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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Josh's picture
Replies 26
Last reply 7/21/2013 - 3:50pm

Hello All,


I'm considering one the Dr. Rosenberg adoptive cell therapies offered at the NIH that probably many of us have heard about. Both my current oncologist at Sloan Kettering and my previous one at SDSU say that Rosenberg's adoptive cell therapy trials are the best clinical trials out there right now, however, I've noticed on this forum that other than Warren, nobody has good things to say about the longer-term benefits of these trials. To be clear, I haven't yet had the blood test to see if I qualify for one of these trials and I know that they offer many different trials, but Merk's anti pd-1 drug isn't working for me, so I need to decide on a next step. Considering that Dr. Rosenberg has been doing these trials for a very long time, I'm asking to hear from some long-term survivors or friends/families of long-term survivors. There are lots of anti pd-1 NED folks on this forum, but any Dr. Rosenberg NED's out there? If not, does anybody have opinions why my two great oncologists like these trials so much?  Thanks a lot, everyone!  

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Anonymous's picture
Replies 1
Last reply 7/21/2013 - 3:26pm
Replies by: Linny

How are you doing Alana? Any new info? Does anyone know?

She posted a 1-1/2 to 2 months ago. Just curious what has happened since her initial consult.

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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doriniel's picture
Replies 11
Last reply 7/21/2013 - 12:35pm

I am currently on zelboraf but I'm considering switching to yervoy. Is there anyone who has continued to work full time while on yervoy or are the side effects too much? Right nowIi am working two 12 hour days a week. I'm wondering if i can continue this if i go to yervoy infusions. 

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HopefulOne's picture
Replies 5
Last reply 7/21/2013 - 6:49am
Replies by: HopefulOne, Gene_S, hbecker

Hi all ... tomorrow (July 2) my husband starts ipilumumab. I'm hopeful yet incredibly nervous. I've detailed our journey in my profile but basically just over six weeks ago he had a melanoma tumor removed that was growing around his spinal cord and was also treated with radiation (as they couldn't remove the whole tumor). Just within the past day or two, he has been more like himself. Less pain though some fatigue and bowel issues from the radiation. Now we start the next phase of his treatment with his first infusion of Yervoy and I'm just so worried about how he'll react to it. I know nobody can predict this and I'm not sure the purpose of my post except to hear some encouraging words of support. I'm sorry - this is my first post though I've read many of your moving stories. I hope and pray that someday I'll be able to offer others on here the same support and a story of success that brings hope. Thanks. Kimberly

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JoshF's picture
Replies 2
Last reply 7/21/2013 - 1:04am
Replies by: Janner, Everymoment

I follow this board daily but don't post often. This has become a place of comfort and hope. I had my 3 month derm follow up yesterday and had 2 more moles each approx 5mm or less. Now the anxiety sets in which has been the worst part throughtout my 2 years of dealing with melanoma even thopugh I'm currently NED and pray to stay that way. I never had or dr.'s never found a primary. They think there is still a chance that there was no epidermal component but that is a whole other story. Question is...with the 2 moles I just had removed that makes a total of 10 with about 4 of them being atypical dysplastic nevi. If these 2 are as derm thinks they will be...that makes 6 out of 10. When do you fall into dysplastic nevus syndrome? I have a fair amount of moles but I don't think I have A LOT of moles. A friend said I should find a derm with a dermascope as this provides better detection of melanoma. Anyone have any insight or experience with this?





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

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Hi one and all. I jhave not been on the boards for a while.  So since Last May, we switched from local treatment (Tucson, AZ) for Harry's stage 3C melanoma on his leg, to John Wayne Cancer Center in Santa Monica. We were always seeking a vadcine journey, rather than simply treatment. Harry's ILI produced zero results, though it is supposed to work on 60% of people. We looked for vaccines. We found that JWCC was proceeding with BCG trials.

Since it is not a new drug, all who participate get the real BCG no possibility of placebo. He has been treated with it since April 10. This is given initially as shots in the body, followed by direct injections into the leasons.  There was no way of telling success or failure Except that last June when he went they found only 3 new tiny, tiny ones. IN May they found 11 new ones All got injected. He just went back last Monday Dr.Faries decided to take 2 biosies from previously treated leasons. ON Friday we got the news BOTH showed no evidence of any melanoma. 

Needless to say we are extatic and hopeful, and grateful. I wanted to share this great news with all of you, and encourage to always reearch every where for what is available.

We love JWWC. Great doctors and great care. The great thing about the BCG is the minimum side effects- primarily being tired. Secondly, since it is not a new drug, it is not expensive, and insurance people are all too glad to OK it.

I am not sure how many places offer BCG as a treatment for melanoma. I know that BCG is highly effective also in bladder cancer and it is just starting to be used for that cancer here in Tucson.

I hope that all of you fighting this desease or taking care of some one who is in the fight, will be blessed with good news and outcomes.

The one great thing we can all rejoyce about,is that there are so many new discoveries against melanoma, that we can indeed remain optimistic and hopeful.

Sanda caregiver to Harry

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I had a biopsy in June that came back as In situ melanoma.  Had the out patient surgery end of June and was just barely able to get by without a skin graft.  When I went back at two weeks for a wound check the PA said there was a problem with the margins and honestly I just stopped listening at that point because I just couldn't deal with it.  Went back yesterday to get the stitches out and met with the plastic surgeon who explained that while the pathology report indicated that he had gotten all of the melanoma there were some 'abnormal cells' in several areas around the melanoma.  So, in three months, when the wound has competely healed, he will go back and take 4 biopsies in those areas.  

So, if it's not cancer but just 'abnormal' cells what then?  Because we just barely got away without a skin graft now cutting more out later could be problematic - the melanoma was on the back of my leg just above my ankle.

Thanks for any insight - and no I did not get a copy of the pathology report...



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jrervin0378's picture
Replies 9
Last reply 7/19/2013 - 8:36pm

Hi!!! I was diagnosed back in 2009 with SSM on my right knee (1.08mm, SNB Neg), and of course been followed regularly ever since.  I had a spot removed the other day on my upper arm that my derm has kind of been watching off and on for some time.  It had grown about 1mm in width, so she wanted to take it off.  It was completely flat, pink, and this sounds odd, but if you were to stretch that skin around it, it would pretty much disappear.  And, it had been there for at least 6 years, if not longer.  Kind of reminded me of a birthmark, or scar.  Anyway, I get to googling and all of that other nutty behavoir, and come up with amelanotic melanoma.  Just curious to see if anyone has had on of these rare mels, and if so, what did it look like.  I'm a hot, freaked out mess right now waiting for the results!!!! Any insight would be great!!!!!!!!!!!:)    Thanks!!    Jenn

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AMPDesigner's picture
Replies 4
Last reply 7/19/2013 - 8:54am
Replies by: Janner, Anonymous, Thandster, Owl

Yesterday I was doing my evening ritual (washing my face, moisturizing, brushing/flossing, etc).  I noticed a new mole at the point where my neck meets my chest.   I looked at a photo taken of me on April 25 (less than three months ago) and have confirmed there was no mole there.  This is not read or purple (I believe ruling out an angioma).  I'm 49 (will be 50 in November) with very light skin, light hair and blue eyes.  I have many moles on my body and have  had two moles removed in the past.  These were "iffy" (meeting the ABC..... criteria).  Both times they were "okay, but good decision to have them removed - the cells were atypical."  (Note:  one mole was itcy and bleeding, the other was on my back, I never saw it, the doctor was the one who insisted upon removing it.

My mother had skin cancer (on her legs, not melanoma, but squamas and basal cell).   I've had four friends who've experienced melanoma, two who have died. 

How fast does it take for a new mole to appear and at what point should I go to the doc?  It's funny because I just saw my doc and we were discussing my moles and he asked if I noticed anything new and I said no.... now it is just three weeks later and I've noticed this new one just yesterday.  Size-wise, it isn't as big as a pencil eraser - about 1/2 that size. 

Four people I know have had melanoma - two have died of the disease.  The survivors has moles they noticed that fit the ABC criteria.  The two individuals who died were diagnosed at Stage 4, and in their cases the primary mole couldn't be found (it was explained that their immune system may have "fought" the mole, but the cells remained in the system - if that sounds possible).  In one instance, the cancer was discovered on the sternum of a friend who had to have emergency heart surgery - imagine waking up after having heart surgery with an oncologist greeting you! 

Anyway, back to my primary question - how many people have gone from "nothing there" to "something there"  ?  Is it something gradual (a few years) or fast (as I said, this wasn't there in April). 

I appreciate your kind responses!

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hawaii marcus's picture
Replies 1
Last reply 7/19/2013 - 8:47am

I am a new MM patient, and have just completed my first 2 surgeries in March and April. I started radiation on a Tomotherapy - Hi Art machine, and have completed 30 treaments to my face. I have an odd sunburn and my nose lights up like Rudolph, but I am doing well.

I am ready to heal, and move on with my life. This round is over, and now I await a new PET scan in September to see if there is any spreading of disease.  

My thoughts and prayers go out to those who I am reading about and their family struggles with this disease on these boards.

Keep up the fight, and enjoy your time with loved ones!




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bonusfries's picture
Replies 3
Last reply 7/19/2013 - 8:28am
Replies by: Tina D, Brendan, Anonymous

New diagnosee here. I had a mole on my abdomen that had been there for as long as I could remember, which starting growing both horizontally and vertically. Got in with a good dermatologist, excision, biopsy and then THE phone call soon afterwards. 


The tumor is >4mm, encapsulated with no satellites found in the tissue they originally removed. I was sent to UPenn for treatment, and I had a wide excision and lymph node removal on Friday. Now I'm just waiting for that next phone call.... to me the not knowing, the waiting is the worst part of this. Once I know then we can deal with it. My mind is just stuck trying to overvalue the good news and downplay the tumor depth.


And yeah I know exactly how this happened to me. A fair skinned white kid spends his whole childhood outside in a pool with no sunscreen... just another reason I'd like to smack my younger self.


Thanks for letting me vent, and thanks for the info I've already read on here. Here's to me being a regular for many many years to come.



Just do it

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AllyNTAus's picture
Replies 7
Last reply 7/18/2013 - 9:51pm

Today marks 1 week since I had a large chunk of my right atrium removed to get rid of a nasty cardiac met that had popped up quite quickly. The surgery went really well, all the tumour was removed, but I had to have a pacemaker inserted. I believe there might have been some evidence seen of other mets but I have not seen any reports or talked in detail with the surgeon about this. All I know is that he has bought me some time to keep on fighting, because his words to my husband were that if we had not got this met out, I would have been dead in a few weeks, that's how much it was starting to block the chamber.

I am still recovering in hospital, having been more troubled since by some terrible gastro issues, which are being investigated. I had an irritable bowel before I came into hospital, and I think being pumped full of all sorts of drugs on a basically empty stomach just made things 100 times worse. Anyway should get some answers on this tomorrow.

Next step is to see my melanoma oncologist on Monday, and hopefully get my first infusion of Ipi. Just praying that can be given ok and that it kicks in quick!

It's been great to get support from everyone here, especially cardiac met buddy Amy

A bad day's fishing beats a good day's work everytime

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Tina D's picture
Replies 16
Last reply 7/18/2013 - 7:50pm

Lisa, Been thinking abt you and wondering how the appt went in Nashville? I am hoping you have good news abt the trials there for him.


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Anonymous's picture
Replies 12
Last reply 7/18/2013 - 5:03pm
Replies by: Jaryllane, Erinmay22, POW, Anonymous, Tina D, Gene_S, awillett1991

I had my first dose of Lambrolizumab (MK 3475) about ten days ago and developed intermittent shortness of breath within two days.  Has anyone else on a clinical trial for this drug had the same side effect?  How long did it last?  Did it just resolve over time?  Was any treatment prescribed for this side effect?  Apparently it isn't a common reaction.

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hawaii marcus's picture
Replies 11
Last reply 7/18/2013 - 4:21pm


I'm a new Nasal Mucosal Melanoma patient. Disease free 3 months out after 2 sinus surgeries. Currently undergoing 30 treatments of radiation.

Any other Nasal Mucosal Melanoma patients in here? I know it is rare, and I have done my research on it.

I am hoping to be in the 25% that survive 5 years or more. 4 years and 9 months to go to prove it!


Live life and enjoy what you have!




my story ~~~

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