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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sjl's picture
Replies 5
Last reply 8/4/2012 - 1:52am
Replies by: sjl, cliff61, Anonymous

My husband was diagnosed with mucosal melanoma of the nasl cavity in April.  He's had surgery for it twice with clear margins the second time plus the removal of several lymph nodes, one of which was malignant.  He's at stage 3:  T3c, N1, M0.  In addition to that they found another primary cancer, non small cell squamous in the lung. 

They've held off on radiation while they figured out the lung and he is scheduled to have part of the lung removed in a couple of weeks.  Now, everything is up in the air again.  He woke up Sunday morning with a chain of lumps along the neck and swelling.  It has gotten worse.  We saw a doctor yesterday who said it's melanoma that has spread to the skin.  Biopsies were taken with a rush order and we will get an appointment ASAP after the results come back.   I can't believe how fast those bumps showed up.  We had just seen a doctor about a week earlier and asked about a small swelling at the top of the incision in the neck and were told that it was nothing to worry about.  We were told repeatedly yesterday that the delay in radiation has nothing to do with the melanoma coming back like it did.  I thought that's why we were supposed to do radiation in the first place!  I know that radiation doesn't always work but what hope is there for my husband now?  They are talking about doing a shorter but stronger course of radiation than originally planned and possibly radiating the lung now rather than removing a piece.  He's being checked for cKIT for the possibility of Glevec and maybe another clinical trial.  The doctor we saw yesterday had asked for the testing for cKIT back in May and we found out yesterday that it was never done.  He's asked again.  We are dealing with UPMC and the Hillman Cancer Center so we've got good doctors but even there, you have to stay on top of things yourself. 

Any suggestions?  Is there any hope?

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Hi Kevin,


I have been away from the board & trying to catch up on what's happeneing!

I have been praying for you all week because I knew you would be having your MRI & Scans.

Please post an update when possible.

Stay Strong!


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allinhughes's picture
Replies 6
Last reply 8/3/2012 - 3:37pm
Replies by: EmilyandMike, KMT2003, Janner, Anonymous, natasha

I just don't know what to think, I really need to hear some positive thougths and stories please, I am 35, 3 kids, was a sun lover and had a mole removed from my back that turned out to be Melanoma, it is draining to my left inguinal lymph nodes, they are calling to schedule my surgery on Friday and I just don't know what to expect and what is gonna happen, my Dr. said don't worry you are not gonna die, you are young and healthy and you cought it early, yet the more research I do and the more i read the more freaked out I get,

How can you live in the future if you are regretting the past and fearing the future, I am here now...

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chalknpens's picture
Replies 3
Last reply 8/3/2012 - 1:59pm

I am new to melanoma. Since the end of May, I've had five sites biopsied and all have come back with something: two were basal, one squamous, and two melanoma. I've had three Moh surgeries on one melanoma site, two on the second, smaller site, and full excision on the two basals. The squamous will be either excised or Moh when the stitiches come out of my second melanoma.  I'm in my sixties, and never had stitches before this. Now this summer, in the past eight weeks, I have over a hundred. It has been non-stop, with only a few weeks in between surgeries while stitches heal. Then back for the next. The stitches are all still recent, and ugly, and obvious. My back looks like it bears the "Mark of Zorro." So now does my arm.

I also have multiple sclerosis, and serious depression as a result of the MS diagnosis, which took me out of my classroom earlier than i'd planned. I've always been heat intolerant, perspiring heavily and looking nervous even when I wasn't. This, too, over time, added to the stress and anxiety that became depression. I was injecting a medication I didn't have faith in for four years, and finally last year, with the help of a counselor and anti-depressant medication, i was able to 'just say no' to the prescription for multiple sclerosis, and had just begun to feel more of my old, confident, assertive self. But it was too late to save my career. Little did I know that melanoma was yet ahead. I loved my job. I loved my colleagues. I miss them.

I'm from a large family. Some of my siblings have passed, as have my parents. But I still have five siblings. Most are a few years younger than I am. They continue to think that I can handle it. Only my husband truly "gets it." He is my rock, and always a full partner in my medical issues.

I never did manage to help my sisters understand that MS limited my energy, made my comfort level difficult to attain in summer, and cut into our financial resources. They are aware of the melanoma now, and yet still plan family get togethers on sunny beaches that are long drives away.

It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.

I guess I just needed to vent this in a safe place. It is so frustrating. They are all in their fifties or more. They are not uneducated, and not uncaring. But they are so dense when it comes to what they believe i ought to be handling and still showing up socially. I just want to walk away from them totally. But they are family. They were 'hurt' a year ago when i asked them to stop inviting me out to lunches with mediums at expensive restaurants.

I don't need lunch with a medium. I need time to sleep, and to save money for medical bills that are never ending. I want to spend awake time with my husband, or with my grandchildren and adult children. I am so fed up with them. They just don't get it.

I am not perfect, but I am enough.

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TSchulz's picture
Replies 21
Last reply 8/3/2012 - 1:12pm

I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.

In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation.  I randomized to the arm of the trial that did not include TBI.  As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.  

I returned in June for my one month follow-up scans and received the news that my tumors had decreased in size an estimated 54.2%.  Huge news!   Then last week, at 2 months, scans showed they are approx. 70% smaller than before treatment and no new tumors were reported - equally important at this stage.  After receiving a big hug from my research coordinator she said that there was a lot of good news shared in clinic that day.  

I know my story does not end here but we are hopeful to see this trend continue.  This is the first good news (concerning melanoma) we've had in over a year so we are celebrating and looking forward to a brighter summer!

I wish all the best to everyone dealing with this disease - we need to see a bunch more NED in 2012.


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mom3girlsFL's picture
Replies 6
Last reply 8/3/2012 - 11:53am

Hi All,

Haven't posted in a long while - just wanted to check in and share AWESOME news!  NED is once again a visitor in our home.  CT chest, abdomen, and pelvis clear as of yesterday!!!!  Almost 2 yrs NED now after radical groin dissection with lymph node involvement in late 2010.

Still get scanxiety, still waiting for our world to fall apart again, but trying to remain positive and hopeful.  Mel will always be in our life and some days are more difficult than others to cope but still hanging on!

Keep strong! Keep fighting! Know that you are all prayed for each and every night!


Do not fear tomorrow, God is already there.

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chalknpens's picture
Replies 8
Last reply 8/2/2012 - 8:46pm
Replies by: jfergusfl, chalknpens, Anonymous, Janner, natasha

I've read a few other posts here, and learned that some here have had a second melanoma site, as I have. My question is does it matter that mine was found a month later, while others are found years later?

I had my second 'slow Moh' surgery today. The surgeon noted that this site, as the first, is an atypical site with undefined borders. It took three surgeries over seven days for the first site, and then the wound was declared malignant-free with clear borders. That site required over fifty stitches to close, and is now healing with stitches removed. The second site is one I'd questioned and so it was biopsied on a follow up visit a month after the first.  Both sites have been visible for about two years, waiting for me to finally have the courage to see a doctor who could biopsy them and recommend surgery based on the malignant melanoma finding.

Have others here had multiple "primary" sites discovered at the relatively same time? Does this have any meaning as to metastasis? I'm guessing that more sites will be identified when I return for another skin check. I have half a dozen 'pre-cancer' sites presently healing from cryosurgery, and not yet healing well (it's been 8 days) and think some of them may be cancer, too.

Please let me know if you've had multiple melanoma sites identified at the same or nearly same time? Mine are on separate body parts (back and arm.)

I am not perfect, but I am enough.

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himynameiskevin's picture
Replies 13
Last reply 8/2/2012 - 7:22pm

Well the good news is, I saw my radiation oncologist and she informed me that there is nothing new showing in my brain besides the ones that were treated and the three that are going to be, I had another mask fitted while I was in and will be having one (hopefully last) session of SRS on Monday morning to finish these things off. She told me that there is still swelling around some of the lesions, and that this is natural for the first few weeks after radiation, so unfortunately it's recommended that I stay on the steroid and anti-seizure meds for the time being, but taper off as soon as possible down the line.

I also saw my regular oncologist and he has officially put in the order for me to start Zelboraf, unfortunately with the time it takes to process the order, get authorization and handle other medical variables I don't understand but know are necessary, I won't be able to start it until 3/20. Three  weeks. :/ Oh this waiting is always the hardest part... But a plan is in order and maybe as the SRS does its thing, some preemptive thoughts of a possible hopeful outcome in the future will trigger genuine optimism and make this time pass quickly. A day at a time. That's my goal.. a day, a week, a month at a time... and then maybe one day I'll be 90 with quite a story to tell.

Thank you all for the ongoing encouragement and support.

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himynameiskevin's picture
Replies 15
Last reply 8/2/2012 - 12:00am

I've been suggested to stop Zelboraf for awhile as I have had more progression in my head.

After stabilizing my head via SRS or WBR,  think the idea is that I'll do IL-2 again or give Temador a shot, while getting back on Zelboraf.

I think I've decided my dose this morning will be my last for now and I'm just wondering, to those out there who were on it, but aren't anymore, are there any side effects from withdrawal you've experienced or I should know about?


Thank you for any information.


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Replies by: kelty, sjl, Anonymous, Janner

I am a woman in my 60s and was diagnosed about 6 years ago with a Clark's level 11 melanoma on my forearm (Breslow .25mm - no more info.) that my husband insisted I have checked. Had WLE and was told to come back yearly. I really never gave it another thought, and certainly never expected to have another one. A few weeks ago, I was diagnosed with one melanoma in situ on my lower leg, and a severely atypical mole on my upper arm. I had WLE on each. My current dermatologist said I will need to be vigilant with self-exam, because the mole that turned out to be melanoma in situ did not look at all suspicious to her. She biopsied it because I asked her to. She is very supportive of my finding a good melanoma clinic and also seeing her at 3 month intervals. Most convenient would be Pittsburgh (Hillman?), Philadelphia, Baltimore, or Washington, but I would also consider Chicago or Minneapolis. I am looking for a center in which monitoring for new primaries via total body photography is a focus. It has been hard to find information about this because centers are emphasizing their expertise in detecting and treating metasasized melanomas. I would of course value their expertise in these areas as well, because I hope to have a long-term relationship with the center I choose, and realize I may be in a position to need those services in the future. For now, though, my focus is on catching any new ones at an early stage, and I have no confidence in my ability to do this on my own. I am hoping that one of you may know something about centers in these cities, and give me a place to start at least. I've been impressed with the level of expertise and plain old wisdon on this board. Thanks for your help!

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Liz C's picture
Replies 3
Last reply 8/1/2012 - 12:22pm
Replies by: Liz C, aldakota22, Anonymous

Nine years after my last melanoma surgery, I was just diagnosed with a new primary.  Stay vigilant, folks!

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Jennholbert's picture
Replies 2
Last reply 8/1/2012 - 8:19am
Replies by: AngelaM, natasha

I was diagnosed tonight at 7:30 by my sweet dr who wanted to give me the info as soon as she received it. I had a mole on my right calf for a good 4 years. Last Friday (7/27) I had the mole removed along with good margins. The wound has been left open ...oh how nasty it looks! :)

I was surprised how fast the results came back, considering the lab only got the biopsy yesterday morning. I was told that it is an early stage melanoma with shallow growth. Dr mentioned how deep it was, but my head was swimming. So that's good.
One slide showed that I had a regression so I'm being sent to an Oncologist for my follow up procedure and possible look at my lymph nodes.

Tomorrow I am going in to have my wound checked and to talk more. Can anyone give me a list of questions to ask my dr tomorrow and also the Oncologist?

Thank you so much!


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Donna19702's picture
Replies 1
Last reply 7/31/2012 - 1:30pm
Replies by: gabsound

my son Michael was diagnosed with Spitzoid Melanoma Oct 2011, he's 27. He was stage IIIC, which the cancer started out as a mole on his foot then spread to his groin lymph nodes. 4 out 14 that was removed returned as cancer. He was only able to complete 4 months of the interferon due to severe weight lost, anxiety, fatigue along with others. His PET Scan came back excellent and was told that they would see if the Pharmaceutical for Pegylated interferon would approve him. If they denied his request they won't put him on anything. I feel that there has to be another treatment out there for him and they can not just say NO!


Could someone please let me know if you have any suggestions that I should bring up to his oncologist.



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bikerwife's picture
Replies 1
Last reply 7/31/2012 - 7:50am
Replies by: deardad

Had 5 mets removed from brain in feb sucessfully. Lastest scans show 2 more very small ones not sure if new are was there before and 2 little to see. Due to do gamma knife again in aug.

He is taking zelobraf and in four weeks all his visible tumors have completely disappeared. Hoping one inside chest cavity on one on kidney are shrinking also.

I'm worried. About doing gamma knife again but our dr assures us it will be fine and that they can get them.

What God leads u to he will. Lead you through

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Steve2142's picture
Replies 12
Last reply 7/31/2012 - 7:04am

Hello -

A small lesion with a high mitotic rate was removed from my cheek two weeks ago.  The SLNB showed three microscopic deposits in one of two nodes that were removed.  I go see the Doctor on Tuesday to discuss a CLND in the neck to remove 50 more lymph nodes.  This surgery makes me nervous but I feel relatively calm in general as there is nothing I can do about my cancer or prognosis today...except read, learn, and hear what you have to say.  I am in the process of preparing a bunch of questions for the consultation including if this is Stage IIIA or B (due to the mitotic rate).  I have a pet scan Friday - I assume this is to determine if it has spread to the brain/liver/lungs/bone thus making a CLND irrelevant.

Please share your recovery story if you had a similar CLND.  How long before you went back to work and felt relatively normal physically?

I have also been separated for a little under a year and this adds a little relationship complexity to the situation.  Feel free to share on this topic as well.

Thank you!


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