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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SDJanku's picture
Replies 1
Last reply 5/18/2013 - 5:25pm
Replies by: washoegal

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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JoWen's picture
Replies 4
Last reply 5/18/2013 - 1:50pm
Replies by: MattF, JoWen, Anonymous

A few years ago Joe began having cluster headaches....it came in cycles, lasting anywhere from weeks to more than a month at a time.  Each one peaked at around 15-20 minutes and than began to subside.  The event lasting about an hour, about the same time each day.  Each time there was a physical change noticeable in the drooping and tearing of the eye.  He said that the pain would literally go to his jaw line.  Seen by PMD, Dentist, Endontist (for a root canal that he didn't even need) Neurologist and Neuro/Opthamologist at Cincinnati Eye Institute and a CT was done (normal)  Numerous meds tried the only thing that seem to work for short time only was Prednisone, however they did not want to continue having him on a steroid.  There was nothing out there for his pain....when it came on.....he paced the floors waiting for it to subside.  We were told that they don't know what causes cluster headaches and for some, it's doing or taking whatever helps the individual.  Oxygen was suggested but he declined at that time.

Within the last two months, he began to have a blurred/foggy vision and an uncomfortable irritation in the eye.  Seen by the eye doctor, he found that there were cataracts, but also evidence of possible past episodes of iritis. There was a thickened area on the sclera which he said was a cholesterol deposit.  The arteries within the eye were engorged, which he said were sometimes typical of people with high blood pressure, however, Joe's BP is constant in the range of 110/60. So he said that there may be more going on, possibly systemic or involving connective tissue.  It was then that Joe told him of his recent diagnosis.  It was felt that with upcoming surgery and pending CT and MRI, we wait until the results of these come in.

So now I am wondering, whether or not his "cluster headaches" have really been that, or connected to the melanoma

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2013 - 9:13am

I need helping finding a doctor for a family member diagnosed with stage iv melanoma with metastasis pretty much everywhere (brain, lungs, liver, lymph nodes, etc.). I feel like due to the diagnosis and poor prognosis, I don't want to mess around - I'd like to get, at the very least, an opinion from a top doctor in the field of melanoma research. But, I'm having a hard time figuring out who that would be... Any advice? how to research? good experiences from specific doctors? I have a bazillion airlines miles so we can pretty much pack up and go anywhere.

This is scary stuff! Any help would be very much appreciated!!

Thanks!

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Posted several updates since my wife was diagnosed Dec. 7 2012. Her oncology staff is at Moffitt in Tampa Fl. She had 1 spot treated on brain with radiation and completed her round of IPI treatments 03/19/13. During the IPI treatment a tumor inflammed in the throat tonsil area causing swallowing and eating issues. It was decided to have the tumor removed as much as possible. That was removed on 04/09/13. Her follow up scans showed 6 small new spots on brain and several new spots around body/organs. There was very little shrinkage if any on original tumors. She started WBR  10 treatments on 04/26/13 and was prescribed Temador to take while WBR. During the past 4 to 5 weeks she was complaining about sever stomach pains which gas X and bentyl seemed to be helping.  while driving to our WBR appt. on 04/29 her stomach pain was sever enough to put her in tears. Right after her radiation she was admitted to Moffitt. The stomach scan showed intussusception caused by a tumor. On 4/30 the whole team  from radition, oncology,GI, social worker meet with us at our room to discuss our options. I knew with this many ppl coming in that someting was not going to be easy. The surgeon explained that the surgery for the intussusception would relieve her current problem but wanted us to relize that due to the amount of cancer that he couldnt fix everything. The doctors discussed with us that the surgery would limit the future systemic treatments until healed and even then the history of both surgery could stop her qualifiying. They started talking with us about quality of life and they feel her time now might be shortened. They gave us an option to do the surgery or return home and suffer through the pain and naussea until a trial would be available. It was also suggested as a plan to start meeting with Hospice so we are fimiliar with the caregivers there and how the programs there could help our family through all this no matter if we elect surgery now or not.  Within a 15 min talk my wife and i were floored. She is 35 yrs old and still going strong, working , walking, house keeping etc. I was thinking WTH just happended. Surgery , no surgery, hospice, shorten time.. how can you handle this all at once. We have always been determined to win. We choose to do the surgery so she could eat and not have the stomach pain. It was done within 4 hours of us approving. She is at Moffitt now in recover. We agreed to meet with Hospice once we get home to understand their program. I would think IPI is still in her system and will still help. she has continued the WBR and has 3 more treatments this week. We dont plan on sitting still. The oncology team said make a full recovery from this surgery which could take 30 days then they could review and determine if another systemic treatment could help. What treatement should we be looking at. How can things be to this degree? Scared and confussed...  

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Hi,

I am new to this forum

I am stage 4 and I been NED for 12 + months after taking PD1. I was a complete responder on PD1.

To my surprise, I had my FU Mri brain & CT scans. CT results showed no tumors NED. BUT Brain MRI showed new MET in Brain 6mm. This is my first brain met and I am very scared. I am hoping that this is not the start of multiple brain mets.

I have researched SRS and the results are mixed tosuccessfully killing  the tumor completely. Also the side effects of SRS and the radiation killing healthy cells is something that I concerned about.

I have been reading  about Proton therapy for brain mets. Research says Proton therphy has  less side effects & less damage to healthy cells.

Has anyone treated their Brain Mets with Proton Therapy & what were your results? Was the treatment successfully?  Any short term and long term effects?

MD Anderson has an outstanding Proton Treatment Center. Anyone have their brain mets treated at MD Anderson. What kind of treatment did you get for your brain Met at MD Anderson??  Did MD Anderson give you a choice to have Proton Therapy?

I would hate to fly to MD Anderson, and then MD Anderson decides is to give me SRS and not Proton. I can get SRS near my home so I would only be going to MD Anderson for the Proton Therapy.

 

Thanks for  your replies to my post.

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/17/2013 - 7:25pm
Replies by: LibbyinVA, King

Anything new?  don't use facebook.

Insert Generic Inspirational Motto Here

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Linny's picture
Replies 1
Last reply 5/17/2013 - 6:39pm
Replies by: Cooper

CHICAGO (Reuters) - Melanoma patients treated with two Bristol-Myers Squibb drugs fared much better than those who received either of the medications individually, a new advance for treatments that harness the body's immune system to fight cancer.

Bristol released preliminary data from the early-stage trial on Wednesday, with more detailed results expected to highlight the American Society of Clinical Oncology's annual meeting in Chicago that starts at the end of the month.

Patients in the study received Bristol's immunotherapy Yervoy, which is already on the market, and an experimental treatment called Nivolumab that attacks an immune-system-inhibiting protein called PD-1. The combined treatment shrank tumors in a majority of patients.

"We have never seen this with immunotherapy before," said Dr Jedd Wolchok of New York's Memorial Sloan-Kettering Cancer Center. "The vast majority of patients have a decrease in tumor burden. In melanoma, we're used to seeing the opposite," he said of the notoriously difficult-to-treat form of skin cancer....

http://news.yahoo.com/bristol-melanoma-drug-combo-marks-advance-immunotherapy-222417114.html

Stage III, Unknown Primary; 1 positive node in left axilla

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A melanoma advocacy group in Canada is conducting a survey of melanoma patients who have taken trametinib.  YOU DO NOT NEED TO LIVE IN CANADA TO PARICIPATE.  

The purpose is gather data to help inform the appropriate government agency about whether this drug should be funded in the Canadian health system.  If you live in Canada and have taken this drug please take a minute to complete this survey:

http://obsurvey.com/S2.aspx?id=0A9B7A11-0458-454D-B1A1-D118FBE8C121

Tim--MRF

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/17/2013 - 9:53am
Replies by: Tim--MRF

Hello Everyone,

Several weeks ago I noticed on a forearm of my husband a red bump, which I thought was a pimple. I almost forgot about it but today I noticed that it is still there. It is reddish, not painful, raised a little bit, hard, and a size of a pencil eriser. However, when I press on it, the color disapperes completely. My husband never was diagnosed with melanoma (I am Stage 1 patient) but the stories about amelanotic melanoma drive me crazy. I'll make an appontmrent with a dermatologist for him next week. Can melanoma blanch??? I hope it is just an ingrown hair or cystic acne! Any thoughts????

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JoWen's picture
Replies 8
Last reply 5/17/2013 - 6:59am

Went to see Joe's medical oncologist yesterday.  So at present he is stage IIIA, and interferon vs completion of lynph node dissection.  With Interferon having a low percent success rate and the controversial data out there on the surgery....a decision has been made for 3 month observations, alternating between surgical oncologist, medical oncology and dermatology.  Yesterday they drew a LDH, metabolic panel and a re-evaluation of the tissue samples from surgery for BRAF mutation.  Next week he will have an MRI of the brain and CT with contrast of the Chest, Abdoman/Pelvis, followed with Dermatologist appt. then seeing surgical oncologist the following day....who said you slow down during retirement!

Hoping for the best....always 

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flvermonter's picture
Replies 2
Last reply 5/16/2013 - 10:20pm
Replies by: flvermonter, Phil S

My husbands biopsy of the spot on his right lung was cancerous. Dr Zager called today to say the thorastic surgeon would call to meet and set the surgery date to remove. Dr Zager WL remove the rest of the lymph nodes on that side.

What should we expect after the surgery? Wl it be radiation and/or immunology? What is the recovery like for him. I will be calling Dr Zager tomorrow with follow up questions, but if you could share your thoughts/ experience??? Thanks mary

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Advances in the Systemic Treatment of Metastatic Melanoma
Melinda Yushak, Harriet M. Kluger, Mario Sznol
Within the relatively short time that ipilimumab and vemurafenib have been commercially available, phase II data for the investigational agents nivolumab and MK-3475, for the combination of dabrafenib and trametinib, and for adoptive cell therapy strongly suggest even further improvements in treatment outcomes.

The Article Reviewed:
Treatment for Advanced Melanoma: New Drugs, New Opportunities, New Challenges
The Past, Present, and Future of Melanoma Therapy

To view this email as a web page, click here.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/16/2013 - 6:11pm
Replies by: Cindy VT, Janner

Hello Everyone,

Several weeks ago I noticed on a forearm of my husband a red bump, which I thought was a pimple. I almost forgot about it but today I noticed that it is still there. It is reddish, not painful, raised a little bit, hard, and a size of a pencil eriser. However, when I press on it, the color disapperes completely. My husband never was diagnosed with melanoma (I am Stage 1 patient) but the stories about amelanotic melanoma drive me crazy. I'll make an appontmrent with a dermatologist for him next week. Can melanoma blanch??? I hope it is just an ingrown hair or cystic acne! Any thoughts????

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Anne-Marie's picture
Replies 4
Last reply 5/16/2013 - 5:57pm
Replies by: MattF, Janner, Anne-Marie

I had surgery on March 13th to check my primary lymph node, which was clear, and to perform a segmentectomy on my left breast after a scrape biopsy performed in February came back as Melanoma.  My mole was a dark brown and slightly grey when it was biopsied.  I am having a slight panic attack as I was applying Vitamin E oil to the scar I noticed a new spot,  sort of round, but extremely light brown along the border of the scar on my breast.  It seems to have some texture but almost flat and I would say it is 4mm. I can't say it is right where the original sight was because so much skin was removed before I was left with a verticle scar.  I have spoke with a few people outside the community and they have suggested photographing it every few days and look for changes before I rush it.  I would just rush in, but I am still dealing with financial issues from my surgery.  I am hoping I can wait till my July appointment.  If there are changes, I will rush in.  But if you were me, what would you do?  Has anyone dealt with this? I was diagnosed with stage 1.  Everything came back clear.  Since then I have had two moles come back mildly atypical.  

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/16/2013 - 5:44pm
Replies by: Cindy VT, Anonymous, Janner, randallgford

In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

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