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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BrianP's picture
Replies 6
Last reply 10/26/2015 - 6:15pm
Replies by: BrianP, kpcollins31

Can anyone recommend a good melanoma surgeon.  My surgeon left Duke for a position in Texas.  I'm located in North Carolina and would like to stay in the Mid Atlantic area if possible.  The operation will probably be fairly complex to remove two tumors near my liver.  Thanks for any suggestions.


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mrsaxde's picture
Replies 6
Last reply 10/26/2015 - 12:44pm
Replies by: arthurjedi007, Gene_S, Sarahrenahan, Anonymous, mrsaxde

I walked into the bedroom this morning to find my wife watching one of those web ads about acetogenins. Since being diagnosed with melanoma in 2013 I have looked at alternative treatments to supplement the treatments the doctor has prescribed. I've tried Tagamet and mushroom extract in addition to Yervoy, and now Keytruda, with the blessings of my doctor. Both of those substances have been found to be of benefit for at least some melanoma patients.

Now I have a healthy dose of skepticism about these things on the internet, but I grabbed my laptop and googled "acetogenin." I was amazed to find that there are at least several scholarly papers that have found that acetogenins have anti-tumor properties. They apparently work on a cellular pathway that starves tumor cells of nutrients, or something to that effect.

In the months I've been hanging around this message board, I have never heard anyone else mention them. Apparently the primary source for acetogenins is Pawpaw extract. Has anybody tried them, have any experience with them, know anything about them? Like I said, I'll try anything that could possibly work as long as my doctor ok's it. And I intend to ask her about acetogenins when I see her a week from Monday.


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emagdnim83's picture
Replies 4
Last reply 10/26/2015 - 8:37am

My father is currently in the hospital, pallative station, because he has multiple (bleeding) brain mets. He can speak but forgets much, can't remember some names and is generally very confused (doesn't know what some everyday items are for and so on). sometimes it is a bit better but he isn't able to walk and is now bedridden and needs Nursing.

Oncologist said we could do a WBR but doesn't think that it would help him and would just be a additionally burden for him. It would give him a bit of time but he is sure that it would not be enough time to get his nivolumab treatment to work (he received just one dose 3 weeks ago). Furthermore the damages his brain already got due to the bleeding brain mets would stay like this and not get any better (is this true?). 

So we decided to not do a WBR and organize a pallative care for him at home. Oncologist says he has maybe 1 to 4 weeks left and we would like to have him home.

In the end, i am still battling with our decision, i am always thinking of maybe the WBR would give him time to benefit from nivolumab? May be he would be one of the few where it starts to work even after the second treatment? Oncologist said that even with WBR he maybe would die because of his lung mets which have "exploded" since he stopped Zelboraf. He has mets in liver, pankreas and spine, too.

I'm lost and thankful for every advice i can get. Thank you.

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Millykamp's picture
Replies 5
Last reply 10/25/2015 - 5:11pm

Hello everyone 


I had an CLND done a few days ago and one of the, came back positive. Anyways I am dealing with numbing in my arm and muscle spasm.... Is this always common? 


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scottr's picture
Replies 9
Last reply 10/25/2015 - 5:40am
Replies by: stars, Anonymous, geriakt, scottr, CHD, lmhl

Hi All!

I just recieved a diagnosis of Melanoma PT1A. Breslow .32, clark level 2, TIL -non brisk and the part that has me concerned was regression. Pathology report said regression present - involving over 75% of lesion. I keep reading differing opinions on this but many seem to think this has a significantly worse prognosis.

I dont have a family doctor just went to local med clinic. I was referred to a oncologist and am waiting to meet on Nov 12 in Ottawa canada.

So far a little dissapointed with care in that I presented on Sept 26th. So far I have not had any doctors perform a skin evaluation or perform lymph node palpation. I noticed a week ago that I have a small lump in my neck. My wife checked also and agreed that she felt something too.

Kinda just sitting here and sweating it out. I hate being paranoid and I know path report was pretty good except the regression aspect.

Any advice?


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gaby's picture
Replies 2
Last reply 10/24/2015 - 5:18pm
Replies by: mrsaxde, Fen

Hello, I can not stop reading this forum. You were my company in the most difficult times

Next week will be met one year since my husband ended two years of pegylated interferon. He ended the pegylated interferon  on 29 October  2014. He is stage 3a, thank God he's fine. He also is a survivor of kidney cancer at the same time that melanoma.

In December He will be control SCAN, I hope that SCAN will be clean.

Now we are fighting to  become parents.



Thank God for hearing my prayers.

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AnitaLoree's picture
Replies 5
Last reply 10/24/2015 - 5:05pm

My husband will switch to Yervoy 3 mg/kg with concurrent Opdivo 1 mg/kg X 4 sessions then scheduled to con't on Opdivo 1 mg every 3 wks.  Have looked back on posts by folks on this 4 X combo to see what to expect in increased SE's so can be prepared.  He's only experienced itchy rash and fatigue with Keytruda but see there's likely to be more with Yervoy.  Will post his experience with combo if it will help others.  Caveat: my husband is an older gentleman, 78 years young, so I have also been quite interested in all the posts about how seniors are tolerating the various treatment regimens.  He was in top physical shape going into this 2 yrs ago so I know that's helped him cope but, still, aging does take away some resiliency. 

Also, to anyone doing this combo, are these the dosages you are/were also getting/got?  thx for any info.


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JoshF's picture
Replies 10
Last reply 10/24/2015 - 1:38pm
Replies by: Swanee, JoshF, Anonymous, SABKLYN, Bubbles, stars, AnitaLoree

Good Morning!!! I found a tiny lump in my armpit the other day and it didn;t seem deep. I talked with my onc and she suggested going to derm, which I did this morning. He flet it, didn;t seem concerned as it was superficial and did a 6mm punch and dug it out. Of course I'm on edge and sked if it's a node. He said nodes in armpit aren't usually superficial and he felt if it was, he wouldn;t remove it and refer me to surgeon. He wanted to take out due to my history and give peace of mind. Well now waiting game which brings out all kinds of anxiety and thoughts running through my head. Anyone have similiar experience or have anyhing they can add in terms of superficial lumps...cyst, lipoma etc.... I'm grateful that I've been fortunate given my experiences with melanoma, I always know it could be worse but that's the thing with this crap....I tend to expect worst. Life of a cancer patient.....



Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 4
Last reply 10/24/2015 - 11:01am

I have asked a few doctors and so far havent gotten any advice. My husband started Keytruda and will be on it for "as long as it works." There is zero information available as to whether it will affect having a child. Is it even something to worry about?

I know this is a tough question. All I'm looking for is some advice.


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dfeng's picture
Replies 50
Last reply 10/24/2015 - 9:33am

Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.


In my case, average one year left. Let's see how long I can make it. 


Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.


Had four treatments Kemo 17 years ago, I think I am ready for any side effect.

D. Feng

My record of progress on the first ipi/nivo trial is here:

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stuartw's picture
Replies 1
Last reply 10/24/2015 - 9:21am
Replies by: geriakt

I had a 1.3mm melanoma removed from my back along with 2 sentinel lymph node biopsies (August 2015). After two labs reviewed the results of the biopsy they found scattered positive cells in one lymph node and wrote "micro-metastatic melanoma as a single cell cannot be ruled out."


They said the this has to be considered Stage IIIa but they would NOT recommend chemotherapy or radiation therapy and probably not even immunotherapy except on a clinical trial. I got a Pet scan to be used as a comparison for the series of cat scans I will be getting over the next 3 years (every six months) and then annually. 

I need to talk to anyone who is in the same situation cause I am scared and freaking out and feel completely alone. 


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Eileensulliv's picture
Replies 7
Last reply 10/24/2015 - 1:03am

I was diagnosed in January, in transit met in my back was removed in February. Mets in my lungs, bowel, and lymph nodes being treated with the ipi/nivo combo trial in March. I was only able to tolerate one dose of the two meds, and once my thyroid was normalized and I was weened off prednisone, treatments of just nivo resumed. CT scan in June showed shrinkage of just about everything, and scan in August only mentioned the mesenteric lymph node! CT scan last week shows the lung mets again, as well as the mesenteric nodes. The lung mets are unchanged in size from June, but are less conspicuous. Mesenteric nodes are unchanged. I questioned why the August scan report made no mention of the lung nodules, and I was told it's because the wrong scan was ordered, so the lungs weren't scanned. But apparently they scanned enough that the bottom of the lungs are in the scan, and the nodules are so small the radiologist didn't even see them. That answer just doesn't sit well with me, but I'm focusing on that unchanged means stable, and overall, I have a very good scan report!

The biggest problem I've been having is that I have pretty bad reactions to the CT contrast, sometimes landing me in the hospital. We thought at first that it was a combination of the contrast and the nivo, since I was doing scans on the same day as treatments. But for the scan last week we decided to do it on the opposite week of my treatment, to see if I could tolerate just the ct contrast. It turns out I couldn't, so now we will have to make a decision on how to scan me from now on. The option we seem to be leaning towards is premedicating me with prednisone 24, 12, and 2 hours before my next scan. 

With every adverse reaction came a delay in treatments. I just had my first treatment in a month (car broke down on my way to treatment two weeks ago) and I can't stop itching! I'm itching on most of my body, but especially my hands, arms, and torso. Has anybody experienced this, and if so, what worked for you? Thank you!!!


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Anonymous's picture
Replies 1
Last reply 10/23/2015 - 4:22pm
Replies by: Anonymous
Amgen wins EU green light for first virus-based cancer drug

A first-in-class drug from Amgen based on a tumour-killing virus was given a green light by European regulators on Friday, paving the way for its approval within a couple of months.

The decision is a further milestone for a technology that has long fascinated scientists but has previously proved difficult to harness.

The European Medicines Agency (EMA) said its experts had recommended approval of Imlygic, also known as talimogene laherparepvec or "T-Vec", for treating melanoma, making it another option among several new drugs for the most deadly form of skin cancer.

“Viral immunotherapy represents a completely new way of treating cancer, so it’s extremely exciting to see T-Vec become the first treatment of this type to gain the green light from European regulators," said Paul Workman, Chief Executive of The Institute of Cancer Research, London.

The drug is recommended for treating melanoma that cannot be removed by surgery and has spread without affecting internal organs.

Imlygic uses a herpes simplex virus, the type that causes cold sores, which has been modified to only infect cancer cells. It is injected directly into tumours where it replicates and causes cancer cells to rupture and die, also stimulating a system-wide immune response.

Until three years ago, chemotherapy was the only available treatment for patients whose melanoma had spread. But recently there have been a number of new treatments, including immunotherapies, BRAF V600 inhibitors and MEK inhibitors.

Despite this progress, the EMA said there was still a need for new treatments with acceptable safety profiles to continue to improve the outlook for patients.

Amgen said melanoma remained one of the most difficult-to-treat cancers, often requiring the use of multiple treatments.

In clinical tests, Imlygic has shrunk tumours but it has not yet been shown to extend lives.

"Exploratory analysis in these patients suggested improvements in survival in patients treated with Imlygic, however this is not yet fully clear," the EMA said. "Imlygic has also not been compared with other recently approved medicines for melanoma, which have shown beneficial effects on survival."

Amgen's product was recommended by an advisory panel to the U.S. Food and Drug Administration in April and the U.S. agency is due to give its verdict on whether to approve the medicine by Oct. 27.

Amgen secured rights to Imlygic after buying BioVex for up to $1 billion in 2011, marking a notable bet on so-called oncolytic virus technology in the wake of earlier disappointments. Onyx Pharmaceuticals had a big setback in the field in 2003 with a product called ONYX-015, a modified common cold virus.

Other companies working on cancer-fighting viruses include Oncolytics Biotech, SillaJen, Targovax and Genelux.


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Birdlo's picture
Replies 2
Last reply 10/23/2015 - 4:20pm
Replies by: Birdlo, arthurjedi007

Is there anyone out there that has particiapated in the polynoma / polyvalent vaccine? It's a vaccine trial offered at Hunstman Cancer in Utah (and perhaps elsewhere?, that is not clear to me), and I'm just trying to learn more about it. 

I'm a little confused about the whole clincal trial thing. The only one that has been mentioned to me by my surgeon is the polyvalent one i mention above. Are you restricted to whichever trial your particular hospital is offering? Surely some trials are more promising than others...or are they?...and how do you know which ones, and if you find out about one out there, do you have to switch care to that hospital or can you do any trial no matter where you are? I guess I just don't get how it all works.

Again, if anyone knows anything about this polynoma/polyvalent vaccine, and certainly if you are a current participant, I would love to hear from you!

thanks to all...


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ToddC's picture
Replies 5
Last reply 10/23/2015 - 2:57pm
Replies by: DZnDef, ToddC, Gene_S, jamieth29

Hi Everybody, I haven't posted here in a long time. I was stage 4 mel with multiple tumors about 4-5 years back, mostly my tumors were dealt with by surgury or gamma ray. Originally I was diagnose as stage 4 way back in 2006.  I never received any real medicine such as interferon or yervoy although I tried to get into the original trials for ipilimumab back in 2010 but was rejected since I had the wrong genetic markers.  Anyway I just wanted to check in and let everybody know I'm still fine and have been NED for about 3 years now, my bloodwork is fantastic according to my Onc, blood sugars are down around 90 now in the morning from about 115 before, LD reading is low 30's now... before was over 70, lymphocyte are upto 25% wheras before was about 11-12%, vitamin D level is over 60 wheras before was about 18 (lol), PET scans have been clear since 2012 and my Onc recently told me we would cease these and only check bloodwork from now on. Frankly we are both amazed at my progress since most patients seem to have poor prognosis with Mel.

Before what? If you recall I was the vitamin D guy, I remember James Sennel from way back and followed his advice which seems  to have worked great for me.  I began using a vitamin D lamp (made by Sperti) about 3 months before my final episode with this stupid inflammatory condition called melanoma. I believe it was primarily responsible for getting rid of this problem, I used to take the vitamin pill form but the lamp really seemed to get my levels much higher. I think coupled with using the lamp, I stopped bathing the skin oils off using soap (only trunk arms and legs) from the areas I used this lamp on. Many people told me this would actually cause by skin cancer to grow like crazy since this is a UVB source lamp but it did not, in fact my dermatologist has not seen any new weird looking moles in at least 2 years now.

Why did I do this? One day I googled how vitamin D pills are manufactured, you should also do this. You will find that the substance called vitamin D is not really a vitamin at all but is mostly made in or on the skin by a particular wave length of light (UVB) causing a photochemical reaction which coverts the cholesterol in our sebum into a hormone precursor which is then reabsorbed back into the body and converted in the liver into what we call vitamin D along with a multitude of other endocrine hormones. Commercial vitamin D pill actually come from sheep sebum (lanolin) which is doused with UVB rays, sorry I know that is pretty disgusting but is enlightening as to the way this substance is supposed to be made by our bodies. I figured I was having some sort of problem absorbing this pill form which prompted me to try to make this substance naturally.

In addition to using this lamp to generate a lot of vitamin D, I cut out nearly all dairy products from my diet, I was trying to reduce or remove casein protein mainly since it is highly inflammatory and actually a very sticky substance which I think clogs up the lymphatic system. My theory is this improves immune responsiveness since the lymph system and cancer cells are more easily identified and eliminated. In addition to no dairy, I quit using fluoride toothpaste and started a mineral supplement. That was pretty much all I did aside from live a normal life, quit wearing sunscreen and get enough good nutrition and exercise.

I believe all of us have the ability to kick melanoma's butt and just wanted to encourage everybody with my story which is true, it is possible to beat this condition. Please consider the above advice, none of what I did will interefere with any of the meds or other stuff doctors want to do, this protocol is very inexpensive (aside from the lamp which is about $400) and makes you feel you are taking positive steps in your own recovery rather than feeling helpless or dependent on the doctors. Oh and about that whole sunscreen debate... you should be aware that wearing sunscreen prevents 98% of your natural vitamin D production.

Good Luck!!

Todd C

Los Angeles CA


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