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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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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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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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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DZnDef's picture
Replies 2
Last reply 10/28/2015 - 3:05am
Replies by: DZnDef, stars

I watched the whole series and found there is definitely some worthwhile information here.  All 9 episodes are now available to watch until midnight Sunday EST for free.  No need to provide your email address.  The only thing they're selling is the series itself.  It is eye-opening and thought-provoking.  I would encourage folks to watch Episode 9 - survivor stories.  Also, Episode 3 had a section on Melanoma and the Rigvir therapy in Latvia.

These episodes are geared towards those that are curious about natural and alternative treatments for cancer, either on their own or combined with conventional treatments.

Again, no need to provide your email address (so no pesky mailing lists).  Just watch the episodes that interest you until midnight Sunday.  See what they have to say and make up your own mind.



Maggie - Stage IV (lung mets unknown primary) since July 2012

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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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Angsta39's picture
Replies 7
Last reply 10/28/2015 - 1:14pm

I was diagnosed with Stage IIIB after two surgeries to remove the intial cancer from my leg, a sentinal lymph node biopsy, and having the rest of my lymph nodes removed from my right groin. When I went to see my Medical Oncologist, she offered me three treatments. Interferon, Peg, or Biochemo or just to watch and wait. She explained that none of the treatments she offered would change the 60% chance of the mel coming back within 5 years, so I decided to just watch and wait instead of dealing with the side effects she told me I may have from the treatments. I have tried to find data on each one of these treatments and if they really work or if I'm better off keeping to the watch and wait. I gave read threads where people have been NED for years from doing these treatments so it makes me question myself and my doctor. Could anyone who has been through these treatments please share your story with me so that I can be more educated on all of this. Thank you in advance for your help.  

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jas02r's picture
Replies 11
Last reply 11/2/2015 - 11:38pm

On August 15th my dad found out he had stage IV melanoma that started on his scalp as a small lesion that grew to about half the size of a gold ball. He also had major liver involvement, hip, thigh, rib and skull bone activity, he also had lymphnode involvement behind the small intestines and small nodules in both lungs. Fast forward to this past week where he endured several scans and a surgery to repair a ruptured ulcer we found out he also had several brain mets that were bleeding that had not been there on the MRI 3 months earlier.

The only treatment my dad was able to receive during his short battle was 2 rounds of Opdivo which caused server liver toxicity so his oncologist had to end treatment. The next option was the BRAF combo but he had tested positive for V600R gene and caremark initially denied the meds but with the help of Dr Sosman and his regular oncologist they finally agreed last Friday to approve them for him but unfortunately it was too late. His body was just too weak for anymore treatment, he hadn't eaten or drank much at all in ten days and the brain mets had bled causing him to lose his speech for a day until the meds were able to shrink the swelling of his brain. His speech returned which we were so grateful for so we could communicate in his last days but it was clear the end was near.

We started palliative care yesterday around 9am and my dear dad passed at 1:48 pm Oct, 22 2015. He fought hard but just couldn't win this battle. I now know more about melanoma than I care to and wanted to thank everyone on this form for all the hope, inspiration and info you've provided over the past several months. My hopes prayers are with each of you fighting this nasty disease.

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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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sweatergirl's picture
Replies 4
Last reply 11/1/2015 - 12:48pm

My hubby, age 55 with fair skin and numerous moles, went to the doctor for an unrelated matter when she noticed a mole the size of a pencil eraser on his left abdomen.  It appeared black; no uneven edges and not raised.  She used her special light on it and, because she found it to have "numerous colors," she referred him to a dermatologist on an emergent basis.

Two days later he was at the dermo's office and the dermo found another worrisome mole, on his right shoulder.  Both moles were biopsied.  From the path report, it appears that they were shave biopsies.

The diagnosis are as follows:

a: Skin, left abdomen, biopsy:

Compound melanocytic nevus, Clark's/dysplastic type, moderate to severely atypical, focally present at the peripheral margin, see comment.

b: Skin, right shoulder, biopsy:

Irritated compound melanocytic nevus, congenital pattern, see comment.


A.  Definite full transformation into melanoma is not interpreted.  Nonetheless, there is moderate to severe architectural disorder and cytological atypia and consequentely full removal of any residual lesion is recommended. (scheduled for 11/4/15).

B.  There is slight architectural disorder but no significant cytological atypia and the overall findingas appear benign.

Specimen Submitted:

A:  Left Abdomen: Received in farmalin labeled with the pt's name and "left abdomen" is a light tan skin shave with a central pigmentation.  The skin measures  0.8 cm x .7 cm.  The pigmented region is 0.5 x 0.4 cm located less than than 0.1 cm from the nearest resection margin.  The deep aspect is granular light tan.  The resection margins are inked blue.  The specimen is sectioned and entirely submitted in A1.

B.  N/A since it appears benign.

Unknown as to how long this particular mole was there, as hubby has so many.  From my research (thank you so much for this website--what a GIFT!), this was likely caught early enough so as to NOT be cancerous, but.........

My question to the group is how likely is this to be melanoma?  Hubby's parents have both had basal cell carcinoma and squamous cell carcinoma, but no family hx of melanoma.

It would have been better if the dermo had initially done a punch biopsy v. shave, correct?  When she does the removal with two layers of sutures (as her medical assistant described), will it likely be the MOHS surgery or an excisional (like a lumpectomy, for a lack of better terms)?

We will do full body photographs of moles, after this treatment, for comparisons.

Thank you so much for reading my post and the feedback.


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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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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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Anonymous's picture
Replies 2
Last reply 10/22/2015 - 6:19pm
Replies by: Bearsworth, Linny

I'm undergoing a complete lymph node dissection in a few weeks at MDA to determine if I am a Stage 3b or 3c after having a lymph node removed last month that came back with mel.  My brain and PetScan are clean.  Anybody have experience with the doctors at MDA for Stage 3b or c post-surgery treatment?  Recommendations?  We are from our of state, but are somewhat flexible on flying to Houston for treatment if substantially beneficial.  

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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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