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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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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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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Have not posted in a while, but had a good follow-up today with my melanoma specialist. I became 3C in Sep 2012 when the melanoma spread to a single nearby lymph node (~18 months after initial diagnosis). I chose to "watch and wait" and today had another all clear visit - my next follow-up is in 6 months and I am scheduled to have a CT scan, an MRI of the brain, and full bloodwork. No PET scans.

It is interesting to me how scan type and frequency seem to vary a lot. Some people seem to have some type of scan every 3 months or so. Clearly, my oncologist is not a huge believer in these scans for detecting recurrence.  


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buffcody's picture
Replies 9
Last reply 7/30/2013 - 3:12pm

I was catching up on my MPIP Bulletin Board reading this morning and read a couple of posts suggesting that posting encouraging news is as important for people reading out here as more difficult experiences.  I was diagnosed at Stage IV a year ago June.  Operations to remove mets on lung and left buttock, SRS for two brain tumors, one course of  Yervoy.  I've been NED since the buttock operation on May 1.  I had two grand mal seizures on May 11, originally diagnosed as the result of a new brain tumor, later corrected to be a side effect of  hematoma from one of the previously radiated brain tumors. In the hospital afterwards for three days.  


Yesterday, after another brain MRI last week, my oncologist recommended brain surgery to remove the growing but dead leision manfiesting the hematoma.  Though still on anti-swelling and anti seizure medications, the latter for the long term, I'm feeling fine and intend to compete next week in swimming at the National Senior Games in Cleveland, a biannual event, in the 70-74 age group.  I've been able to  keep up my training through this  entire year, though admittedly at a reduced level and some weeks and months at zero. 

Brain surgery will take place sometime after next week, of course, not sure yet when but soon.  My oncologist at the Univerwsity of Michigan believes that the Yervoy helped me, but, since the only objective measure I have is that there were no new mets except one in my buttock that showed up after the four infusions, I don't fit any of the objective criteria for success (reduction in tumor load or reduction in growth). But whatever the cause of my relatively easy journey, I am most grateful that I'm able to be fully functional, albeit with legal restriction from driving till 6 months after the seizure, and knowing that there are an abundance of new treatments being developed if I need them in the future.

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François's picture
Replies 2
Last reply 7/16/2013 - 10:09pm
Replies by: DeniseK, awillett1991

8 days ago I had a Pet Scan which confirmed the mets in my liver (about 10) and one limph node in my lower chest. It seems that Zel had stopped working exactly after six month. My onc is very disappointed because mets in my lungs have disappeared and he doesn't understand why it worked in my lungs and not in the liver? Next step is to start a 3 cycle from next Tuesday with dacarbazin until next pet scan in September. He said that plan B is to fight with the social security to have access to Ipi. I am completely devastated, specially coming from a ned stage 8 weeks ago. I can't believe it, but I have faith and I am optimistic with this next treatment.


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casagrayson's picture
Replies 2
Last reply 7/16/2013 - 11:55pm
Replies by: casagrayson, Janner

Short bio:  Husband has had two primaries, both Stage 1 (one with some mitotic activity).  He has had many more BCC and squamous, and this year alone has had 5 Mohs procedures.  The last surgeries were for nodular cancers which were (finally) diagnosed as recurrent BCC, even though he never had any cancer/surgeries in that area.  

Latest derm visit found another suspicious spot.  Biopsied, with the following pathology:

"The speciment is a shave biopsy of skin present as multiple H&E stained sections on one slide.  Cytologic atypia is present and manifests as large nuclei, pleomorphism, and abnormal chromatin patterns.  No atypical mitotic figures are identified.  Architectural disorder is present and manifests as lentiginous hyperplasia, horizontal growth pattern, individual melanocytic hyperplasia and abnormal formed junctional nests that focally demonstrate bridging adjacent rete ridges.  There is an incidental angioma.  The melanocytic process extends to the deep and one lateral surgical margins."

No stains were performed.

The doctor's scheduler called today, said the doctor wanted to do a WLE, and we have an appointment in two weeks.


Here's my question.  In a person who has already had two primary melanomas, and who has had other "unusual" pathologies (they were worried about Merkel cell carcinoma or spindle cell, and quite frankly, never did come up with an answer that satisfied me), should we be dealing with a melanoma specialist instead of just a dermatologist (albeit a pretty good one, I think)?  Is there any reason we should be acting more aggressively (i.e. SNB or scans of any sort)?  I feel as if he is a ticking time bomb, and I want to proceed with the greatest amount of caution without "borrowing trouble".



Strength and Courage,


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Anonymous's picture
Replies 10
Last reply 7/23/2013 - 11:51am

Swelling that can be felt on the surface......if that were a tumor, would it be painful?

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Anonymous's picture
Replies 1
Last reply 7/16/2013 - 4:35pm
Replies by: Anonymous

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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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Anonymous's picture
Replies 7
Last reply 7/17/2013 - 1:51pm
Replies by: Anonymous, awillett1991, DeniseK, 5374brian, DonnaK

My mom has stage IV. Adrenal glands, lymph nodes, spleen, vaginal and brain. Initially, she was tested to see if she had the mutated Braf gene. We were told she did not, so was not a fit for zelboraf. She is almost finished with yervoy and recently started WBR. the Dr. Told us today that they did some more tests and found that one of her tests showed that she does have the braf. Her Dr.suggested that she take zelboraf along with everything else that she's doing.
Anyone experience taking yervoy, zelboraf and WBR together???

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Anonymous's picture
Replies 7
Last reply 10/12/2013 - 6:04am
Replies by: rock, Anonymous, DeniseK, ecc26, POW

Hello everyone,

This is my first post but I have been reading this bulletin board almost daily.  All of your stories and words of encourgaement have been getting me through this toughest time in my life, so thank you. 

My mom has stage IV melanoma.  She was diagnosed in April 2013.  The doctors told us that she had tumors in her lymph nodes, adrenal gland and spleen.  It took a long time for them to get results back that would show whether or not she had the mutated BRAF gene (turns out that she didn't), so there was a long gap between her being diagnosed to her starting any kind of treatment.  While she was waiting, she started spotting.  She's 60 years old so it was unusual.  She went to her gyno and was told that she also had vaginal cancer (melanoma that spread).  Her gyno said that it was very possible to have missed this in a CT scan.  Doesn't this seem odd that world renowned Dr.'s and hospitals would miss this?? 

So, we received this news and still hopeful, she started her yervoy infusions.  She has not had many side effects to the Yervoy except fatigue.  She seemed well until recently.  About 3 weeks ago, she started acting "off" (calling people the wrong names and just more confused-highly unlike her).  Turns out, she had a small brain tumor that would be easy to remove.  The surgeon took it out and claimed that he got the whole thing.  Next, it was time to decide between Gamma Knife and Cyber Knife.  Her consultation was about 2 weeks after her surgery.  She went in for the consultation and they did an MRI to find that there is another tumor that is twice the size of the 1st one. 

I'm trying to stay positive but my family feels certain that this is a sign that things are on the decline and that her cancer is highly aggresive.  She has started whole brain radiation last Thursday (5 days per week for 3 weeks) and had another on Friday.  Friday night and all day Saturday, she was in tremendous pain.  She was holding her side, vomiting and complaining of sharp pain in her ab and back.  I fear that this a result of her adrenal gland tumor.  On Sunday, the pain subsided a bit and today she's status quo.  When the pain increases and you feel it a lot more than usual, does this typically mean that the tumor has grown???

The Dr. is telling us that there's no point in doing a CT scan until 3 weeks after her last Yervoy treatment but I fear that she's dying before me.  Not knowing is the hardest part for us.  If anyone has endured a similar experience and is willing to share, I would greatly appreciate it. 

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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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5374brian's picture
Replies 3
Last reply 7/15/2013 - 9:35pm
Replies by: 5374brian, POW, Owl

Keri made a strong recovery from her intussusception surgery 9 weeks ago. We were excited to be going into the BMS trial. Merck turned us down and BMS wanted 8 weeks from the surgery and WBR. The day to start the trail Keri had acute blocking in her left leg that landed us back in Moffit for surgery. We meet with several doctors and they were torn on weather to do anything or not due to breaking up clots can cause sever hemorrhage when you have cancer. Every doctor came in one by one and stated their thoughts. We told each that we are going to treat what we can today and win. No looking back. We have decided to not dangle carrots anymore. Once Keri recovers from her surgery she had Friday night we are going with a chemotherapy. Our oncologist said lets take it one day at a time. She knows us now to well and we all laughed when our response was we will be back soon for her first treatment. We feel that a treatment is better than no treatment at all. No more waiting we are going for the Hail Mary and are going to get the touchdown. This might not be for everyone but dont let the carrots blind you. Melanoma is no longer playing fair so we are going to start firing back daily with no waiting. Good luck to everyone and remember their are no wrong decisions when fighting melanoma. 

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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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