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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Jamie's picture
Replies 7
Last reply 9/7/2012 - 8:55am

I had pet scan last september'11 which revealed a subcentimeter nodule with suv of 2.5, onc. said watch and wait and have ct scan in december'll to check it, no changes in growth so it was diagnosed as "scar tissue". In mid July'12, pet scan revealed that the nodule was now 2 cm with suv of 9 and onc. sent me to lung surgeon and upper left lobe was removed, tumor was removed and no signs of anything else. We got a call 1 week later saying this was not melanoma mets, but early stage primary lung cancer, which was the better diagnosis, better than melanoma anyways. Anyway, end of Aug. had follow up visit with onc. and he says diagnosis wasNOT conclusive for melanoma OR lung cancer. Samples of the tumor were sent to another hospital and it was "felt" that it was melanoma. We have no 100% diagnosis either way. We (me/wife) were told either way, it was gone and no need for treatment. Can anyone elaborate what is possible, anyone have a similar situation or any advice/comments to share that might shed some light???? I was diagnosed with melanoma in '08 stage 3a, no promlems until now....thanks.....

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frankMill's picture
Replies 10
Last reply 9/11/2012 - 7:40pm

HI Everybody,

3 weeks ago after a workout at the fitness center, I noticed a 1.5 CM lump near my left nipple.  Since then I've been through mammograms (not something most men get the chance to have :), ultra sounds, needle biopsy, PETscan, tumor removal, and SNB under my left arm.  I have new respect and admiration for all of those ladies out there with breast cancer.  When they gave me the 4 shots through the nipple for the SNB with no anesthetic, I about came off the table! OMG!!!

What a whirlwind! The diagnosis was advanced metastatic melanoma.  To say the least, I'm scared and it's hard finding people to relate to.  I'm happy I found this site.

All of my treatments have been at Baptist Hospital in Jacksonville, FL.  They seem to be very competent, but I have a feeling I really need to be in the care of a hospital like Moffit in Tampa.  Nothing against Baptist, but I really need to feel like I'm dealing with the best melanoma specialists possible on this journey.  I have an appointment with Dr. Jeffrey Weber in a couple of days.

Tomorrow I get the results of my SNB and it's really scary.  It seems like every step along the way has another surpise in the wings.  It would be nice to have someone give me a heads up on what's to come.  As an example, what do they do next if the SNB is negative?  What do they do if the SNB is positive?  Do I need to have more lymph nodes removed? Does an anti-angiogenic diet help melanoma patients?  The surgeon tells me the tumor is out and I'm done, but I sincerely doubt that.  I'm sure that I will need some kind of post surgical treatment.  Immunotherapy?

Due to the fact that I had a skin melanoma 4 years ago (it hit me right between the eyes!), this is now classified as a stage IV according to the oncologist.  He thinks I'm very lucky that the PETscan showed no other nodes and my bloodwork looks good.

I apologize for not having mastered the medical jargon, but I'm rapidly learning.  The most important thing is that I can't let myself go to the dark place and be depressed or angry.  I'm ready for battle.  It would be nice hearing from some other warriors that have been through this for support.



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aldakota22's picture
Replies 2
Last reply 9/5/2012 - 7:37pm
Replies by: aldakota22, Richard_K

Been following Dicks progress on his trial with Zelboraf.Beleive he is  early  user  and has been on for 39+ months.Been looking for a recent post on his condition.Also have not seen any recent posts by Lisa13.Any info on either would be appreciated.Both are always in my prayers.Beat the Beast.  Al

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Anonymous's picture
Replies 2
Last reply 9/6/2012 - 7:30am
Replies by: Anonymous

Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  


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Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  


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Anonymous's picture
Replies 3
Last reply 9/5/2012 - 2:00pm
Replies by: natasha, Anonymous, Janner

Hi everyone,

Just yesterday I was diagnosed with malignant melanoma. The pathology report said it was the superficial spreading type, was not ulcerated, had a Breslow thickness of 0.28 mm, Clark's Level of 2, only radial growth phase present (no vertical), and a mitotic rate of 0. Overall, I was diagnosed with T1a. The report then went on to mention that a re-excision of the site with appropriate margins would be necessary. I was wondering what exactly this all means since I have yet to receive a phone call from my doctor explaining everything. Thank you everyone for your help and I hope that everyone is doing well!

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POW's picture
Replies 5
Last reply 9/5/2012 - 11:11pm
Replies by: POW, Anonymous, dellriol, Janner

My brother was suddenly diagnosed with Stage IV MM with numerous brain mets in June. He had WBR in July, which temporarily improved things. He's been taking Zelboraf for 6 weeks, but we don't know yet if it's working. However, he has recently started having memory problems either from the tumors or from the WBR.

For example, yesterday morning he took the medi-van to his doctor's office. The doctor told him to reduce the dose of one of his medications--the doctor even wrote it down. But when the hospice nurse came to my brother's home later in the day, my brother claimed that he had not been to see the doctor that day. He did not tell the nurse about the medication change. Fortunately, the nurse called me and I straightened it out.

I'm sure that my brother is frightened and embarassed by such incidents. He lives with our 90-year-old mother who's not in such great shape herself. So brother has to go most places, including to doctor's appointments, alone.

But I'm sure that many other people with brain mets have had the same experience. Can anyone suggest any strategies or techniques to help my brother compensate for his memory loss? Obviously, keeping a notebook and pen in his pocket at all times is one thing he could do. But I can't seem to think of anything beyond that.

I would appreciate any help you can give us.

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Anonymous's picture
Replies 7
Last reply 9/5/2012 - 9:25pm
Replies by: Anonymous, natasha, POW, Webbie73, deardad

Informal poll - how many of us have had HPV and then melanoma? 

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Based on the data, senior vice president of Global Development and Medical Affairs at Bristol-Myers Squibb Brian Daniels noted that the drugmaker "plan[s] to initiate registrational studies for anti-PD-1 in non-small-cell lung cancer and renal cell carcinoma this year and late 2012, early 2013 for metastatic melanoma." Leerink Swann analysts suggested that PD-1 inhibitors such as BMS-936558, which Bristol-Myers Squibb is developing with Ono Pharmaceutical, "could be the most exciting clinical and commercial opportunity in oncology," partly because such drugs might be able to treat a variety of cancers. Other companies developing compounds that work by similar mechanisms include GlaxoSmithKline, Merck & Co., Roche and Teva.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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jfro's picture
Replies 1
Last reply 9/4/2012 - 11:33pm
Replies by: Janner

Okay, Janner, I just need you to talk to me down a minute.

I really tried not to "research" after what you told me. However, I failed. Do you know anything about Nevoid Melanoma? I read that it often can be misdiagnosed as an Intraderman Nevus. You seem quite knowledgeable and was wondering if you knew anything about this rare type? I am really trying to trust my path report until I see my doctor next week but only having a shave biopsy concerns me!

Thanks again!

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Replies by: Gene_S, aldakota22

I got my second set of scan results after about 5 mos total now on Zel. My cardiac tumor has gone from 23x24mm in April down to 7x8mm and isn't detectable on the PET. In April I also had a "4 mm area of enhancement in the left inferior frontal lobe with edema. Probable metastasis." but no confirmed tumor mass. Brain is now ALL CLEAR. For this BRAF V600D girl, Zel has saved me for now.

I have a couple of questionable spots from the PET ( maybe lymph nodes or nothing) in my abdomen and am getting a follow up CT. So, not sure if ZEL is starting to fail, but for me the most important organs are clear, as well as my skeleton 1 yr after surgical removal of a nasty pelvic bone met, so I'm calling this a WIN.

Having not done Yervoy I am switching over in a couple of weeks while things are looking really good. Not eligible for ANY trial with a cardiac met. Anyway, I'm still hoping to kick this Mel once and for all and be able to raise my 3 kids. Even though Yervoy scares me, Zel has been no picnic either. Y'all, my fingernails are starting to come loose from the nail beds. Seriously. Yuk.


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bc84's picture
Replies 4
Last reply 9/7/2012 - 4:33pm
Replies by: HoolieB, bc84, Janner, Anonymous


I should apologize in advance if I am not supposed to post here because neither me nor someone I know has been diagnosed with melanoma.

I recently have been educated about melanoma and I wanted to schedule mole exams as a preventative measure. I read on this website that melanoma specialists are the most knowledgable, so I tried to call the offices of several of the recommended specialists on here but of the several specialists I called, none of them see patients who have not been diagnosed with melanoma.

My question is, can anyone give me a recommendation for a thorough dermatologist in the southern California-area?

Thanks for reading. 

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jfro's picture
Replies 15
Last reply 9/4/2012 - 6:30pm
Replies by: jfro, Janner, POW, LynnLuc


I was hoping someone could help me decipher my pathology report. My diagnosis seems a bit rare and doesn't seem related to melanoma but I tend to get very nervous right away. I'd appreciate any help from any kind hearted soul out there.

Diagnosis: Melanocytic Nevus, intradermal type, with focal atypia

Clinical Data: Pearly Papulr R/O Squamous Cell Carcinoma

pecimen Site: Right elbow-shave biopsy

Gross Description: This specimen is a portion of skin measuring (mm) 4x3, 1pc.

Microscopic Description:
Present within the dermis are orderly nests, cords, and strands of melanocytic nevus cells. There is focial atypia present. There is melanin pigmentation present. HMB 45 shows some superficial staning, Ki-67 stains rare singe cells in the lesion. P-16 also shows some scattered positivity. If this is a smaller portion of a larger lesion or recurs, complete removal is recommended to ensure full histologic evaluation.

Okay-so I'm freaking out a bit! Could this come back melanoma once looked at again??


Thank you.

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wlibby2020's picture
Replies 1
Last reply 9/4/2012 - 10:57pm
Replies by: jag

Since my stage 4 diagnosis 2 years ago I've developed an allergy to contact with chlorhexidine and I believe it is somehow related to one of my treatment protocols and am hoping to see if others have experienced same.

Chlorhexidine is an antibacterial in products like Surgiprep and Hibiclens and even gym wipes as well as mouthwash at the dentist.  The allergic reaction ranges from severe contact dermatitis to anaphalactic shock.  It's a rare allergy but a severe one requiring epi-pens, medical tags, etc.

I've never had an allergy before I had treatment and the way chlorhexidine works seems to be somewhat related to melanoma treatment, but I cannot find solid evidence connecting the two.

I've had biochemo and TIL (t-cell therapy) at MD Anderson before I developed it and am currently in BRAF&MEK clinical trial at Moffit.

The first time I had a reaction was a cleaning kit for PICC line, second time was a surgery prep and last time was said gym wipes.

This may have nothing to do with melanoma treatments and be a one-off, but it is a pretty severe allergy so if anyone has also developed it we may be able to spread the word.

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Jin's picture
Replies 4
Last reply 9/4/2012 - 7:59pm
Replies by: Jin, BrianP, deardad

Hello to all you incredible folks.  I've been reading this blog since my husband, Chris, was diagnosed with Stage 4 Mel in Jan. 2011. You all have been an inspiration and huge support in our journey.  So, I thank you and thank you.

Chris's journey started with a visit to the emergency room followed by a craniotomy for a bleeding brain tumor.  This was the first we know he had cancer.  He was lucky enough to get on a GSK Braf Inhibitor trial at UCSF in April 2011.  Everything looked good for a year and then in April 2012, his scans showed progression in both the brain and the body.  He had Gamma Knife to treat the brain mets in May.  Also went on Zelboraf and Yervoy In May.  Brain MRI in July showed two (out of 14) of the mets treated with gamma had progressed and there were four tiny new mets in his brain.  We chose to have no steroids and no treatment of his brain as that would almost certainly require steroids too.  We crossed our fingers and hoped the Yervoy would work.  Chris is due to have another MRI of his brain this friday.  Based on the subcus we can feel, it doesn't appear to be working.  We've talked to everyone we can think of but can't any PD-1 or PDL-1 or Adoptive Cell Transfer that will allow him on if he has active brain mets. 

Does anyone know of anything?  His oncologist is recommending whole brain radiation followed by a gamma knife "boost" in the hope that that will give him 8 wks of brain stability.  Everything we've read or hear about whole brain would indicate that whole brain is going to have significant and permanent neurological side effects.  Chris is 61, in great health other than the melanoma, and we'd love to have some option other than whole brain radiation.

Any ideas would be much appreciated.

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