her situation.  She is 26 yrs old. She is to start HD IL-2 soon, should this be postponed in light of the brain tumor re-growth? Is there a more DIRECT treatment for the brain tumor that should have/could be given/done/injected INTO the tumor DURING brain surgery? Sorry...lots of questions. Just want to help advocate for her. Thank you for ANY advice. If it is helpful, we live in the midwest (Iowa).


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sofistef's picture
Replies 7
Last reply 5/14/2014 - 1:49pm
Replies by: Brendan, Rod, sofistef, Tina D, BrianP


I received the results of the ACTH test today and was told that I am adrenal insufficent, I'm stage 4 on Ippi/ Nivo/ IPPI+NIVO trail, I don't know what medicine I'm getting. First two sets of scans showed stable in the only confirmed melanoma spot and nothing new. The MRI I had a month ago, when they suspected adrenal insuficiency showed no pituitary inflamation.Also the Dr told me that I will start some thyroid med as well.

I'm still no feeling great, and this makes me nervous abut the next scans due in a couple of weeks.

Did anybody experience this? Was this a sign that the treatment is working? Is this a permenent condition?




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rgrand's picture
Replies 3
Last reply 5/14/2014 - 11:05am

On Thursday I will have the melanoma removed from my foot and a skin graft. They will take the skin from a donor site on the side of my abdomen.

They will also be doing a SLNB at the same time.

The full thickness skin graft on the sole of my foot is about a 3" circular area.

Has anybody undergone something similar? How long does it take to heal from this and when do you think I will be able to drive and walk on the grafted skin?


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adriana cooper's picture
Replies 11
Last reply 5/16/2014 - 2:08am

May 2012, age 36, original mole removed from left forearm by GP incompletely excised at both the lateral and deep margins. Malignant Melanoma. Breslow depth at least 3mm, Clarks level at least IV, mitotic rate 4/mm2, Ulcerated. Referred to Seattle Cancer Care Alliance surgeon. WLE performed and SNB performed with pathology report indicating clear margins and negative for Melanoma on both nodes. Diagnosed at least T3bN0M0.

March 2014 discovered growing lump above original site at inside of elbow. GP removed lump thinking fatty tissue. Pathology returns as Malignant Melanoma. Back to SCCA surgeon. Full body PET/CT and brain MRI ordered. CT indicated 14 suspected melanoma spots in lungs (largest at 8mm with many 1-2mm) as well as 2 spots in liver that were undetermined. PET did not light up on these, Dr. indicated they wouldn't due to size. Brain clear. Due to the 8mm size Dr. referred to Thoracic Surgeon for lung biopsy which was performed May 7. VATS wedge resection of left lower lobe. Pathology positive for Malignant Melanoma 5mm in size. Referred to SCCA medical oncologist. Appt. next week.


What typical treatments at this point (as we keep in mind each person is unique)


Currently having nausea, lack of energy. Hot and cold chills.

Could the cancer at this stage cause these symptoms or are they more likely a result of the lung surgery and recovery?

Posted by Mr. Adriana


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Mavbus's picture
Replies 3
Last reply 5/14/2014 - 8:51pm
Replies by: Ginger8888, Lil0909

My name is Donette. I had my first interferon treatment yesterday afternoon.  I started vomiting about 2 hrs after the treatment. For about 3 hrs. I hope and pray today's treatment is better.  I did call the dr and got on anti nausea med. Took one about an hr into getting sick. Wondering if it'll help if I do it sooner. 

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kpcollins31's picture
Replies 5
Last reply 5/14/2014 - 3:24pm

Just curious how many of you seek "pre-approval" of certain procedures through your health insurance carriers. I have good insurance so I never really thought about it - if a doctor tells me to have a CT or a PET scan, I just do it. Same with surgery. My thought has always been that I will not let some bureaucrat dictate what treatments I should or should not have as that is a choice for me and my doctor. If the insurance denies something, I can deal with it afterwards. For example, they recently deemed general anesthesia and an epidural as "not medically necessary" for open abdominal surgery which I thought was kind of funny... we got that fixed.

I ask the general question because my PET scan is coming up next week and I received the letter from the hospital stating that I should ensure that I am preapproved by my insurance prior to showing up for the appointment.



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Anonymous's picture
Replies 3
Last reply 5/14/2014 - 12:54am
Replies by: kylez, Anonymous

Has anyone with brain mets had issues with falling off to sleep amd then kerning away. I have had this the last couple of nights and am now panicking that the vem is no longer working?


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arthurjedi007's picture
Replies 3
Last reply 5/14/2014 - 7:45am
Replies by: Anonymous, Fen

Dunno if anyone is interested but the MK-3475 EAP at the Rochester Mayo took exactly a week for them to file all the papers. Then apparently they are having to wait about a week but they are not sure yet for the medicine to arrive. I assume that is only for new patients. So far so good.

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ray39's picture
Replies 5
Last reply 5/16/2014 - 1:21pm
Replies by: ray39, Anonymous, Janner

A compound dyspolastic melanocytic nevus with severe atypia, however an early melanoma (0.4 mm in depth) cannot be excluded in these sections. 

So I had a wide excision done yesterday.  The doctor said no pigmentation was left and that the entire growth had already been removed.  Is there a chance this could come back with a different result?

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