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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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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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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llmercll's picture
Replies 16
Last reply 5/14/2014 - 4:31pm

I've had a fairly large mole on my back for as long as I could remember, I've never really given it a good look until recently however. Over the past year I've spent a great deal of time in bed on the computer, lying on my back, and one day I noticed my mole was "stinging". I checked it out in the mirror and noticed there was a black spot on the mole, taking up maybe 20% of it. I figured I'd watch it and see how it does before going to a doctor. 

It's been 3 months and I don't think it's grown much, if any, at least not in width. It has a very "mole" like feel to it, and I can move it around a lot with my finger, I don't find it particularly odd except for that black spot. It doesn't sting anymore. If it grew at all over the past 3 months it might have gotten a bit "puffier". Unfortunately melanoma is often multicolored, and thats exactly what the problem is. And nodular melanoma grows in depth, not width, so that scares me too =( 

I tried making a dermatologist appointment but my medicaid requires me to get a referral, and I don't have a primary care doctor. I probably won't get to a dermatologist for another week or two because of this. I know it's critical to get early treatment of melanoma, so this is upsetting me greatly. I'm getting really anxious thinking about cancer, and would like someone to just take a look at at a picture of the mole and let me know what they think. 

Also if anyone knows a way for me to get a referral I'd really appreciate that too. 

thanks so much to whoever helps out, I'm hoping for someone knowledgeable to come along and ease my nerves, haha

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Anonymous's picture
Replies 1
Last reply 5/14/2014 - 5:34pm
Replies by: Anonymous

I am a stage 4 mm patient and currently on vem. I have mets in several places including my brain and wondered whether the location of mets made any difference as to whether you will become a complete or partial responder x

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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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Dave from Ormond's picture
Replies 5
Last reply 5/15/2014 - 12:04am

On November 22, 2013 I received my last dose of Yervoy/Ipi.  My December CT Scan showed no new growths and shrinkage of existing in the area that received radiation.

On February 12, 2014 I had a follow up scan that showed new mets in both my lungs, liver, stomach, and spine.  The largest were in my lungs at 10 mm.  The others were between 6 and 8 mm. A follow up Brain MRI showed 4 small spots in my brain.  We did 15 whole brain radiation treatments to treat this area prior to starting the B-raf/MEK treatments.

To achieve a baseline of where my mets where at in size and location, we did a PET Scan on Monday, April 7, 2014, which is the day I started the B-raf/MEK treatment.  The results of this scan showed NO METS in my LUNGS, LIVER, Stomach, or BRAIN.  I did have 5 new mets pop up but only ONE of two on my spine was there in both the CT Scan and the PET Scan.

My question to everyone is this:  Is it more likely to be a scan error or a Yervoy success?  

I'm interested in hearing others opinions as my Doctor would not commit to either and said that it is very possible that Yervoy did cure it, but there is also a chance that the PET Scan didn't pick them up because they are small.  He is counting on the CT scan that will determine if the braf/mek is working after 8 weeks to put any debate to rest.

Thanks for your input.


The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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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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MattF's picture
Replies 3
Last reply 5/15/2014 - 2:41pm

Ok need some

Stagfe IV as of NOV 2013....spots on bones...pituitary...and 2 free floating in my neck..

Combo shrank neck and cleared body even some bones....

Now latest pet/ct last week showed increase in activity in left femur, left pubic bone and L2 Vert.

Melanoma Onc at UCLA still supports the combo for now and wants to

A. Consult Radiation onc for spot radiation of 3 stubborn bone lesions while I stay on Braf Comb


B.Start injections of Xgeva monthly.

C. Scan in 60 days


So thoughts on a few stubborn mets while on the BRAF combo or even Zelboraf?

Thoughts on the radiation?

Thoughts on Combo still effective? etc...

My doctor knows the disease and while he was a little concerned he certainly was still light and positive about the course of action. I have some pain in left leg an back but not bad.

thanks for listening


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heg50heg's picture
Replies 18
Last reply 5/15/2014 - 6:20pm

Leaning toword doing this treatment, instead of the wait and see aproach,as that does not make me feel like I am doing anything. Pros and cons or past experinces for or against this treatment greatly apprciated.

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starletwoman2007's picture
Replies 2
Last reply 5/15/2014 - 9:24pm
Replies by: Brendan, Anonymous

Hi I have been hearing all the good things about Pd1 but wondered whether any patients have found it successful and how they have found it x

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Anonymous's picture
Replies 6
Last reply 5/16/2014 - 1:02am
Replies by: Jme, buffcody, POW, Anonymous

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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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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Anonymous's picture
Replies 15
Last reply 5/16/2014 - 11:11am

How long did you have to wait for your SNB after your melanoma diagnosis? 

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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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