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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arthurjedi007's picture
Replies 6
Last reply 9/8/2015 - 3:30pm

Like all this stuff it doesn't work for everybody. But apparently if some mutation they call sage3 is inhibiting your pd1 or other treatment from working this might help. Of course you have to have that mutation and the oil has to be of a type that inhibits that mutation which apparently the brand of frankensense they tested does. They didn't say what brand but thought they all have it.

Just rub it on any tumor you have that is close to the surface or on the surface. Even the kidneys if you have tumors there like me. Do not drink it just rub it on. Might not work but it can't hurt.

There is also a trial coming up for sage3 systemically but hasn't started yet.

Im not usually one to promote natural remedies although I believe in them I'm just too cautious and not smart enough to know the real from the fake. But when the doc explained it I figured I should share and maybe it will help someone. I got mine ordered and hopefully it will arrive at the hotel Monday.


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Anonymous's picture
Replies 1
Last reply 9/8/2015 - 3:17pm
Replies by: CHD

Hi everyone,

I came back from holiday about a month ago and notice a light brown patch on my foot - it didn't look bad or anything, but after I started Googling stuff melanoma came up as a possibility. I went to my doctor and he thought it was nothing, he said come back in two weeks if it hasnt gone. 

Sure enough, it hadn't disappeared. I went back to him, he looked through a hand microscrope with a large light and said he wasn't sure what it was and has referred me to a dermotoligst, who I'll be seeing soon.

However, I'm just really, really worried! I started googling things (which I know was stupid but I get nervous) and I'm just scared...

The spot went from a light brown to a darker brown, and now it looks like its fading a little bit. Could this be something else? 


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michaelinsocal's picture
Replies 6
Last reply 9/8/2015 - 3:02pm
Replies by: DZnDef, michaelinsocal, Patina, khubes, Julie in SoCal, Anonymous

Diagnosed at the end of '13. Spindle Cell Melanoma on left ankle, staged (and current) 3A. 

Im getting my second set of scans (CT/MRI) next week and want a specialist to review them and the course of treatment that I've undertaken. 

I live out in the lower Southern California desert (Palm Springs area). Can anyone recommend a melanoma specialist with excellent reviews, preferably within a 1-2 hour drive from here? 

Many thanks in advance.


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akamo's picture
Replies 4
Last reply 9/8/2015 - 2:51pm
Replies by: DZnDef, ET-SF, Anonymous, Colleen66

Hi. I am wondering what others thought about drugs that suppress the immune system? My husband has psoriatic arthritis (and psoriasis) and was put on low dose prednisone because he was in so much pain that he couldn't function in everyday life. Within about 4 months of starting the prednisone he developed melanoma. He has since went off of it because we thought it would slow his recovery (stage 1A with a WLE). As of now, he is back to being in excruciating pain. Is there anyone in this group who has arthritis and takes prednisone or methotrexate? I have read that they both can cause melanoma so imagine he would have a greater chance to get it again. Thoughts? Thanks-Robin

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jjd583's picture
Replies 9
Last reply 9/8/2015 - 11:30am



I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great


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Anonymous's picture
Replies 12
Last reply 9/8/2015 - 9:37am
Replies by: ET-SF, _Paul_, Anonymous, Ed Williams, katie1

ET seems to be (haven't yet confirmed the exact appointment) lined up with the melanoma center at Inova Fairfax.  They are participating in a Phase III trial of seviprotimut-L (POL-103a) at that center, and ET would qualify for the study, being NED, surgically resected stage IIb.  ET also qualifies for a couple of other vaccine trials.  There are no other trials at this time for which she qualifies, given her stage.  We are trying to figure out which vaccine trial would be most promising for her to undergo.

Option 1:  Phase III seviprotimut-L trial at Inova (NCT01546571):  This vaccine, manufactured by Hong Kong-based Polynoma, was first developed in the mid 80's and has a very small body of research behind it throughout the years.  From what I'm reading, it seems to be somewhat successful at mopping up free melanoma cells in the circulatory system and especially reducing serum CYT-MAA (cytoplasmic melanoma-associated antigen).  Perhaps the CYT-MAA effect is from a reduction of tumor load and therefore shed antigens?  Although the vaccine doesn't work on everyone, it works on some, somewhat extending the duration of recurrence-free survival.  The problem with this Phase III study is that the experimental design uses a placebo control group.  I don't yet know whether they use unequal sample sizes for the experimental vs. control groups.  (Some studies will greatly diminish the size of the control group for ethical/compassionate reasons.)

Option 2: Phase I trial of GVAX, Lipson, Johns Hopkins (NCT01435499):  Compares GVAX of two strains, combining one strain with cyclophosphamide.  GVAX vaccine, developed 1993, manufactured by BioSante Pharmaceuticals, consists of whole tumor cells that have been genetically modified to secrete GM-CSF (granulocyte-macrophage colony stimulating factor).  These whole cells are first irradiated to prevent cell division.  If I understand correctly, the strategy is to use the GM-CSF to stimulate macrophages to engulf them, digest them, and express their component antigens.  I am finding no data so far as to any measure of efficacy, other than immunological findings.  But then again, I suppose that's why it's still in Phase I testing.  Lipson is trying to determine how well the drug is tolerated

Option 3: Phase II trial of CDX-1401 and poly-ICLC, with or without CDX-301, Hanks, Duke (NCT02129075).  I don't know whether this trial is still in progress, as I don't see it listed on the Duke website.  These vaccines are manufactured by Celldex.  CDX-1401 is a MAB specific to the DEC-205 antigen on dendritic cells, activating these cells against the NY-ESO-1 tumor antigen.  (I have no idea whether ET's tumor expresses this antigen.  Could this be tested?)  CDX-301 stimulates production of dendritic cells.  Poly-ICLC (mfgr, Oncovir) is a viral mimic that acts as an immunostimulant.

Any thoughts as to which of these three choices might hold the most promise for ET at her stage IIb?  Note: We have no insurance coverage that would help us with options 2 or 3.  I don't know what sorts of costs would not be covered by the research grant.  Only option 1 is conducted by physicians and a melanoma center covered under our insurance.

Thanks for any thoughts on these vaccine trials!  We continue to be hard at work learning all this stuff!  There's sooooo much to learn!


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Rita and Charles's picture
Replies 5
Last reply 9/7/2015 - 7:24pm
Replies by: Anonymous, Wheels1994, Rita and Charles, mrsaxde

I think that I must be crazy asking this question...I'm super straight, but my husband has chronic pain  from broken back, leg, etc - struffling for yearsm and it seems like the BRAF combo had amplified it.  He can no longer walk our dog and we are so happy that the combo is shrinking the tumors but life is still filled with pain. 




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Lisa - Aust's picture
Replies 8
Last reply 9/7/2015 - 5:33am

Hello Everyone, 

Just wondering what kind of side effects those who have stopped PD1 have experienced. 

My husband has been off treatment for a couple of months (after being on for around 1.5 years) and is experiencing 'tingling' of feet, hands and face - he describes it almost like his body is vibrating at times. While on treatment he also developed tinnitus, but the Drs and specialists are saying it's not related to the drug. Just curious if anyone has experienced similar sensations. He's just been checked out scan wise, and is all clear. 



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davidstewart's picture
Replies 12
Last reply 9/6/2015 - 2:04pm

Hi everyone!

I'm new to the forum. Really glad this resource is available. I caught a stage 4 melanoma diagnosis this Monday. We met with Dr. Stergios Moscos today at UNC Chapel Hill--very nice, informed melanoma specialist. He suggested a treatment plan but was supportive of our desire to get a second opinion.He offered six suggestions. I'd be grateful for any input that could help us decide about which choice to make for deciding about how to proceed.

Dr. Stephen Hodie at Dana Farber

Dr. Keith Flaherty at Mass General

Dr. Jedd Wolchok at Sloan Kettering

Dr. Jeffery Weber at Moffit

Dr. John Kirkwood (his mentor) at Pitt

Dr. Suzanne Topalian at Johns Hopkins.

We had been advised to seek out clinical trials as that is state of the art but Dr. Moscos took the view that some of the conventional treatments should be tried first.

Anybody out there have suggestions?



David Stewart




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Anonymous's picture
Replies 13
Last reply 9/6/2015 - 11:38am
Replies by: jpg, Bubbles, kylez, ET-SF, Ed Williams, Anonymous
jonathanmole's picture
Replies 3
Last reply 9/5/2015 - 10:21pm
Replies by: Mugglemum, stars, Kim K

Hi! I just found this mole on my left leg, I was startled to see black dots in the mole itself and scheduled a meeting with a dermatologist, but sadly it's gonna be at least 3 weeks til I see him. I am so worried about what this might be. I just want to get some feedback on what to expect and what you might think this is. Thank you.

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MonicaD's picture
Replies 51
Last reply 9/5/2015 - 8:57pm

Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood work came back fine.  My lung x-ray came back clear.  I read a copy of my histology report and comparing it to what I've read online, I think at best I'll be Stage IIb since my mole was ulcerated but I have to wait for my node biopsy results to know if it's even a worse stage than that.  What I've found hard in my online searches is that there's really not much out there as testimonials of people who have gone through this journey with melanoma and survived.  I find myself yearning to hear people's stories but I'm having a hard time finding any which I find scary.  So, my question is, have you gone through this and how are you now?  I just want to hear that this can be beaten, even if only beaten a little at a time each time it's beaten.  I know if I survive that this disease is about being diligent and watching your moles, etc., and I know recurrences can and likely will happen, but still... can I beat it?  Have you beaten it?  I just want to hear something positive.  Nobody will tell me anything positive and I'm finding that that is just feeding into the fear that already exists inside of me.  I'm trying to stay positive and mostly I think I'm doing a good job of it but I admit I need help with it sometimes.  I don't need someone to tell me it's all going to be ok because I know there's a chance it won't be but I just want some positive stories I can store in my mind so that when I do feel scared I will have a tool to beat down the negative thoughts and keep hope alive within me.  Thanks. 

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PamelaA's picture
Replies 7
Last reply 9/5/2015 - 6:54pm

I am currently getting Keytruda every 3 weeks. My family knows that I have stage 3c Cancer, they know I am now taking chemo and they know I am in a lot of pain from past surgeries but they still make me feel like I should be attending everything I am invited to, regardless of how I am feeling. Today my whole family went to a birthday party for my cousin, and I stayed home. I'm upset because I feel like am missing memories and because it gets held against me but bottom line, I don't have any energy!


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Skywalker's picture
Replies 4
Last reply 9/5/2015 - 1:39pm
Replies by: michaelinsocal, kylez, MattF

I was diagnosed with MIS on the center of my nose and after my initial shock thought this would be straightforward: excision with some reconstruction. 

It turns out that an melanoma excision on the nose is challenging: Excision requires experience with the proper technique that not every dermatologist has and many plastic surgeons don't want to do any melanoma related reconstruction. 

I've figured out by now from multiple consults that I would need someone who's specialized in using Mohs for Melanoma, which is rare. Moh's surgery is used typically for other skin cancers, not melanoma. The type of Moh's is controversial too, with or without histochemical stain, etc. 

I need recommendations for a Moh's trained surgeon who is highly experienced in applying the technique for Melanoma; plus a plastic surgeon, plus a good oncologist - I actually have by now 3 primary cancers: breast, SCC, and melanoma and am told that that is not a good thing. Any recommendations are much appreciated. 



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SunshineMomof5's picture
Replies 12
Last reply 9/4/2015 - 11:21am

Hi, everyone!  I'm new here.  My husband has Stage 3C metastatic melanoma and just finished his 4 week course of 5 days a week IV interferon treatments.  Now we're on the 3 a week injections.

He's down to 126 pounds.  He's 6'1".  The nausea has been bad, but so has the metallic taste in his mouth which makes everything he eats taste horrible and creates more nausea.

Any tips or tricks from those who have travelled this road before us?

Thanks in advance!

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