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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JoshF's picture
Replies 6
Last reply 10/27/2015 - 11:08pm

My derm called and said intial tests showed lump isn't a cyst and something about lymphocytes being present and blue cells..sorry it was like Charlie Brown's teacher talking. I was upset with him because now it's being sent out for further testing. He said it still can be a number of things but I told him I've been down this road before and with my history, it should've been tested from the start for melanoma. He has "basic" path in his facility so when anything is suspect he sends out. Now I have to wait how many more days??? This derm has been great for 5 years; feel like ball was dropped here.

So I freaked out and emailed my oncologist to have scan moved up which she will not do because she can;t say it's melanoma and if it is pathology will dictate what she wants to do in regards to scan. She's great and I feel like a jerk because I get so worked up with her. I just can't help but second guess everything now....everytime I think I have this beat...

I appreciate everyone's support and responses over the years. This forum has been great to vent. Wishing you all nothing but the best.



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

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Anonymous's picture
Replies 2
Last reply 10/26/2015 - 6:33pm
Replies by: Anonymous

My sister was diagnosed with stage 1A melanoma, 0.6mm clark III (3) mitosis <1mm2, her primary was located in the middle of es left clavicle. She had the WLE last november 2014 but was not done the SLNB. Every day I keep thinking about a possible recurrence, my fear is latent each day, and continue reading and instructing myself about this terrible disease. Every day I check this forum in search of stories, stories like my sister. Many people have told me it's unlikely the melanoma has metastasized to lymph nodes or other parts of her body, that she is low risk. I have lately seen some stories that even with stage 1a or a thin melanoma, have been found melanoma cells on the lymph nodes or after few years have passed from stage 1 to stage 3 or 4.
I do not know what happen to me but every time my sister tells me that something hurts her or when she get sicks I always associate her sickness with melanoma.
What could be the symptoms of a recurrence, either a local or distant recurrence? How could I know if we are present of a recurrence?
Pardon my concern and I hope you can help me.
Thank you and I pray for you all, and hoping a final cure could be found very soon!!!!

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Bearsworth's picture
Replies 6
Last reply 10/27/2015 - 7:49pm

Just had scans done last week and they found a swollen lymph node. I have hade 2 WLE's on my back and lymph nodes removed in my left and right groin.  Had the deep ones removed in my right.  Experience shows that this is Melanoma as well but the biopsy hasn't been done yet.  It is scheduled for this week.  If this comes out as positive for Melanoma, we are looking to do IPI/NIVO treatment.  Obviously I am very nervous and am praying the biopsy is benign.  If anyone could help with some of these questions I have, I would appreciate it. 


1.  Will the meds affect my lymphadema in my legs?

2.  Will I have to get a port?

3.  What kind of side effects/symptoms should I expect?  ( I am a healthy 42 yr old other than Melanoma)

4.  How long after your first dose did you end up with side effects?

5.  Will I be able to function normally throughout the day with my job?  (Desk Job)

6.  Will exersize help or have adverse effects to the side effects? (Walking and light jogging)





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emagdnim83's picture
Replies 5
Last reply 10/27/2015 - 12:03pm

Hi everyone,

i've posted a few times about my fathers journey with metastatic amelanotic melanoma. A few Days ago i've posted about him here:

We didn't do WBR because our oncologist and the folks at the pallative station in our hospital told us he wouldn't benefit from it and it would just be a additional burden for him. He would have to stay two more weeks in the hospital for the radiation treatment and maybe just get a few weeks more to live. He has multiple mets, including one "big one", in the brain which have bled last weekend and started growing only 5 weeks ago (last CT Mid September didnt show any brain mets). He is in the hospital since last monday. First days were hard (could barely speak and concentrate, didn't remember much, bedridden, was very very confused, slept very much, did barely eat and drink, karnovsky 20%). His condition is now a lot better (maybe thanks to cortison and pain meds), he is able to have a conversation, does eat and drink very well (even beer and wine!), he even is able to walk some steps (with someone helping him a bit). Sometimes he is still confused and talks about strange things and his short-term memory is very bad. But all in all he is now in a suprisingly good condition. He will leave hospital tomorrow and we can bring him home.

He doesn't get any cancer treatment at the moment. His first and last Nivolumab-Infusion was 4 Weeks ago @ 3mg/kg. Our Oncologist says it will not help him anymore and since he has now multiple brain mets (plus mets nearly everywhere else) it wouldn't help fast enough if it would help with brain mets at all.  Plus, he thinks that the side effects (he was very short of breath after his first dose) would be a additional burden now.

Should i try to convince him to give him at least one more infusion with for example at least 1mg/kg to lower side effects? I really have a hard to just not do anything now. Another doctor who visited him in the hospital said he could have even "some months" left (if the mets don't decide to bleed again!) because his blood test results were pretty good and his general state has improved so much in the last few days... 

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triciad's picture
Replies 6
Last reply 10/26/2015 - 6:50pm

Does anyone know if Keytruda crosses the blood-brain barrier?  

Thanks for your help!


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triciad's picture
Replies 9
Last reply 10/27/2015 - 1:39pm

Dear Fellow Warriors,

I have been battling this disease for the past six years,  Originally diagnosed at Stage IIIB.  Did a year of interferon, radiation, leukine, and yervoy.  Last week's scans showed mets to spine, lungs, liver, and belly.  I used to come here daily to stay on top of treatments and be inspired by the warriors battling this disease.  Whenever I could, I gave some advice on treatments I had, but I really didn't have the experiece to chime in often.  Unfortunately, I have been out of touch for the past few years taking care of my aging parents.  Now, I'm just at a loss with my latest scans.  I would greatly appreciate any input you can offer.

I am a teacher, so I'm not sure what to do about school.  Do you think I should resign immediately?  I don't want to die during the year on my students.

I just had my first dose of Keytruda.  I'm wondering if anyone knows if this drug works on the kinds of mets I have.  Also, I have increasing pain in my back where the bone mets were seen.  Any ideas for pain management.  Does it intensify quickly?  At first, I just thought I pulled a muscle.

Thanks for any help you can offer.

God bless all of you for the battle you fight or help others fight daily!


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scmcelroy's picture
Replies 5
Last reply 11/2/2015 - 11:24pm

God is in the business of Miracles! Many may remember my post several months ago. I was diagnosed with melanoma skin cancer on my nostril of my nose. I had went for a skin screening and the Dr saw something that I honestly never could actually see. She did a biopsy and the thing she thought might be Basel cell was nothing more than fibroid tissue. However she said the biopsy showed Melanoma in-situ.  The Dr wanted to do MOHS surgery,but with Melanoma they would have to send the tissue off overnight and come back the next day (day after day) and have cells removed until it showed cleared margins. I asked if there was anywhere that could do it all in one day and they directed my to a University in NC. I went down there the first of September with intentions of having a consult and the go directly in surgery. That Dr traumatized me with his plan of action. At a minimum, he was going to take my left nostril off and have to remove cartilage from my ear to repair the lost of cartilage and then cut from my nose to the edge of my mouth to do what i found out to be a flap graft. His exact words to me was "I was going to have a "wiener" on the side of my face for a month until they did reconstructive surgery. (After research I found out that this would have been a flap that resembled the size of one of the small cocktail wieners.) Needless to say, I lost it at that point. I couldn't comprehend anything else he had to say. We left his office without having surgery. I have been an emotional wreck since then. I actually had been considering doing nothing, especially since I couldn't see it and it was in the very early stage. My thought process was it may never do anything why would I butcher myself up for this. I started to do a lot of research and blogging and could not find one single person who would agree with me. I scheduled an appointment with my family doctor and he referred me to UVA. I went last Friday for a consult and this dr assured me that he could do the surgery with minimum damage. My surgery was scheduled for this coming Monday, Oct 26 to remove the cancer and then go back a week later to repair the hole that was left. I think I was finally at peace with this decision. Today a very close friend of mine at work told me that he knew I was going to be alright. He had awoke early Saturday morning to a piece of mind that I would be fine. Awaking like this was something he never did. I knew God had spoke to him and it gave me even more peace about the surgery. Wouldn't you know it, 30 minutes after my conversation with my friend I received a phone call from a UVA dr stating that they had reviewed my previous biopsy report (which had been reviewed by 3 other pathologist elsewhere) and they did not see any Melanoma. He called it something else - some long name, but he definitely said it was NOT malignant melanoma. I made him repeat his self to make sure I was understanding him correctly. They however want me to come back Wednesday and do a "punch" biopsy where they will take a small core from the area to check again. No Dr that I have seen would do another biopsy on the area because they were afraid it would get in my blood system. People are questioning how the biopsy could be wrong after so many had looked at it. I just know that the love that GOD has for me (someone not deserving) is beyond being able to understand and I am ok with that. I still need prayers because the devil is trying to make me question this upcoming biopsy. I know there is power in numbers and I know our God is an awesome GOD.  So I'm sorry to be so long winded but I have to let you all know that God is in the business of miracles!



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Coneflowers's picture
Replies 16
Last reply 11/6/2015 - 9:36pm

Was wondering if anyone had there lesions grow when the first started PD1? My daughter is on Opdivo and after her first 2 doses her lymph node in her neck enlarged. She also has a skin bump that seems to be growing.  Her doctors tell me that it is known that things can get bigger before they get smaller, from the immune system attacking the melanoma but I am nervous.  She just had her 6th dose and everything seems to be getting bigger. I should add that her first 2 doses where not at full dose. She has a pet scan scheduled in a month. Her one liver number has come down and is now in normal range, it was climbing up. She has mets in her liver. Thanks in advance! 

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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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